I am assuming it is because it was getting too long. So, I am starting part two.

I have been on IV Rocephin for 4 weeks as of tomorrow.

I have an interview for a service/assistant dog Thursday. I don't know if I am a good candidate or not. I assume this is what the interview will tell me.

I also have been without an in home health care person for a week.

I did not do very well last week. I am hoping to do better this week. It has been discouraging to be on treatment this long and still be this low functioning.

I would prefer to be able to take care of things myself around the house and not have an in home health care person. But, I am thankful for them.

I need an attitude change or something. Discouragement is setting in.

I also received a letter from work regarding workmens' comp not being approved. I continue to believe there is a connection between the others at work and myself, but realize it is a difficult connection to make.

This means the doors are closing to work. I am thankful that they have remained open this long.

I would prefer to return to work at this time, but know that is not realistic.

I think this is the longest I have been in a slump and not able to pull myself out of it.

Well, I am going to get in my power chair and get out of the house while it is still below 100 degrees and see if that doesn't help.

I don't know why I feel defested right now, but I do.

I think it would help if I got good news about the assistant/service dog, finances increased, found a new in home health care provider, was able to be more active and had my own transportation again.

It has been a year since I sold my car now. Although I have mixed feelings about this. I am not sure if I really should be behind the wheel at this time. At times, I think I would be OK and other times not.
 

I'm sorry you are Discouraged right now, hopefully things will get better soon. I know what you mean, it sometimes feels as if treatment will last forever with no hope of an ending.

Don't loose your hope though, I will pray for some good news.

Hang in there.
 

I am on my third month going on 4th of IV treatment and have herxed most of the time.

I am in bed more than I am out.

I have two kids and do not work and cannot have applied for SSI.

I have fibro, cfs, arthritis and 20other diagnosis's and it is hard to know wher lyme begins and the others end.

I am very discouraged now too.

What has helped is I have drug my self to a couple of fibro support meetings and have a few numbers of people I can call--don't call much but they call me and I am able to help them which gets me out of my own way.

there is light at the end of the tunnel--hang in there!!

I was so down last week I found myself with a gun in my hand and it was a real wake up call--I have many things to live for.

I have read your other thread and you get out when you can and that is good, I do the same.

Just keep on keepin on and everything will fall into place--I promise--you will see.

Cathy

------------------

 

You are one of the strongest lymewarriors I know, pushing, fighting, straining to exist.

I feel your power all the way across the country.

I will you to survive, heal and return to life.

I am fighting the fight too, and also feel overwhelmed by the challenge at times. I know deeply the frustration and despair, the exhaustion from the feat of survival.

The issue with your co workers...and the "mysterious illness" is still puzzling.
It's hard to accept that there isn't something going on there.

I wish the doctors were more brilliant.
As brilliant as the shine which emanates from you.

I recently tried another letter writing campaign to the local newspaper

to improve tick disease awareness and diagnosis and treatment.

I write about my experience and put in contact info for more info. I email the letter to area papers.

After last year's letter to the editor, many people who were sick were able to get info, treatment, and recover. It made me so happy, and helped me feel more empowered.

Maybe putting your voice out in a letter to the editor would attract the help you so deserve. Maybe that's wishful thinking....
but boy do I wish better help for you.

[This message has been edited by lymewarrior03 (edited 24 June 2004).]

[This message has been edited by lymewarrior03 (edited 24 June 2004).]
 

[This message has been edited by lymewarrior03 (edited 02 July 2004).]
 

[This message has been edited by lymewarrior03 (edited 02 July 2004).]
 

I think part of the discouragement is from a visit with a non LLMD. This visit started in January and the wheels are turning so slowly.

He asked me if I had seen any improvment with my breathing after taking over a year of abx. The answer was no and put doubt in my mind.

But, then he didn't have any thing to offer to help yet.

Cathy...so sorry to hear about all the fun you are having too. I do think we are on the right track. It just is a long slow battle.

With each new treatment, I think that it will be the one to turn the corner and then get discouraged when I can't see the corner as soon as I thought.

Bev,

You said the magic word. HOPE. I think I am beginning to loose hope. This is not good. I will be glad when hope returns.

On the other hand, I also am thankful this is all I am dealing with and for all those positive things that I do have going for me.

I know that when I see my LLMD in August, I will once again feel better about things. I hope.
 

I usually have a lot more to say than this, but brain fog and fatigue added to my summer cold aren't being very helpful right now.

Please know that I will be thinking of you.

And NEVER EVER LOSE HOPE!
Hope, faith, love and a heavy dose of persistance will get you through this, Kam.

Your well being will be in my prayers.

Be strong!

Best wishes,
Stella
 

I got a bit of a hiatis-on only rocephlin for 2 weeks with flagyl next week added then adding zithromax in a week and a half.

I have been feeling a bit better for the last few days, even took my son to Superman 2 yesterday and enjoyed getting out.

Today I am tired and have pressure headache and will take it easy, want to see fireworks tommorow but we will see what is in the cards.

I am finding that each day is a new adventure. I never know how I will feel until I get up-so I make no plans and no promises. When I feel better I do what I can, when I feel lousy I sleep eat well and just enjoy-yeah right-my time in bed. It is hard for me to sit still-I am a people person who has always led a pretty busy life even with the fibro. Pushed way too hard for years though and paying the piper so to speak now.

anyway let us know how you are--

Cathy
 

I am still in the slump and still trying to figure out what is causing it and what I need to do about it or if I even care anymore. HA! I do. And I will get through this too.

I did hire the first person I talked to yesterday re: the new in home health care person.

It is very difficult to find someone around here that does a good job. I don't know if I will keep the new person yet or not. She thought the split pea soup would cook itself by letting it sit on the stove for 2 or 3 hours.

I am amazed at how many people can not read recipes since I came down with this.

And the deviled eggs have pieces of egg shell in them. I haven't decided whether to throw them out or just crush away.

It is a double edge sword. I am thankful for the help and as I am typing this confirming I need to continue my search for help.

But, on the other hand, I would like to be at a point that I don't need the help and am not there yet. This is discouraging.

I also am waiting to hear from my lyme doc. He said he would add other antibiotics after I had been on the rocephin for 2 weeks and all was going well.

I have yet to hear from him and I am on my 5th week of rocephin. I will try to contact him again.

I also misplaced his card letting me know when he would be in his office and haven't been able to have the strength to go through my paper work to find it. (along with three years of paper work that is behind)

Back to taking things one step at a time and dealing with them. Like Ashliegh Brillant use to say...I try to take it one day at a time, but several days are attacking me at once.

I am a bit like a duck right now and want to just bury my head in the sand. Hmm..perhaps we have the wrong name for them...ostriches bury their heads in the sand...leaving their arse showing.

OK that picture got my head out of the sand.

Health wise...things are the same. I will continue to take the abx because I do feel that it is helping. I am thankful for the IV Rocephin.

I have a support group meeting Monday at the local coffee shop that I started locally for those with CFS/fibro/Lyme/MS/MG, etc.

We have a lot of people in the area with the same symptoms and different diagnosis'. Hopefully they will show up Monday and it will be a good meeting.

And the PICC Line has moved more out of my arm. I think a just have a few inches left in the arm now.

Not sure what to do about this. I am careful. It was in the middle of the night last night that I woke up and caught it on something and noticed it was way to long on the outside of my arm.

It is the extension that is catching on things. But, it is also the extension that is allowing me to infuse myself and flush the line.

I feel this illness is just as much a mental challenge as it is a physical one.
 

I have been trying to find something for almost 3 years now that I can do to help bring in an income and have yet to succeed.

This condition is so inconsistant. It does need to be something I can do around my good days and not do for weeks at a time on not so good days.
 

The reason I am posting this log is in regards to my progress of healing.

I am on my 7th week of abx. I was impressed that I was able to almost multi task a little today with the letters.

Before, it was type out a little, rest, type out a little again and re read because I couldn't recall what I wrote from my line to the next, rest, address the envelope, rest, put on the stamp, rest...etc.

This time it was type the whole letter at one time while I lay in bed, get up and address the envelope, stamp it, then adjust the letter to the next medical center, address it and stamp it, then cruise on down to the post office.

Then lay down for 2 hours to recover. HA!

The point is that I feel like I am seeing little improvements.

Enought to want to continue on the abx in hopes of seeing more improvement.

I keep snapping my fingers just to check and see if that will help to turn my health around, but it hasn't worked yet.

Dehydration is back, but that seems to come with mobility along with the burning chapped lips. I am downing the water.

I also have been able to read for about 15 minutes the past two days and hope to do more tonight. Processing is still not up to par yet.

NP told me if I am active for 2 hours I need to rest for 4 hours. I am not sure about this, but am thinking on it. My body kind of makes me rest anyway.

She also told me to be sure and have sugar and carbs as my brain needs it.

I tend to differ here as my brain fogs up with sugar and carbs.

And I noticed that she didnt' read the material about lyme I gave to her as she didn't know what a herx was and said she needed to look that one up.

I know that if I had a vehicle right now, I would be very tempted to get in it and go for a drive.

But, I even make mistakes in the power chair when I am out and about. I can tell when I have pushed it too far.

Hard to believe that someone who use to race dunebuggies, motorcycles (in the desert) and gas hogs (on the street) now has a problem with a power chair at times!
 

I even think I had a decent conversation re: the city needs.

But, today was the end of the 4 days of being able to hold myself upright for short periods of time.

I am back to being flat on my back and thinking twice about walking that short distance to the bathroom.

I am concerned because I will not have any rocephin the next two days.

Sorry to hear things slowed down for you today - but sooo happy that you did have a few good days! And thank you for posting about them!!

Hopefully sunnier days will arrive soon and last longer!
 

I had a rough day of it today. I tried to make my mind and body function today.

I went to an interview for the new Starbucks that is opening near me. I am anxious to feel productive again and wanted to get my feet wet.

I knew I didn't have the skills yet to do the multi movement or multi tasking that goes along with taking orders and making drinks.

But, I thought they may have something else I could do...perhaps involving a computer and for a short period of time. (Boy, that wasn't very good thinking. I haven't been able to sit upright at my computer at home yet.)

I had difficulty filling out a simple two page application. I found that if I did a little and then let my mind rest, I could do a little more.

I found out that they were looking for 4 people to take orders and make the drinks.

By the looks of the line outside when I left, they are going to have about 400 applicants for those 4 positions.

I then came home and rested. I missed out today on a housing opportunity because...and it took me a long time to figure this out or accept it....I was not able to read through the information and fill out the forms.

That was part of the obstacle. But, at least I am at the point where I can see that was one of the obstacles. I will ask for help next time and admit that I can't do it myself.

I then tried to pay rent. I went to the office and found there were too many people there also paying rent. I didn't have what it took to deal with it so I left. I'll wait until it is clear and if I can't fill out the check I will have management fill it out and I'll sign it. It is not always like this.

I also went to the small county offices today letting them know I needed help with numbers and reading and forms at times.

I asked the guy 3 times in 3 different ways and he still didn't know what I was talking about.

I think there is something in the water here or air. It is so difficult to find someone around here who's brain is working.

Either that or I am not saying what I think I am saying.

I think a big part of this will improve once I have a new in home health care person that is competent. Those 10 hours a week make such a big difference.

It would be great to find someone that could read, fill out forms and work with numbers in the checking book too.

It will be great to be able to do these things myself again.
 

quote:

---

Originally posted by kam:

I asked the guy 3 times in 3 different ways and he still didn't know what I was talking about.

I think there is something in the water here or air. It is so difficult to find someone around here who's brain is working.

Either that or I am not saying what I think I am saying.

---

I can understand your posts just fine. I think people are becoming too preoccupied or perhaps (some) just don't care enough about others to communicate effectively.

Does that make sense? Somehow reading that it seems confusing.

Anyway, it's not you, it's them.

Sounds as though things are slowly getting better by your writings, even though you still fell bad.
I say that because you had enough energy and will to get out and go to an interview. YEAH!!

Sure wish I could lend a helping hand!

Take Care ~ Amanda
 

Not sure what is causing this and hopefully it is gone today.

It was one of those times when I didn't like being alone and wasn't sure if I needed to go to emergency or not. It was more than just being sick to my stomach.

The high pitch sound in my ears and the pressure in my head is still there but obviously not as bad as it has been as I am able to be on the computer right now.

I had the pain in my left eye that leaves it watering when the pain is over also.

And I had the lights that you sometimes get with migraines...all though I haven't seen these lights in a very long time.

The NP that showed up yesterday to change the dressing thought perhaps I was experiencing a migraine. If so, it is different than any migraine I have had in the past.

Whatever it was, it certainly shut the world down and my body and mind.

I am concerned about taking more IV rocephin today as perhaps it is a bad batch of rocephin and I am throwing out the beef and lentil stew the in home health care made two days ago in the crock pot.

Perhaps it was food poisoning.

Still waiting to hear if the zithromax was approved. It has been a week now. The pharmacy said that they had not heard back from the insurance company yet and would check on it yesterday.

I am ready to throw in the towel today and stop all meds again....but will most likely go ahead and take the rocephin if I am functioning well enough to give myself an infusion. I just up the meds that came in 100 degree heat almost 2 hours away were kept refrigerator on their way here. I remember thinking it was strange that the bag was not cool when he gave it to me this time but wasn't functioning well enough to really deal with it...I just made sure I got it to the frig.

It is a guessing game when the body and mind are running so low on resources.

It also surprises me on what things you can do and what things you can't do. Taking a shower and getting dressed and fixing something to eat for breakfast is most likely out this am.

But, slipping on some clothes from the night before and getting in the power chair and cruising around town for a short time might just work.

Last time I needed to stay on no traffic quiet streets...going down the main street of town with the bigger sidewalks didn't work..the noise and movement was too much.
 

I did not take the rocephin today. I will take it again in two days. If I have problems again then I will know it was the rocephin.

I was approved for the zithromax. I will start it tonight.

Able to sit upright for 3 hours...of which two were in a car today traveling to and from the pharmacy.

Walked a block in the am. Walked around Osh's hardware store in the PM for a short time.

Feel like I am back on track now. Glad whatever it was is over with.

Ordered more Bentonite Clay. Able to get water down me today too and food. And took an Epsom Salt Bath. Also had two glasses of green drink. Juicer froze up so using premix stuff.
 

I will have a new one installed tomorrow. The NP also ordered 3 more months of rocephin for me. I was pleasantly surprised as I have heard how difficult it can be to get.

It looks like I will be on rocephin for 5 days off 2, diflucan for one week off one week, actigal and zithromax...and of course the digestive complex (acidopholus)

After almost 3 years of being housebound for the most part, I am planning on getting out of dodge for awhile.

I sure hope all goes well. It will put a different perspective on this condition.

I would like to take the power chair with me but am not sure how that is going to happen at this point.

I can get it down south, but out of state is another obstacle.

My parents do not have a vehicle that will transport it.

It will be nice to be in a place where the air and water are good for a short time.
 

The PICC line installed locally was very painful. I also was not able to administer the rocephin due to pain.

Finally had one installed while out of town. All went well. Learned that the old line I had was only supposed to be good for one month....I was able to get 3 months out of it.

Learned that some arms do have a nerve problem. She put the new PIC line in the other arm again, but in a different vein.

It can last up to a year.

I also have 3 more months of rocephin approved. This is good.

Saw LLMD, but don't recall a lot of what was said. I was very low functioning.

I know I am to start Mepron soon. Need to find someone to take me to pharmacy out of town.

I had only two days out of two weeks where I was not able to ride in the car and go out to eat with my Dad.

It was great to be out and about. I did well as long as I stayed off of my feet. My body was strong enough to hold itself up for the most part with reclining after 1:00 or 2:00 pm.

I even helped to drive myself home part of the way. Still not normal but able to fake it. HA!

I am not happy to be home. Hot here. Too hot among other challenges I would prefer not to have right now.

High pitch sound in my ears and pressure as I lie down and type this. 4 am and still not able to sleep.

Took rocephin 7 days a week while gone. Will discuss with NP about continuing this as it may be why I was able to have so many days of being able to ride in the car and be out and about.

Need to find good in home health care now. My parents were very good. This made such a big difference and one of the reasons I left home.

Glad it worked out.

Able to empty my mom's dishwasher one morning while there without fatiguing too much to continue for the most part.

Tried to make a spinach salad one evening, but it was too much and wasn't able to eat afterwards.

I have mixed feelings about being on my own again with this. There is good and bad about having family nearby.

Trying to find a place on my own near family as a compromise of actually living with them.

Will be so glad when I am well and back to work.

I considered applying for a special ed assistant while there, but it is not realistic at this time.

The good news is that a friend came over and stayed with my awhile. I talked her through the Rocephin infusion and all went well.

She also brought over a crock pot of roast beef for me and I was able to eat a little of it and it stayed down.

Earlier, water would not stay down so this is an improvement.

The NP called and said she thought I did better at my parents possibly due to the cooler weather.

She reminded me that we started the rocephin in the Spring when it was cooler and I had a few good days or perhaps a week or two then also.

The druggist said it would cost him $700 a bottle.

I tried calling my lyme doc but his message machine is full. I will try again later. I know if I could find my post card of his schedule, I will know when he will be in the office.

I'll also try emailing him.

Pooch

 

I'll try to get a note off to them today to let them know I am still interested along with the two ink cartridges I just emptied in my printer.

I also received a newsletter from PAWS with a CAUSE and was thinking of contacting them also.

The more lines I have in the stream, the more odds I have of obtaining a service pooch.

--------------------------------------------

I just talked to a new person regarding in home health care. I have been putting this off because I would really like to be able to do my own household chores, etc.

And because the quality of help in this area has been very poor in the past. This lady looks promising. She is going to start tomorrow. I hope she is good and able to stay with me until I no longer need someone.

We are still having triple digit temps here. I am looking forward to the fall and being able to do more because the weather is cooler.
 

I was gone about an hour. I then came home and laid down for an hour and a half or so.

I then got in my power chair and went to the hardware store. After being out in my power chair, I came home and noticed that my mind was still doing OK.

I was able to multi think so to speak. I was able to think in my head that I would make a tuna fish sandwhich, have iced green tea to drink, and do it while standing on my feet.

There are times in the past when I needed to have the sandwhiches made up ahead of time by the in home health care. During this times, all I was able to do was get to the frigerater and take them out.

So, it does feel good to be able to do these things. The in home health care person had pre mixed the tuna fish salad for me so it was all ready to go.

In the past, I would have needed to lie down for an hour or so before being able to get in my power chair and fix something to eat or just eat for that matter. (After being out and about for an hour that is)

I also was able to sit upright and write out a couple fo thank you cards yesterday. That wasn't as easy...vision a blurr or double and mind in a fog. But, there were times when it was too much just to get to the store to purchase them much less get them in the mail.

I am on my 16th week of rocephin. I am still waiting to here about the Mepron. I was able to leave a message on my LLMD's machine regarding the matter. And I did contact the pharmacy, but have yet to hear how things are going.

I am not sure if I have finally turned the corner, but I certainly hope so.

The plan today is to do a little, relax, recharge, recline and then try to do a little more.

I am hoping to get the curtain rods up and the curtains today. I have been here over a year and have yet been able to do this.

NOTE: I have also had lots of help this week which I need to consider. One lady went grocery shopping for me. The in home health care has been doing things around the house...she works 10 hours a week.

And another lady made two big crock pots. All this help makes a world of difference.

And the weather is in the 90's now compared to triple digits.

I am still in a fog of what I just wrote so that needs work.

I'd also like to see if I can read today. But, will wait until I rest my mind and body first and take the rocephin.

The mixed feelings are because it is good to be able to do these things. But, I do miss being "normal".

I wonder what "normal" will be once I get there? Just what am I going to do with my life once I am healed? I most likely will go back to teaching. I also need to take classes now in order to maintain my credential and spend time either substitute teaching or volunteering.

I'd like to teach in a positive environment where the focus is on learning and ways to help the students learn.

I'd love to teach in a place where we can be outdoors more and around nature. I'd like teaching about nature to be part of the classroom.

My hope is that it will give me more independence and I will not be as concerned about getting futher away from home.

The stray cat that has adopted me amazes me. He knows when I am running really low on resources. He will stay close by my side. He will meow when I am not staying down during those times. He is a good indicator and reminder for me not to push myself during those times.

My hope is that a service dog will have this same intution and we can work together.

I tend to go into overdrive and try to override my body and mind. I am getting better at taking better care of myself, but it is years of habit.
 

I am back to being a turtle today and so low on resources that thinking is not doing well today either.
 

The good news is that my first thought wasn't that it was from my body. I hadn't realized until the earthquake that I haven't had that type of feeling in my body and had for a long time now. This is good.

I had several days where I was able to get out and about for short periods of time in my power chair.

This has been followed by several days of testing the couch and bed out again.

Tried to walk 10 minutes today but it wasn't working very well.

I have had thoughts of how nice it would be to have a service dog to share this time with since I am down so much.

I still visualize the dog and I going to the classroom together when I am back to work.

Not much new here. Just wanted to touch basis. Looking forward to being able to get out and about again soon.

Ordered ADP today. Hope it helps to keep the yeast, fungus, etc at bay. It is to replace the diflucan.

Still waiting to hear if the Mepron went through.

Taking the IV Rocephin 7 days a week now at 2 grams. I am on week 18 tomorrow with the rocephin in general.

Also still waiting to here from attorney re: the workmen's comp case, medical retirement papers, and the other forms I need to fill out for work.

I hope it is all not just wasted energy. The other teacher is also filling out this forms as suggested by our supervisors.

But, docs continue to not be able to make the connection between our symptoms and work.
 

Both go down fairly easily.

I picked up the Mepron Friday, but was doing so poorly I wanted to wait until my head cleared before adding another drug.

I also have a friend helping out with the household chores. The new in home health care person wasn't working out.

It makes such a big difference if I am able to get consistant, quality help.

I also was able to walk down the block and back today. It felt good to be out and about and on my feet for about 30 minutes.

I also heard from the attorney's assistant. I can get the paper work in now when I am able. He also said that as far as he knows, the workmen's case is not closed yet.

The next step is for a disposition. I am not sure what that means.

Printer is still down. I sure miss it.

Another friend was going to purchase a home and rent it out to me. She needed to invest her money in something that would have a higher yield than it is currently getting.

The house she picked out was made especially for a person who was in a wheel chair. It was really nice.

But, I just don't have the income to keep up my end of the deal right now. Utilities alone would eat up at least half of my income.

It was so nice of her to consider this. I am still amazed. It would have been so nice to be in a home again.

I will be so glad when I can purchase my own home again.

Connie sent me a monthly chart that I am using to try and see if I can see some kind of pattern to these ups and downs.

I have also gone back to the pill box...only a bigger one this time and a chart. I am hoping to be able to keep track of what I have taken and what I haven't taken this way.

When the mind goes...it is really tough to recall if I just took a pill or not.

In my mind, I am thinking I have times of feeling like I am getting back on my feet and just need to build my strength up every 3 or 4 months.

But, then it doesn't last. This happened even when I wasn't on meds or had a dx.

I'd also like to know how long these improvement periods last. I think it is usually about 2 weeks.

I am still taking the bentonite clay baths and epsom salt baths. I do believe they help.

And I continue to need to watch the diet. I tried adding raisin brand toast to my poached egg this week along with having a milk shake, pumpkin spice latte, crackers and oysters, raspberry and peach ice tea, and some other things with sugar in it this week. I paid for it. I had the pain in the eyeball and watering again.

BAck to if it is white it ain't right food intake.

Starr sent me some papers from Dr. C's office that I am trying to read a little at a time. They look very promising.

I'd like to cruise on over to the post office in my power chair this afternoon, but will not know until I try if I am able. It is iffy right now.

It seems if I have help with household chores, it frees me to do a little each day.

If not, it is all I can do to make sure I eat 3 meals. And even at that, those meals are not good..crackers and oysters, applesauce and toast and other low task meals. Not good.

One of these days, I will be able to take care of things around the house again. I am looking forward to it. I do miss going to the cupboard or the closet or the drawers and being able to find what I need because I know where I put it.
 

I also hope to be getting the B12 shots 3 times a week now that I have someone to give them to me.

I currently am getting them once a week when the NP is here.

I pray that you regain your health.
Kathy
 

Yes. The heat shuts me down. I have learned that having a bag of ice on my head (I put a hat over it), and a special scarf around my neck to keep me cool helps.

I also know there are cooling vests and wrist wraps that help to keep you cool.

I haven't invested in these yet.

IT is nice to have the cooler temps. I pray that your health returns soon too.
 

And I had difficulty keeping the power chair between the lines while on the sidewalk and ran over a few garden beds.

I kept saying to myself....too much apple cider vinegar.

I made it. Not sure if it was wise to push myself when I am running so low on juice myself...but I really needed to get out of the house after being closed in over the weekend and I don't know for a how many days last week.
 

The good news is that I heard from Carol with Canine Support Team. She wanted more information on my financial situation.

She is considering putting me in for a grant. Not sure how all this works....just hope it works!
 

But, neither one is showing up so I am posting again.

I have had 14 days of being bedridden for the most part. So, I have decided to take an abx holiday to see if that helps.

I called and left a message with my LLMD regarding the matter, but could't tell you what I said. The mind just wasn't working well.

I sure hope this helps. I also received an email from CST regarding applying for a grant for the service dog. This is encouraging.

And I received some paper work for housing near my parents. This is also encouraging as I like the area they live in. The air is much cleaner and there is more to do there.

I also have a new in home health care person. Hopefully, this one will work out and stay awhile. The last few have gotten full time jobs or thought they should get paid for watching TV. HA!
 

What is that book about Green Darkness? I think I may have asked you before, but can't recall if I did and what the answer was.

I received another email from CST. She said they have all they need and that if the grant is approved, the cost of the hotel room, food, dog supplies and two week training will be paid for.

This will happen in February. My birthday month. What a gift!

Oh Happy Day.

I heard from LLMD. I am to cut back on the meds. Instead of taking them 7 days a week, I am to take them 3 and 4 days a week.

I don't even think I thanked him when I called. I had gotten up to get the phone and that pretty much wiped me out. That and trying to pretend I was "normal" HA!

I also received another form to sign from work. It was in regards to the voluntary resignation.

That one hurts. I don't want to sign it. But, on the other hand...it has been 3 years.

I received an email from one of my supervisors. I had sent her an email about the service dog.

She said she continues to hope I will be able to return to work and bring my dog. :O)

I had the same idea. But, as time goes...I wonder.
 

It feels good to be able to do these things.

I decided to get back on track with the meds. Took rocephin and mepron today.

I sure hope it doesn't knock me off track again.
 

Just wanted to record that things are improving. I have concluded that the main problem was that I over did it while visiting my parents.

I know that it can take me two weeks just to recover from the visit to my LLMD's down south.

I also have good, consistant help around the house now too. That makes a big difference.

I have been able to get out every now and then for about an hour in the power chair and did walk a block and back today.

I still spend a lot of down time on my back.

But, am able to have some mobility lately. Happy Camper time.

Even went out to eat the early bird special at the local coffee shop this am although it was not easy. It still felt good to be out and almost normal.

I wonder how the local businesses will handle a dog with me if it all works out.

The town has been great with the power chair. Hopefully, they will be just as great with a service dog.
 

She was out 9 months and then returned to work. Said she usually only makes it 3 days out of the week at work and has taken vacation time or doc ordered her to stay home at other times.

She was dx with fibro and diabetes. She too has a workmen's comp attorney.

I sure wish we could find a doc who could make the connection between all of us and help us to regain our health.

The month of October was not good. Head pressure, high pitch sound in the ears, brain not working, mobility not working, weakness, it seemed like no let up in the exhaustion part.

Not sure what is going on. Just hope Novemenber is better.

Scared myself last few times I tried to get out and about in the power chair.

Crossed street without being able to process several things at once to make sure it was safe. Single tasked. Car full of teenage boys came at me fast while they were turning into a 7-11 type of market off the main street.

They saw me just in time to swerve and miss me. I felt so vulnerable and so close to being road kill as I crossed that side street.

Staying home for a while until someone can come with me or my brain can deal with more than one thing at a time.

I am so looking forward when I can be out and about again and have strength and a clear head.

I am not a happy camper when I am this low functioning.

Need to talk to in home health care person too. She has been coming at 7:30 am. This is OK if I have had a good nights sleep. If not, it is not OK.

I am afraid this is going to be a deal breaker if she isn't flexible.
 

Rested. And then took off in my power chair. I started feeling the usual fatigue for lack of a better turn set in. Checked my watch thinking my hour must be up. Discovered I had been out and about for 2 hours.

I am not sure why I am doing better today. I did not take any meds yesterday. I haven't taken any today yet. I am assuming my body just needed a rest from them.

If this thing can cause my hearing to turn on and off....why not the colors?

Smells also are something that kicked in a while back.

 

I just went through a discouraging time again and feel like I am finally getting back to myself.

I also want to take inventory of where I am with this condition now that I can.

I woke up with the head thing again....took 2 excedrin and am OK now. Not sure what is causing the head thing....sure wish it would go away.

I have difficulty describing it as it pretty much shuts me down. Once it is gone I can't recall what was going on either.

I also wanted to eat around 5:30 last night. I needed to cut a slice off of the ham, take the skin off of the yams and put everything in something to put in the oven.

I couldn't do it. Finally, at 8:30, I became normal and was able to do these things.

This am, I was able to fix bacon and eggs, put the dirty dishes in the sink to soak, and take the cuttings outside that I want to pot later.

I was feeling pretty spiffy because I was able to do these things. Then, I started in on the book shelves. I wanted to remove the clutter so they could get dusted and just look overall better.

Things just stopped for me again. I think it is the fatigue. I seem to only be able to mult task for a short time.

At least I am able to figure these things out this am and not be in that place I have been for several days or weeks.

I started taking the IV Rocephin every other day 4 days a week. Today is the day I am supposed to take it again. But, I hesitate. It is nice to have my mind back. I think the rocephin may be part of the problem at this time although that doesn't make sense. It was part of the solution for the last 4 months or so.

I also am not taking the Mepron. It too seems to go to my head at this point and shut me down to a point that is not good for too long.

I think it is time for an abx holiday but I do not wish to waste the rocephin. I will check the expiration date on it, take it before it expires and then see if it doesn't help to stop this abx stuff for a short while after I talk to my LLMD of course.

The clay detox is helping, but I need to be able to do it. It is a struggle too.

I do have cycles where taking an epsom salt bath and doing the detox can be a routine. Then, I find I have to just wait it out and not matter how much I try to force myself it doesn't work and only makes things worse.

It is the same with trying to walk everyday for 10 min once or twice a day or 20 minutes once or twice a day.

It feels like something just woke up inside of my body too. I guess you could call it twitching. It affects different parts of my body.

I have had this before. Then it goes away. It seems to be during the times of lowest functioning or is it because I am laying down and able to feel it more?

And the short burst of being too hot in the evenings are back. That seems to come and go too.

My body seems to have its own thermostat. I feel like taking all my clothes off and stepping outside to feel normal.

But, I know if I wait it out, my body will go back to being OK. It happens between 7 pm and 9 pm I think each night. I haven't really noticed the time but have considered it to see if it happens around the same time each night as it did in the past.

I tend to want to just ignore these things and hope they go away. The problem is that they are not going away and I feel I need to deal with them.

It is good at least to get to the point where I am able to write about these things.

For many weeks now, I haven't been able to do this.

A friend dropped over and asked me if I wanted her to order me more clay or if I wanted to do it.

She gave me the information.

I just kind of stood there with a blank look on my face trying to come up with something to say.

I later realized that it was all I could do to just wait and see if I was able to do the clay detox that night as I was hoping to or not.

As it turned out, I was not. I am hoping to get to it today.

The thought of dealing with something that wasn't in the moment was more than I could deal with at the time.

This from a person who use to constantly have ideas on her mind and also be handling several things at once physically and mentally.

Skills that I took for granted and thought everyone had at the time. WRONG!
 

I even hadn't changed clothes and have been sleeping in my sweats.

A tough way to conserve energy, but it works.

I will be glad when I am putting fresh clean clothes on again every day and able to take a epsom salt bath every other day or a clay detox shower once again.
 

Something I was not able to do yesterday.

I just hope that this mornings activity is not it and I will be able to do more once I have down time and the brain kicks in again.
 

I had been doing foot baths and body baths before.

This works better. I did have a little redness in splotches when finished. I left the clay on an hour this time. It still was not dry in all areas.

I just really like the way my body feels afterwards. It almost feels normal.

A friend called tonight to tell me she has ordered a case or a half of case for me of the clay.

Boy has this condition changed my life. It is Friday night and I am excited about getting out of the shower after a clay detox!

I think I found something that is working!

This clay is used on horses and cattle too for lame legs, etc.

I just know I feel like kicking up my heels and running around in the meadow.
 

I took 1/2 tsp of mepron with my meal. Shortly after, my head was swimming and the weakness set in. I wasn't able to sit upright anymore.

The NP suggested I try taking the mepron at night.

I think I am finishing off the rocephin this week.

I am ready to get off of drugs all together at this point because it seems I feel better when I am not taking them...but then again...the brain is not thinking clearly.
 

It seemed my head was almost clear and I was able to do a little around the house until I started back on the IV rocephin and mepron.

I am not going to take any medication today to see if that helps.

I am not a happy camper. Don't know what to think or do.
 

I'd also like to be able to pick up the glass splitters on the floor from the aladin lamp I pulled off the shelf and broke last night accidently because the mind and body were not working together.
 

It has been for at least 3 days now. I also had the same stuff going on in the stomach or intestine area yesterday.

It is not a big deal. But, it does seem to happen during those times when I am the less able to function.
 

I am not sure what the next plan of attack is. I will talk with LLMD soon.

I waited until 10:30 am for the house to warm up enough to be naked and spread cold clay on me.

I should have waited longer. HA! I am cold.
It took an hour last time for the clay to dry. I have been heating the house since 6:00 am. The heater is not working very well.

I also took a teaspoon of mepron this am and will take another this evening. I seemed to be OK this time. Time will tell.

I have a final appointment with the workmen's comp attorney today. It will be a miracle if they are able to relate this to work.

The only thing I have is that several of us came down sick the same time with the same symptoms. Doctor's are able to figure this out or help us out. The others are not willing to pay out of pocket and see a lyme doc. They do not feel it will help there case. They are OK with the CFS dx. They also have worked long enough that they will get medical retirement benefits so finances are not as big of a concern as they are for me.

I just hope I don't go in a slump after todays meeting.

I talked to the NP yesterday about what the LLMD said. She has been able to get the IV Rocephin for me in the past. She said she will talk to her doc but it looks like they will no longer be able to help.

When I told her my LLMD wanted the blood work every two weeks she said I needed to find another way to get the blood drawn.

When she does it, it takes her at least an hour to get it back to the lab. This is not good. It means the blood work may not be valid. AFter 6 months, she tells me this. I thought she was only doing the blood work once a month because my blood work was fine and she felt we didn't need to draw it every two weeks. You got to wonder about things sometimes.

Local docs are still not working with my LLMD and the local lab will not draw the blood unless they have an order from local docs. So, this could be an obstacle.

LLMD would like me to continue on IV rocephin, mepron, and start back up on the zithromax.

At this point, I am not sure how these drugs will be provided. He said something about sending me paper work.

I was able to write down what he told me this time although it was recorded all over the page just as my mind was working that moment. At least the hand, processing and writing skills were working.

He also said he wanted me to order the podipatches, get cold water fish oil and artemicin.

A short time after I talked to him, a friend from church dropped by. I told her what he said. She wrote me out a check for $300.

I ordered the above along with more acidopholus. It came to $314. It was so nice to have the funds to get these things this time.

Along with the podipatches, I will have a free bottle of something to try out. I am hoping it will help also.

I believe the colostrum I was taking helped, but ran out of it.

When I told the NP that the doc was treating me for babesia, she said she had never heard of it. This told me she has not been doing her homework. I have given her the summary of the conference, PA booklet on lyme, and Lyme Times.

She still doesn't understand herxing either or the waxing and waning of this.

On the positive side, she does have a "it will be OK" attitude and is pleasant to be around.

She also does a good job of changing the dressing on the PICC and drawing the blood.

The clay on my face is beginning to dry now. I can feel it pulling as they say on the web site.

The rest of my body is still very cold and on the verge of shivering. I may need to jump in the hot shower before this dries.

The lady who is taking me into see the attorney wanted me to go to Costco to do some shopping and then the Whole Food Store and then the attorney.

She is the lady who helps out around here. I sent an email back letting her know that I needed to see the attorney first before I was drained of all energy.

She also knows I only have $100 this month of which $20 of this will go for gas money to get me to the attorney. It will take 4 hours of our day just for the attorney visit. Of which 3 hours will be on the road.

She said she thought the stores would be too crowded after the attorney's visit to do these things.

She feels the local store is too costly and I need to shop at Costco.

I know she is just trying to help, but she is one of those people who just doesn't get it.

She said she had depression for a few months and I think sees this the same way. She just feels I need to get out of the house.

ME too! But, she doesn't realize the price I pay for doing this. I need to do things in bite size pieces. Normal is out most of the time.

I am glad I was able to have a phone consultation with the doc this time. It was so much better than having to find someone to take me and the power chair to the train station over an hour away, get on the train for 6 or more hours, (big difference with the power chair compared to being on foot), get off the train in BAkersfield, get on the bus, get off the bus in Long Beach, take the taxi to my friends, schedule a time she can take me to the appointment, and reverse the process back home. We also have to find someone to load and unload the power chair with the ride to and from the train station.

I need a ramp.

Cost wise. It helped out a lot with the budget too.

I so miss not having my own wheels.

I am so thankful for those who have helped out and have really been a help.

I received a copy of HopeKeepers this week. A lady who has a yahoo group was interviewed by them.

In her interview she said ``Everyday I feel like I have a horrible case of the flu, complete with deep body aches from head to toe, weakness, dizziness, nausea, headaches, memory loss and difficulty thinking. Before, I used to work even when I had the pneumonia, but this is much different. This is debilitating, beyond mind over matter. Now every movement, every thought, and every breath takes energy as if I am trying to climb a mountain with people trying to pull me back down.''

``Nevertheless, the power chair is not what has kept me from returning to work: it is the unbearable fatigue, weakness, pain, dizziness, nausea, memory loss and cognitive impairments that kept me down. I wanted to go back to work more than anyone else wanted me to.''

It was good to learn that I was not alone with this. It was good to have someone express what this is like. The only thing she didn't mention is how this waxes and wanes within the same day, hour, week or month.

I also am amazed at how similar MS, Lyme, CFS, Fibro and other conditions are in symptoms. I continue to believe there is a connection. This writer has been dx with MS.

Well, I am want I call overdrive as I write this.

It means I am pushing my body and mind when I should give up and go with the flow. I am trying that mind over matter thing.

But, it is not working. I'm at my limit.

I just got back from the workmen's comp attorney's office. I signed the papers. Then got on the computer and was reminded about Dr. Peterson in Arizona. He is the one doc that I was told I needed to see when I first came down with this.

He is from the Valley Fever Center. I just never figured out a way to come up with the energy and money to go see him.

I still believe that there is a connnection between at least 3 of us at work who came down sick at the same time with the same symptoms.

But, after seeing 35 docs before lyme was ever dx and 3 years later....I feel defeated in this area.

Time to let that go and continue to deal with trying to get my health back.

Don't know if I posted this all ready. My earlier post is not showing up yet.

Head is spinning. It seems the mepron goes straight to my head. I also have weakness and need to stay reclining for the most part.

I also have the hot flashes in the evening.

Wasn't sure if it was the mepron before because I was taking rocephin too.

But, this time...I am just taking the mepron.

Oops. I also took the oil of oregonal today. OR ADP I believe it is called.

Did I mention the high pitch sound in the ears too are back? Someone turned the volume up again.
 

I didn't think I would have much reaction since I was doing the clay and epsom salt detoxes too. But, it looks like a lot of something was going on.

The middle patch needs to be secured closer to the foot. It had the brownish black color but not the gooey stuff that the heel and ball of the foot had.

I sure hope this helps.
 

But, getting something to eat and any movement was and is very difficult.

The main problem today is weakness?? The body just seems drained. No strength.

I tried to get out because I had stayed down all of yesterday. I thought I would be OK for a short time in the power chair.

It was a very short time. AFter 20 minutes, I had pushed the envelope and wished I had that service dog to help get me back home.

I am back down now and plan on staying that way. The in home health care person is here fixing some chicken soup so food will be easier today.

The soap sure smells good. It is easy to eat also.

I have noticed that I am back to eating soft foods again. I threw out the left over turkey because it was too difficult to chew and swallow.

Perhaps I will be able to have turkey and cranberry sandwhiches at another time.

And continuing the foot pads.

I hope to do a hot espom salt bath today too, but we shall see. That is a lot of trouble when I am this low on strength.

Once, I let it go...I was better. I figured if just thinking about it was too much...getting up and getting it together enough to get there certainly wasn't going to work.

Pressure in the head again today. It looks like one of those stay down and just get 3 meals in ya day.

Unless I want to beat myself up with trying things and not being able to do them.

I would like to try that epsom salt bath today.

I also would like to mix the clay so it will be ready when I am ready to give that a try again.

The high pitch sound in my ears just dropped several decimals. It is as if I just put in ear plugs to lower my hearing.

So strange.

I continue to feel like a 153 year old lady when I get up and try to move about. Guess I will not be doing a Scottish Jig today.

Learned that my Lyme Friend that is now at least 6 hours away may be purchasing a home an hour away. This may be good. Better if I had my own wheels.

Lord, when I was thinking I wanted a convertible for my next vehicle...a power chair wasn't really what I had in mind.

I'll try to be more specific next time.
 

I took two excedrin extra strength and am dragging my heels about getting up and taking the mepron.

I think I will get dressed and do a little around here first. I'd like to check my mail and address a Christmas card or two.

I'll call the doc tomorrow to check in.

It seems when I take the mepron I just have to lay around and watch TV or browse the computer to take my mind off of things.

It is all I can do to make sure I have eaten.

I had a very difficult morning yesterday while the in home health care person was here. I gave myself time out in my bedroom.

When she came in to give me the B12 shot, the sound of the paper russling, her whispering to herself what she needed to do, tthe amount of time it took her to get the shot ready, the bed moving everytime she bumped into it, and her cleaning my arm...was too much.

It all was magnified. I felt like a high strung cat that needed to hang from the curtains to get away from her. Holding my body upright for her to give me the shot was too much so I laid back down.

My head was also not clear. Hard to describe what that was like.

At least it is nice and quiet here today with no movement in the house.

I tried to move when she was here yesterday and my body started shaking inside. I was very cold.

I asked her to turn the heater on and make a hot cup of tea to help. She turned the heater on and then opened the screen door letting in more cold air and made a cup of tea that was room temperature.

I asked her to pick up some berries and plain yogurt for breakfast at the market. She picked up the yogurt but informed me the berries were too costly. (Not her choice...she was not paying for the food)

She said she purchased raw cranberries instead.

I had no patience yesterday for her. I thought she was making things worse.

So, I went into my room for time out.

The good news is that the kitchen was clean when I came out and there were deviled eggs in the refrigerator.

I thought about the term lyme rage and wondered if that is what I had under the surface yesterday.

I certainly had no sense of humor yesterday am.
 

I also wanted to add that the uncomfortable wave of heat was very minimal last night.

It only happened once and wasn't as hot or as long as previous evenings.
 

Someone is bouncing a basketball outside and it is very annoying. This would not bother me like this if I were well.

When I saw the NP yesterday she said she would try and get a hold of my LLMD.

She also suggested I stop all meds until we have all of them to work with.

I am waiting on the rocephin and zithro.

I did stop the Mepron and Arteminicin today.

I tried to call the doc to run it by him first but his message machine was full.

I hope my NP faxed my test results to him or at least got a hold of him.

I left a message with him Tuesday regarding still now receiving the paper work for the meds. I forgot to tell him I asked the NP to fax the test results to him and to let me know if she doesn't follow through. Not sure what to do if she doesn't follow through..she evidently hasn't the past 6 months. I may need to go elsewhere to get the blood drawn and copies faxed to my LLMD.

Tough day yesterday with in home health care provider too. I really need to replace her but know how difficult that is around here.

I was able to get out in the power chair for about 45 minutes today. It totally wiped me out.

I didn't try to purchase anything or make any decisions or talk to anyone. I just cruised and enjoyed being out.

My nerves seem to be on end lately. The body is running dangerously low.

I was able to get dressed and eat breakfast and heat up some soup. This is good.

I am lying down as I type this. My body is beginning to shake inside. It is too much. I need to veg out about and just breath.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
I am very frustrated. I would like to be able to get Christmas Cards out and finish my Christmas letter that I have been working on for quite some time now.

I got a call from the other teacher who came down sick when I did 3 years ago.

She asked if I needed any help with anything. I told her about my Christmas CArd problem. She has the same problem.

I would like to be higher functioning than this after two years of treatment.

Is it the mepron that is causing me to be so low on resources?

The the teacher says she is low on resources too. But, she has been traveling a lot lately and visiting others for months now.

I was prepared to not fight it and take the last bottle of mepron. But, I need a good health care provider in order to do this if this is what it is going to be like.

I think the most frustrating part of this is loosing a lot of my independence.

I had no idea what skills I had that I took for granted. I had no idea how many others that are seemingly walking around normal are really struggling and perhaps don't even know it.

The quality of their work certainly shows it.

[This message has been edited by kam (edited 14 December 2004).]
 

I have coffee beans on the kitchen floor and half and half that I spilled.

I hope to be able to clean this up tomorrow.

I sent an email to the in home health care provider and told her not to come this week.

I am hoping if I can find some good pain meds I will be able to take care of things around the house myself. I not sure what is causing me to be so low functioning.

But, I do know about 3 excedrin and some caffiene help at times and then other times it does not.

I still have the high pitch sound in both ears too and the bloating. Those are really small potatoes compared to not being able to do household chores or sit upright to do simple tasks etc.

I was OK while I was out today. I was able to make eye contact with drivers before crossing the streets in the power chair. The mind was working today. This is good.

I tried to take an epsom salt bath again tonight but the water is yellow/reddish again.

The cold runs clear so it has to do with the hot water heater. I filled the bath 3 times and it was still not clear.

I would have never guessed that just trying to take a bath in the evening would take up my whole evening before I came down with this.

I had better luck when I hiked SnowMass in the Rockies and slipped into the natural hot springs and washed my hair with shampoo that was not biodegradable. I will never do that again.

Wash my hair in a natural hot springs with non biodegradable shampoo that is. I sure hope I am able to go back to SnowMass and wash my hair in the natural hot springs again.

It was a beautiful hike...I walked through wildflowers barefoot, saw pussy willows, crossed snow covered streams..with hiking boots on and woke to the smell of fresh coffee and the sound of the crackling of the fire.

I don't recall the body feeling any worse for the wear. I just recalled enjoying every minute of it. Even the summer rain storm on the way out.

God I hope I am able to do that again.
 

I called and left message with LLMD to let him know the NP is no longer coming and did not fax the lab test results to him because she wanted to talk to him first about further treatment.

Doesn't make sense to me why she can't fax the last 6 months of lab results to him and why she hadn't been doing this all along or at least giving them to me to fax.

So, as to date...I am detoxing only. Podi pads are getting lighter with each use. Still taking clay detox mud baths and I am out of epsom salts until next month.

I no longer will have in home health care or the NP coming and going. I like this idea.

It will be OK as long as I am able to do a little, rest and then do a little more.

I have been taking 3 excedrin to start the day. I am not sure if it is the excedrin or if it is because I am off of meds or if it is just a waxing and waning time.

But, I am able to do a little right now and am enjoying it.

I also want more. I would like my health to return. I would like to know why several of us came down sick at work at the same time with the same symptoms and are still struggling and not able to work after 3 years.

I would like workmen's comp and medical retirement to at least be approved so I will have the funds to continue to work with doctors' and get my health back.

NP suggested that valley fever could be a part of this picture. I tend to agree. She also said that many of the docs here do not do the Igg IGM testing for valley fever either. This is true. Finding a doc who will do this is almost impossible. A lot like lyme disease and other conditions.

You have got to wonder what is going on with the medical field.
 

I am thankful for it, but do not want to start the mepron, artemecin, and zithro until I have hired a new in home health care person and know that if I take a dive they will be able to handle it.

I am very appreciative of my LLMD. It is nice to have a professional on your team who has the same goal you have and goes out of his way to meet that goal.
 

And if so, I need to work this out. In the past the local lab would not draw blood unless it was ordered by the local docs.

And the local docs would not order blood work...there dx is CFS/fibro and they are sticking too it.
 

I lasted about 20 minutes est. before it was too much. I should have taken my power chair. I was trying to be "normal".
 

She just kept looking around. She ignored the fact that I was slumped in a chair in the corner and having a rough time of it.

I rested enough I was able to get up and tell her I was walking home. You would think out of all people she would have a clue.

I was reminded why I had stopped going places with her and doing things with her many months ago. This is good. At least it happened while I was across the street from home instead of across town or out of town.

This was after taking 3 excedrin to start the day and waiting two hours.

I have been camera shy for 3 years now. Now some of my on line friends can see what I look like.

I also had wanted to color my hair first but saw part of the writer for the Maker's Diet and decided now was not the time to add more toxins to my body.

I also was able to sit upright at the table and do a few Christmas Cards. I am hoping to address them and put stamps on them tomorrow.

I am still waiting for the an in home health care person before I start the abx.

I have noticed the high pitch sound, pressure and head stuff picked up a little today...but for a short time and not as bad as when I was on the abx.

I still need a lot of down time. I tried to read a little today and found I was only able to read very little.

I am hoping to try to read more again later tonight.

I did no housework today. I did walk to the park and was on my feet probably about 20 or 30 minutes. This is good.
 

I just find them really strange. I was just laying down playing cards on AOL's POGO and the wave washed over me several times and then left.

Don't know why this happens. Just know I sure don't like it and will be glad when it is gone. I get so sick, I can't really do anything until it passes.
 

Had the high pitch sound in the ears and the pressure in the head. Had the body overheating in the pm again.

I was better for a short time in the late evening. I was able to get the dishes in the dishwasher and soak the pots and pans.

The excedrin did not seem to work today.

The refrigerator is bare so I hope I am well enough to get to the grocery store next door soon.
 

I then cruised home, rested and walked to Starbucks. A couple of people at Starbucks wanted to talk to me so I faked it.

I was gone for about 45 minutes. I haven't been able to do anything else today, but tomorrow is another day. I am thankful I was able to get out in the power chair and be on my feet for about 20 minutes...10 minutes up and 10 minutes back.

I did walk as if I was drunk on the way back, but oh well...I probably just blended in with the rest of the gang around here.
 

So, I am backing off taking 3 excedrin each day to get started.

I was able to be out and about in the power chair for an hour and a half yesterday. I dropped off Christmas Cards at the post office. I kept things simple while out.

I also was able to pick up a few things at the grocery store.

I also was able to do the clay detox.

I am hoping to be able to get a few things done around the house today instead of using my energy to be out and about...although I would prefer to be out and about.

Hopefully, I will be able to do both next year.
 

i feel your pain and suffering. i know it. sorry to hear how much it has taken away from you. were you a teacher? what else did you do?

based on some of your descriptions i think i know where you live, and i see the same dr.

i'd write more but difficult at the moment.
regards
paisley
 

What meds are you on now?

Yes. I am a teacher but since the 3R's went out the window I really like to keep that under cover now.

I would go up to Grants Grove in the Sequoia's and rent a cabin on those 3 day weekends summer, spring, fall and winter.

Winter was my favorite. I would have the place almost to myself at times and blaze my way to the cabin with snow piled at least 6 feet on each side.

I miss those trips and am looking forward to doing them again.

I also miss walking along the ocean.

Sorry to hear you are not able to get out much. I am really an unhappy camper if I am not able to get out.

But, it goes with the territory for now. I wasn't able to get out today or do anything around the house. The day is not over. Who knows. I have had times when I had about an hour in the late evening where I was able empty the dishwasher or clean the kitchen, etc. One never knows with this.

Do you think we could wrap it up in a package and set it out for someone else to carry off this year?
 

Took three excedrin again this am to see if it helps. I need to be able to get to the store today to get something to eat, clean the kitchen, do the laundry, get the clothes off of the bed, and the things off of the floor.

Sure hope I get a good in home health person in here soon or find a way to do these things myself.

A fellow friend who has lyme sent me a Harry and DAvid Christmas Tree that is all ready decorated including lights.

What a great gift for someone that doesn't have the strength to get out and get a tree and decorate themselves.

It took me two days just to open the box although the box said to open immediately because it had live plants inside. (This person also knows that enjoying my plants has been one of my uppers even though they are mostly cactus I have beena ble to keep alive)

I have to wait until the brain and hands are working together before I put a pair of scissors in my hands to open something.
 

I also figured out what I could do for breakfast. I had a handful of walnuts.

The Excedrin does seem to be kicking in now.

The body and mind are still very low functioning.

Trying to decide what to try next. Need food in the house. Need to clean off kitchen to make room to fix things to eat.

Need clean clothes in the house. Need help.

Need to get out of house. I think this will be the less stressful at this time. I just need to sit there and let the power chair take me somewhere. I'll know better how I am functioning once I give it a try.

Not sure how much of a charge I have on the power chair. I do know it needs charging.

Not sure about sitting upright right now either.

One foot in front of the other time so to speak.

Received call from LLMD's office regarding when my last appointment was again.

This is the 3rd or 4th call regarding this matter from their office. I also received a printed letter re: keeping my status updated and a bill for the telephone consultation.

I sent in the payment and called to make sure the records were updated when I received the letter.

It appears record keeping needs to be improved. I have had two calls from one person and one call from another.

Hopefully this last call will correct the matter.

I think the question is whether I am on active status or not which I am.

His office needs help. Wish I was doing better so I could help.
 

I picked up the things from the floor and cleared off the dining room table. I also went with another friend to see a drive in living nativity. I sat upright in her truck for 4 hours which only seems to happen when I am on the road. If I am sitting still, I can't sit this long usually.

I also did the clay detox that day. I assume I wore myself out and that is why I slept around the clock the next two days.

I had other things going on too but have forgotten what they were.

I know I tried to go to the grocery store. I made it OK in the power chair. But, when it came to lifting my arms and getting the berries and some other things I wanted...I wasn't able to do it and had to cruise on out of there. The brain wasn't working either.

I just took hot bath in epsom salts. I don't think I was in it for long. I usually can only last about 5 or 10 min. I was not able to dry myself off and am laying down as I recover.

I also haven't been able to hear people knock on the door the past few days again so hearing is acting up again.

I was able to gather the trash and put it outside the door this am. I hope to get dressed next and take it to the trash cans.

I also was able to open my Christmas presents finally around 10 pm last night. I wasn't able to open them all at one time. I would become too exhausted after opening one or two and then needed to lay back down and recover before I started in again. I am thankful my daughter sent hers in a gift bag. It was very easy to open.

I did try to get the clothes put away that were on my bed. I was reminded of when this first hit over 3 years ago.

I became just as exhausted and unable to function 20 minutes into putting the clothes away as I did over 3 years ago.

This is very discouraging.

On the other hand, I have stepped up a notch while being off abx and continuing the podi patch and supplement from the same company.

I don't look forward to starting back on the mepron, zithro and arteminicin but plan to next week.

A new in home health care person started today. I am hoping we can get things more organized, cleaned and caught up the next few days before I start on the abx.

I wasn't much help today, but maybe with a good nights sleep I will be able to do more tomorrow.
 

The good news is that I still have them.

And, it is nice to also see more clearly as to why my eyes were given me trouble all those years ago along with the other strange symptoms that I didn't take seriously enough.

I did go to an eye doc, but that didn't help. And I did go to a medical doc for the other symptoms.

Let's see....this was about 1996 or 1997 I am estimating.

I was in an area where the deer walked through my backyard at that time and I spent lots of time blazing trails through the woods. Duh!

 

about your eye's.what you could have is called photophobia.the brightness is hard to take.

i wear bifocal's. 50% dark,for night and 80% dark for daytime..it really does help with headache's and vertigo.

don't buy expensive glasses..try them out first.save you some money.

hope this help's. happy new year,gary

------------------


 

I use them while at the computer and while watching TV and when I am out side. They do seem to be helping once again. Since I only have difficulties seeing far it is working out fine right now.

I was able to be upright 50% of the time yesterday again. This is good.

I am continuing to use excedrin to help, but plan on talking to LLMD about pain meds again. I know the excedrin are not good for you in the long run.

I have been able to organize the walk in pantry/linen closet the past few days. I figure I have about 30 more minutes of work left. It feels great to accomplish this after wanting to for over a year and a half.

I am now able to walk in the walk in pantry/linen closet. HA!

I just hope the people who come to help kept it that way this time.

The next long over do project is the 5 boxes of paper work that is stacked in my bedroom. It will be nice to get the paper work in the files and the clutter out of the bedroom.

AFter this is done, then I will go back on the abx.

It is catch 22. Take the abx in hopes that it will help improve the quality of life, but have the quality of life lowered while on the abx. When the quality of life is all ready very low this is a tough thing to do.

Wouldn't it be great to have a break through in 2005!

I find that I get very impatient with people. I know that it is because I am running so low on resources. I need to talk to the in home health care person and tell her when I tell her I need time out....that means I need time out...don't ask me any more questions and work on something on the list by yourself.

I read on one site that the condition the lady was trying to deal with was like trying to climb a mountain everyday with others pulling you back down.

I am amazed at how when I am trying to accomplish something with the little resources that I have that those who are supposed to be helping don't.

I had no idea there were so many negative thinkers or what I use to call stinkin thinkin going on.

But, then I figured that once I start back on the zithro, mepron, etc....I will not be able to sit upright and write out in long hand as I did before lyme.

And I will need this site to help me keep my sanity again. I just hope I am not driving others insane. :0
 

I learned I was not doing as well as I thought. As when I got there and looked at all the choices and sized, my mind couldn't deal with it. It took all I had to just be on my feet.

I also wanted to look for a certain cat toy. The vision or processing was gone too.

I did accomplish the job, but it was scary. I recall why I had chosen to just write checks and not use cash. I was kind of in a blurr or fog as to what bill I had pulled out of my wallet. I also didn't know if she had given me the right amount back or not...no clue at all. No fun at all.

I couldn't even figure out if it was cheaper to purchase the food at the feed store or get it at the local market. I was pretty much out of it....but I looked fine and faked normal as best I could.

I guess it could be worse. I could not even know that I wasn't all together there. At least I knew I wasn't playing with a full deck.
 

I figured I was able to sit upright for 5 hours today. This is good. Reclined for an hour. Got back up and sat upright for 20 minutes before having to recline again.

But, during those 20 minutes I worked on my new address book. I am in the G's or F's now.

It is looking good for being able to get this done. I am almost functioning normally with the exception of endurance.

I have not been able to fill out my little black book for over 3 years now. It is a good feeling to finally have it organized once again too....well almost.

I received a couple letters from work that need to be taken care of before I start back on meds too. It just may be another week before I am able to start back on meds.

These letters involve going through the 5 boxes of paper work to hopefully find the needed records.

I have been continuing with the excedrin and caffeine to help out.

I also find that even though I am sitting upright, I am not functioning normally. I have to be patient with myself and wait..it seems my processing, hearing, etc. comes and goes. It is difficult to describe. I know I am there talking and listening but it seems at times like I am not functioning on all pistons or spark plugs.

It is good to get out and around people though....if they are easy to be around that is.
 

I am off abx. I am doing the podipatches and taking the supplement that comes with them.

I am trying to remember to do 3 shots of apple cider vinegar and water and sweetner each day.

I am doing the clay detox and epsom salt baths.

I also am wearing the bolle sunglasses when watching TV, using the computer and most of the time. It seems to be helping too.

I am also taking oil of oregon and vitamins.

I am trying to find a way to take the meds and still function well enough to know what is going on around me and be able to do a little myself as I am now.

I left a message with the LLMD again about pain meds.

I continue to be encouraged about being able to do a little around here and use my brain somewhat. I am OK if I do a little, rest and then do a little more.

Body still aches. I continue to have pitch sound in ears. Grocery shopping is still challenging. i still need to do and think slow and take short breaks while I am there to regroup. 20 minutes seems to still be my limit and that is in a power chair.

[This message has been edited by kam (edited 07 January 2005).]
 

I can't recall if I wrote about being able to get the walkin pantry/linen closet organized so I could walk in it.

This is a big accomplishment and something I have wanted to do for almost 2 years now.

I still haven't gotten to the boxes of paper work nor have I contacted work or find the papers I need regarding money issues.

They are saying I owe them money, I recall the money being taken out but receiving a hand written receipt. I have written the supervisor several times as it also is affecting my SSI income. I did not get a response and I have not been able to do much on my end.

Since a week has gone by and I have accomplished very little, I am trying to decide whether to just go back on the abx and to try and see what I can do to accomplish this long over do project.

The manager of the apartments I am residing in also needs paper work which is in those boxes. Hopefully. Or not. I just haven't been able to take care of records.

It appears I am going to need to ask for help in this matter or another year will go by without this being taken care of.

I hate it that I am not able to do these things myself.

I had a good nights rest last night. Woke up feeling like that fully loaded semi truck had run me over again. Took 2 excedrin, stayed down and then was able to do the clay detox, take a shower and get back in my robe.

It wore me out. Even with the excedrin and the cup of coffee, I slept for an hour.

I tried to send a thank you card to a friend who took me out on New Years Eve for an early dinner.

I had great difficulty addressing the card and writing a little note. But, it finally got done.

If life is going to be this low functioning off the meds, I suppose it will not make much difference on the meds.

I will start up on Monday.

As I am typing this, I realise that I need to find a way to recharge and rest as I climb this mountain everyday. I need to focus on the little pleasures in life and hang on to them.

Thinking of what I am not able to do is not helpful and only brings me down. Ignoring it does not seem to help either. It is a in your face kind of condition. Guess I just need to keep it at an arms length.
 

Stomach is still bloating and hurting. Not sure why. It usually doesn't last this long.

It is almost noon. I still have not gotten dressed yet. I also was not able to fix myself breakfast. Glad in home health care person was here to do that.

Was able to address two envelopes that I was not able to address last night. So, I was able to work on workmen's comp paper work a little.

Very frustrating to be so low functioning.
 

I do know that I have been trying to get records straightened out slowly but surely.

I have had others file and keep records for me while on the abx because I was not able to.

I found 4 payroll stubs under untilities tonight. I don't know where the others are.

I found my college transcripts under applications.

I found my chart on what to order for eye glasses in case I loose mine under receipts.

And this is just the tip of the ice berg. It looks like I will need to go through each file to find the receipts I need for work and the apartment manager. Mostly, it looks like they are not there.

Sad state of affairs at this point and most likely cost me money.

I am realizing that not everyone knows how to keep records or file even those who have worked for social services, H&R Block, have been a secretary for a hospital and have their own tax business. I am reminded not to assume that someone can do something just because they say they can or have had past office experience.

I hope to finish up with outstanding business this week and start on meds next.

I am not sure what to do about the filing while I am on the abx. At this point, I think putting paper work in a box is not such a bad idea. At least until I can get to it. At least, it will be there when I need it.

Hopefully, I will not be going through what I went through the last 2 years while on abx and will be able to take care of those records that are the most important.

I have only found two co pay receipt for the primary doc and one receipt from the LLMD for the past years.

The good news is that it is good to be doing well enough to do these things. I do a little, rest and then try to do a little more. I can do about 15 or 20 minutes work at one time before needing to have down time again and recover. Eyes are bothering me, but they seem to recover after a good nights sleep. The whole body still wears out much too quickly.

Took a shower and had that sick feeling as if I was going to through up and total exhaustion. The road remains up hill.

I use to enter everythign in quicken and know exactly what was spent on what and how much.

Don't have the skills to set up the program now.

The good news is we have a balance to start the new year off with and she is going to try and keep the checkbook up for me this year or until I can take care of it myself.

We got it figured out just in time. I had $1.00 left in the account. AT least I was not in the red yet.
 

I then went to church and alternated between standing, sitting and lying.

I laid down for an hour and then another friend stopped by and I went with them to get something to eat. I was feeling pretty good about being able to do some things.

I locked myself out of my house and stayed the night at my friends.

Monday, I also did well for about 3 hours off and on. I tried to help my friend out with household chores while she was at work. I did those things that that I have learned the past 3 years that work for me when I am a little bit functioning. I put the dishes in the dishwasher, put the towels in the washing machine and took out the trash.

I also was able to take a shower and get dressed. I needed to rest in between all of the chores but at least I was able to do them if I kept it within a certain time limit.

I was exhausted the rest of the day and not able to do anything more.

Today, I woke up with the head stuff. Took 2 excedrin and have been pretty out of it. Waves of nausea come and go, heat waves come and go. I hope that this afternoon is better. It is one of those mornings that I feel I would rather not live any more if this is how things are going to be. But, I know from past experiences that things do improve and I need to wait it out.

I am frustrated that it has been so long and I still haven't been able to wrap up the paper work that needs to be done so I can get back on the meds. I also have not heard from my LLMD regarding an appointment time for February.

The cat peed on the couch while I was locked out. I need to find someway to get rid of that smell even if it means tossing the couch.

I also need a new in home health care person as this one is making things worse. I had a few really low functioning days and learned that she is one of those people who make things worse on those days instead of better. I also feel that all my energy goes towards helping her do her job while she is here. I prefer someone who comes in and does their work independently allowing me to have more strength for other things.

I went to the hardware store last week to see about ordering some wood polish that I like. I even brought the old bottle with me.

It took all I had just to get their in my power chair. I ended up purchasing some wood polish that was on sale and forgetting why I was there. A couple of days later, I recalled why I was there and that I had used the wood polish that was on sale before and found it not helpful.

The good news was that I had made it all the way to the hardware store in my power chair. I am not always able to do this although it is not that far away.

I also went to another store to pick up something and forget why I was there. The short term memory is still a problem.

The person I rehired for in home health care was one of the people that had worked for me before who I knew was not going to work out. The short term memory forgot about this until she started again after being laid off from the full time job she had and wanting this job back.

I think I will remember this time and not make the mistake again.
 

ON the positive side, I woke up with the fight back in me for the most part until today.

I tried to be normal Sunday and over ride the pain. I tried to be normal on Monday too...but only lasted about 3 hours with resting in between tasks.

My guess is today is such a rough day because of over doing it the past two days.

 

Had a rough day yesterday. Today looks better. At least I was able to fix some breakfast.

I had the feeling I was going to through up with any movement, the heat waves coming and going, and basically being out of it.

I tried taking a couple of excedrin but it didn't seem to help yesterday.

I also noticed the eye thing is going on where I think something is running aross the floor or moving in the air and it is really something going on with an eye. There is nothing there.

Not sure what to try and tackle today. Not sure what I will have the strength for. I guess I need to make a list, rest, prioritize, rest and then try to get done what is at the top of the list.

The mind does not want to stay focused either. I was able to make a frequently called phone list yesterday to put on my frig. This is something I have been wanting to get done for quite some time now. This is good.

I also was able to do the clay detox yesterday evening and take a shower. I got dressed to go to the Bible Study but no one called or came to pick me up.

I wasn't sure whether it was a good idea to try and make it last night or not. I figured I would try and if I couldn't handle it I would ask the person to take me home.

I so miss not having my own wheels. The Bible Study is only a few blocks away.

It is tough enough to rely on other people and loose my independence. But, then when they don't follow through it is even more frustrating.

By the time I got to the door this am to let in the in home health care person she was gone. I know I move slow, but I don't think it took me that long that she couldn't wait until I got to the door.

Yesterday, I had change light bulb on the list. It appears she changed the good light bulb as the burned out one is still burned out.

I recall her asking me which light bulb to change and where the light bulbs were. I was pretty out of it yesterday even though I was in the same room with her.

When I got up this am, I noticed she had checked off that she had changed the light bulb but it was not changed.

I also recall telling her the one over her head when she asked. There are two light bulbs in the kitchen about a foot apart.

Do you think she changed the one that was fine and missed the one that was burned out??

It is dark in the kitchen and the lights need to be on during the day too.

Lyme Brain? Something in the air or water around here??

I did hear from my lyme doc's office and returned the call regarding appointment time for next month and in home health care form to fill out by the end of this month and pain meds. I left a message.

I forgot to ask if he had contacted the valley fever center in ARizona to see if there is possibly a connection between the other teacher and myself and if so what needs to be done.

There is a connect for sure but finding help with getting our health back is the tricky part.

Sure hope these meds help. I have had the dizziness and flu like symptoms along with not being able to move without feeling like I am going to throw up again before I started back on the meds. Also the heat waves.

So, I figured I might as well get back on them. I haven't heard back from LLMD's office regarding time for appointment for Feb, in home health care renewal form and pain meds. Hopefully, I will hear something Monday. The answering machine is full again in his office.

I think I need to get well so I can help out around there for a while.

I was able to get in the power chair and cruise on over to the park about 3 blocks away. It was good to be out but I felt sick the whole time and had difficulty holding my body in a sitting position.

The pressure in my head and left eye and ears is great. I am not sure whether to try a couple more excedrin or not. I am not sure if they are helping or making things worse.

A few minutes again the whole body heated up and felt as if I was going through up again.

I have had to stay down all day with the exception of the cruise to the park for a very short time.

NO aches or pains in the body. It is just the head stuff that is keeping me debilitated today for lack of a better word.

I tried to call LLMD but his message machine is still full. I know I can call his cell phone if I really need to but only wish to do this when I feel it is important enough.
 

snowbound here in pa..temp's might go above freezing today.

,gary

------------------


 

But, I do recall the pain in my eyes and the eyes watering and taking excedrin to try and help.

And just trying to get through it. I just took two more excedrin this AM so it has taken the edge off some for now.

Don't know if I will be able to do anything yet today. It has been almost a week now.

Have the high pitch sound/pressure in ears too. I took the mepron right before I went to bed hoping that it would not bother me to have a cloggy head while I slept, but wasn't able to sleep.

It seems I feel sick off the meds and on them. CAtch 22.

I am a happy camper if I can do a little, rest and then do a little more. I have not been a happy camper lately.

I guess I just need to wait this out and hope I have a good day soon.
 

I feel as if I am back on the playing field again.

I was taking the wrong dosage on the zithromax and need to increase it.

I have a date and time for an appointment this month.

He will be sending me the in home health care form. I just need to find a caring and adequate in home health care person now. Hopefully, I will be able to get that chicken in the oven I purchased earlier this week cooked. It is so frustrating not to be able to do something that simple.

He mentioned the NP in Visalia again and I finally made an appointment to see her too.

I will see her next week. I all ready have a ride too. He mentioned that she will be able to help me with the pain meds. I have noticed how the pain meds have improved the quality of life for others. After 3 years of trying not to take them, I am hopeful they will help. I have noticed that excedrin helps to take the edge off at times, but that I need to take more than is safe each day to help so I don't.

Couldn't sleep last night because of the pain in my legs from standing too long at the mail boxes talking to someone that hadn't been able to get out since December due to health reasons.

I thought going 10 days was rough. I can't imagine over a month although I think I have had times in the past when I have over done it that I was down a long time.

I contacted the two other teachers to see if they would go with me. One is considering it. The other is coming up with excuses again, but continues to complain about not getting help. So, glad I have learned from past experiences with her and limit my contact.

Mostly, I am glad I am back on the abx and that I did see that they are helping to keep those symptoms at bay.

Hopefully, the war will be won in the long run although at times I wonder about the individual battles that take place in the body.

I know there was more that was discussed, but my mind needs a break.

What just popped in my mind is....

I also received an email about a person who died of lyme disease in Santa Cruz. I always wonder what happened and what could have been done differently.

The only conclusion I have come up with so far is that some were dx with CFS/fibro etc. for too many years before they received the treatment and dx for lyme disease.

One of the yahoo groups is going to start keeping track of those who die from lyme.

It always surprises me that we are at such pioneering stages with this disease. I think this is a great idea, but am surprised it hasn't been done before.

But, who would keep track? Where? It would be sad to have it here on lymenet. We come here for hope and encouragement.

But, this site also comes to mind as a good place to keep this information. Flash discussions is not a good place though.

I would think one of the side topics in the upper left hand corner would be better.

I would also like to see success stories in this same area.

I wonder if wildernet would consider this. Time and money is probably one of the factors there also.

The LDA web page would also be a possibility or ILAD.

It is overwhelming what needs to be done to help organize the lyme community at this time.

It is also great to see all that is being done in the two years since I have started on this journey.

That would be another good sub category.

I love it when my mind starts to have ideas again. I am looking forward to when my body and mind can start working together to accomplish some of these ideas.

I wonder if I will be like so many others who put lyme behind them and don't wish to remember that time in their lives or help others out.

I applaud those who have gone through it and continue to help others out.

 

It was pretty tricky though. I started out OK and able to multi task. I had the chicken in the oven for 30 minutes, laid down and then got up and put the fresh asparagus and sweet potatoes on. That went well so I pushed the envelope and made biscuits from scratch. That went well but I was beginning to fade fast. I had 10 min so I laid down to recover before I dished everything up.

That didn't go well. I had to lay back down again before I had the strength to dish things up.

I also was too tired to eat or to weak or exhausted. I ate a little rested a while and then finished the food.

Rested again before trying to put things away. That was when it got really tricky. It is so strange. It is as if my batteries are barely running the system. I look at the food...basically just talk myself through each step telling myself I can do this and don't cry it will be all right. Each step is extremely difficult. I got the food put away but the sink is full of dirty dishes that will need to wait until tomorrow.

I also was able to plant two small plants in the garden bed outside earlier today. I compared it to planting a large tree instead of digging a small hole with a spade because it was so difficult. That was done by digging a hole, resting, putting the plant in, resting, watering the plant and covering it up, resting, then planting the other one several hours later. Now, I need to find a way to protect the plants from the gardners. They don't seem to be able to tell a plant from a weed and enjoy weed whacking anything in site. How do say weed whack NO in Spanish?

The strange thing is that I am a happy camper on these days. It feels good to be functioning well enough to accomplish something even if it is a struggle and takes small steps.

I also was able to get on the phone today and contact student loans. I had tried earlier and didn't have want it took to find the number after I found my log book to check when I had called them last.

I ended up asking for the supervisor. She said she took care of things. I certainly hope so. I am good for another year or less which ever comes first.

They are good for another $3,000 in interest if I understood her right. This was another project that I have been trying to accomplish since the first of the year. So heads up.

Try going directly to the supervisor instead of talking to the person on the phone who either doesn't have listening skills, doesn't understand English or tells you that they are putting you on hold so they can process the necessary paper work to send you, tells you they are sending the necessary forms after you on on hold for an unreasable amount of time and you never receive them.

Back to dinner. I didn't try to leave the house today, get my mail or go for a cruise in my power chair. I assume this is why I was able to cook dinner. I stayed in a reclining position most of the day.

At the end of the day, I would say that some headway was finally made and things are looking more promising.

dinner sounded good,need a glass of wine with it..lol.. , gary

------------------


 

Great idea on flagging the plants. I knew I kept those bird perches for something.

We have several wineries in my old town. I visited them before I got sick and purchased one of the best bottles of wine I have ever had. I brought it to a Valentines get together and left it with the host. She drank it all. HA! I had always planned on going back and getting more. I guess that will be one of those milestones once I am well and have my own vehicle again...driving to the winery and picking up that great bottle of wine. The trick is going to be to recall the name of the wine. It was a special unique to their winery that year.
 

It was at a gaming casino. They had a lot of handicap parking places but they were all taken. I guess this is where the handicap are hanging out these days.

I had a little bit of difficulty with the movement and walking to the dining hall but after sitting for a while I was OK.

I am still feeling pretty good at being able to do something like this. It is the first time in 3 years. I recall trying to go to my daughters wedding dinner reception and being pretty out of it and not being able to hold myself upright. So, this was a big improvement.

I don't know if it is the meds are if I am in one of the good cycles but I also was able to do the laundry today and plant another small plant and take out the trash. None of the tasks were as easy to do as when I was well, but the fact that I was able to do them felt good. There have been times in the past when just sorting the laundry wasn't possible.

I certainly hope it is the meds and things are beginning to pick up.
 

I hit a pole on the way back. Just when I thought I was getting well enough to get behind the wheel of a car. Guess not.

But, I was pushing the envelope today. I have learned I need to keep it under an hour and I think I was out for an hour and a half.

I did mop the kitchen floor and take out the trash. This is good.

And I did empty the dishwasher of the couple of plates and bowls and silverware. I needed the clean silverware.

I am back down again. I hope to be able to clean the pots and pans next so I can once again have counter space in the kitchen. It is also time to make something to eat too.

Lots of other things that I need to do but I will do what I can when I can.
 

My supervisor at work who came down sick the same time I did and who was dx with fibro brought on by stress at work met me there.

She was great. She told how the opportunity for ticks was great at work and why.

I was not aware of these things myself.

The other amazing thing is that the NP works for a pulmonologist. I have an appointment with him Thursday. The NP said that he will do the extended valley fever test with the IGG's.

I have been trying to get a doctor to do this for quite some time. I had basically forgotten about it. I will know now that I have done all I can regarding ruling out or confirming valley fever.

She also took one look at my back and gave a name to what I have wonder what it was for a long time. I noticed that it comes and goes. It also shows up on my neck and sides.

I don't recall what the name was but it is basically a fungus.

Molds were mentioned in the classroom too and mycoplasma's.

I have a ride into the docs Thursday. Now, I just need to find out how much it is going to cost to see this pulmonologist and figure out how I am going to pay for it.

It is worth doing to know that I have done all I can regarding workmens' comp.

It is one of those WOW moments. I had several names of doctor's to contact regarding workmens' comp as far as CFS/fibro dx. I would need to pay all of them out of pocket. So, I needed to choose wisely.

I went to the NP because my LLMD suggested it when I told him I wished the other teachers would go to see him but they were sticking with docs provided by thier insurance.

I don't know if my supervisor who went with me will go to see the NP or not for her own health dx of fibromalgia. Perhaps she will after my health returns from the treatment.

But, what are the odds that the NP works under a pulmonologist who knows that extended testing is needed for valley fever and is willing to do it.

Workmen's comp could still be approved. This would open the doors to medical retirement and the funds to treating my health issues and getting back in the classroom. WOW.

If not, at least I know that I have done what I could.

Pain meds were discussed but she said that in the long run it is not good. I have heard that from another lyme patient who is trying to get off of the pain meds right now. She is having a rough time of it.

So, I had 4 excedrin today and lots of coffee. I didn't sleep last night until after 5 am. I most likely will not sleep tonight because of taking the excedrin and coffee to help me get through today. I left at 10:30 am and got back home at 6:30 pm. I was upright for the most part and hurting with the exception of travel time. I reclined the seat when traveling.

I wonder if I did an epsom salt bath if it would help tonight. I know if I stay down for a long while the pain will go away.

A lot of things were discussed at the appointment. Some of it was written down.

I wasn't able to take in everything that was discussed and wished once again that I had recorded the meeting.

I know I need to see about having lab work done once a month. I will try the local labs again. But, last time I tried they would not accept out of town doctor's request.

You've mentioned your attempts at employment in the past. Perhaps, you've already found your occupation ?

My sister had a very difficult surgery some time ago. Due to the fact that she was unknowingly allergic to heparin, she will be permanently disabled, and lives in constant pain. Her doctor has prescribed oxycontin which she takes on a daily basis, for the remainder of her life. Her doctor stated that he would rather have her on oxycontin than tylenol, or aspirin, as he felt these are much more dangerous. If taken as prescribed, and not abused, most people manage fairly well.
Kam, I believe there is light at the end of the tunnel for you. Needlessly suffering in the interim, doesn't have to necessarily belong in the equation.
You'll be in our families prayers. If you ever need anything, or if I can help in any way, please check my profile for my e-mail. My family and I will only be a few keystrokes away. God Bless.
 

I pictured cartoons included with the journey to help express the craziest of all of this.

I don't really think I am alone in this. Unfortunately, I think I am more of the norm.

And it is not just lyme disease. I think it would be good to bring these medical obstacles to light.

I had no idea what people go through to get help in the medical field until I experienced it first hand.

Nor, did I have any idea how people treat others who look fine on the outside but are struggling on the inside until I came down with this.

My supervisor told me a little of what she went through when she tried to go back to work after being out sick for 9 months.

She has a lot of the same symptoms I have and has been dx with fibromagia and diabetes.

On the other hand, when I tried to return to work, they were great. They went out of their way to make sure I had the company golf cart to get to my classroom, stopped in to check on me and even happened to be in the classroom when my body stopped cooperating and took over the class for me.

They also had some one drive me home and brought my car to me later.

I am not sure who was responsible for all of this. I think this person was my supervisor at the time so perhaps it was her. She knew first hand. I didn't know she knew at the time. I was just happy to be there and to be able to sit upright.

Even while I was at the appointment with the NP, I was faking it for the most part. I recall her asking me a question about cognitive skills and it brought to light that I had gone over my limit quite some time before in regards to retaining and processing what she was saying and was just sitting there faking it.

I was able to let her know at that point. There is no way that someone would know this unless I communicated it.

A cartoon with the bars over our heads as they have with the cell telephones would fit in here.

The brain hasn't recharged enough yet to go back and look over the notes that the supervisor wrote down and the NP wrote down for me. I tried and the brain wasn't ready yet.

I do recall getting copies of the environmental study that was done in the building was brought up at the appointment when so many of us came down sick.

I also recall the supervisor saying that getting copies of the study was mission impossible.

All I know at this point is I need some down time and I need to get to the pulmonologist tomorrow.

It would also be good if I could get copies of past records and get the medical records in order.

But, I think just getting copies at this point would be a milestone. I have been promising my LLMD copies for over two years now.

I was able to make copies of the mycoplasma report and my monthly log for the doc yesterday.

It happened because I had help. I put the copy down on the machine and the lady who drove me got the change for the copier and pushed the button to copy.

Between the two of us we were able to get the job done. I have learned if you break things down in steps and someone else helps it works. Just standing at the copier at this point was taking up most of my futzpa.

I have given my medical records to doctor's offices in the past to copy and have come up short handed.

This doctor's office was able to replace the Igenex Western Blot test results for me by having Igenex fax them over.

I had lost those at one of the offices I had visited in the past along with other records.

So< I do not trust doctor's offices to copy things for me unless it is only a few pieces of paper.

I am running amuck on the keyboard here. I am trying to fake it again. Haven't had a good nights sleep in two nights now and haven't taken any excedrin today in hopes that I will be able to sleep tonight.

I got home and 3 of us unloaded some of the things I picked up at Costco, but I used the power chair so I am not so sure "normal" was working at that point. I do recall breathing heavy as if I was climbing a mountian as I tried to take the bags from the chair to the few steps inside the apartment.

I was able to sit upright and feel almost normal as I attended a Bible Study. I didn't try reading though so not sure really how well I was fuctioning. I just liked the idea that I was able to sit at the kitchen table and could see who was sitting there also and process what was being said for the most part.

AFter I returned home, I turned on the TV to hear the Apprentice's theme song of Money, Money, Money. I started dancing in the kitchen to it. My body and mind were behaving normally. It was a lot of fun. It was a short dance, but it felt good to move the body normally.

The negative is that the two hour drive to see the doc was questionable. I was told he was a pulmonologist. When I got there I found out he was a ID.

But, he did say that the medical field didn't accept CFS/Fibro/lyme before but there is enough research now to know other wise.

I could have been a wise guy but I didn't say what I was thinking.

The fee was $65 for a few short minutes and I am not so sure why I was even there and what it was all about.

I really miss my mind. I had borrowed the money to see this person and the one who had recommended him.

I kind of feel that it was not a good idea at this point. Time will tell.

The good news was that the lady who took me seems to think that her NP is willing to see me.

She accepts my insurance also supposedly. But, she has shingles right now and doesn't want to see me until she is over them.

I am still looking for a good primary doc who will work with my lyme doc and have the same goal I have...help me regain my health and do what it takes to do this.

It has been 3 years of searching. Hopefully, this NP will work out. The problem is that she is a couple of hours away too.

At least I am at the point where I think I trust her enough to at least give her a try.

In December when it was suggested I see her, I did not have the right attitude to see anyon in the medical field.

It took me a month of being off abx to re assure me that I couldn't just forget docs all together and just magically get well.

It was good to do something normal like be at Costco. But, I sure didn't like the way my mind and body behaved. I used the electric cart. And had to take lots of time outs. I would be able to over ride things and shop a little and then couldn't and almost be in tears because it was so difficult just to purchase a few things.

I would just sit there until what ever was going on would go away and then try again. It seemed to come in waves. Just sitting up was very uncomfortable at that time. Using the brain was impossible at times.

I gave up and went to the checkout and waited until the person who took me showed up.

The person at the checkout was very good at helping us get the groceries to the car and getting the electric cart back.

My head is still being weird so far today. I hope it clears up around 3 again so I can experience a little of what it is like to be normal.

I tried taking 2 excedrin and coffee but it hasn't seemed to help.

I also didn't have the pressure in the head and the ringing in the ears after 3 yesterday. I have it right now.

The person who was supposed to be here at 1:00 to meet me regarding helping with clerical type of things did not show or call.

This is this area for you. I hope I am functioning well enough I can fix me something to eat today and do some of the things myself. I just need to prioritize which things are the most important.
 

I also was able to get out in the power chair for about an hour today and run a couple of easy errands.

I finally got the thank you's off that I have been wanting to mail for about 10 days now. I did them in steps and didn't write anything on the inside except my name. I figured it was good just to get them in the mail at this point. I addressed them half way the day before and finished them up today. Still doing things in pieces but at least I am able to do this. This is good.
 

Lots of rain out there today. I need to go over my notes, but I recall I need to figure out what it is going to cost for more zithromax and IV G stuff.

I also need to check with pharmacy because I should have 3 months of mepron approved.

I have taken 2 bottles, but doc said I should have more available through drug program.

I was feeling pretty spiffy when I arrived at my friends house. I tried to do some jumping jacks.

I found out I could move my legs and I could move my arms. But, I could not move my arms and legs at the same time. Interesting.

But the ability to move them seperately was/is an improvement with the connection between the limbs and brain.

Well, I have bee sitting upright trying to pretend I am normal long enough. The brain fog is starting to set in along with the pain in the body. It was nice to sit upright for a while. The TV is even on while I am typing this...this is unusual...typing and having background noise usually is not something I can do. When I read this back, I will know if I was really able to do it. :HA

We left the house at 1:00 and it is now 7:00 and I have been upright all this time. Yahoo!
 

I was able to spend the day with my 3 yr old grandson.

I was able to read to him and we put puzzles together.

It was good that he took a 4 hour nap in the afternoon because we both needed it.

I ran out of juice in the evening and his dad took over and I laid on the couch with his Mom and watched a video. (The Notebook)

But, it is the first time since he has been born that I have been functioning well enough I could interact with him.

I also was able to pick him up and kiss him good bye and give him a hug at the train station.

WOW. When he was born, my arms were too weak to hold him. So, this is a big improvement.
 

OH HAPPY DAY.

I THOUGHT THE TRAINING WAS IN FEBRUARY AND I MISSED IT. BUT IT IS IN MARCH.

I ALSO WAS APPROVED FOR THE GRANT, BUT I NEED TO COME UP WITH THE HOTEL, FOOD, TRANSPORTATION, DOG SUPPLY FUNDS FIRST AND THEY WILL REIMBURSE ME AFTER I HAND IN RECEIPTS.

I HAVE LOTS OF OBSTACLES TO OVERCOME AT THIS POINT...LIKE WHERE I AM GOING TO STAY, HOW I AM GOING TO GET THERE, HOW I AM GOING TO GET AROUND ONCE I AM THERE, GETTING THE POWER CHAIR IN AND OUT OF THE VEHICLE, HOW I AM GOING TO COME UP WITH THE FUNDS, ETC. BUT MY HOPE IS THAT THESE THINGS WILL ALL WORK OUT.

I ALSO HAVE CONCERNS ABOUT MY HEALTH HOLDING OUT FOR TWO WEEKS BUT MY HOPE IS THAT IT WILL. EVEN IF I HAVE A DAY OR TWO WHEN MY BODY SHUTS DOWN AND I AM NOT ABLE TO DO ANYTHING, I THINK IT WILL BE OK.

I HAVE AN AUNT AND UNCLE WHO LIVE IN THE AREA SO I WILL BE CONTACTING THEM. I HEAR THEY HAVE A TRAILER THEY RENT OUT.

I HAVEN'T TALKED TO THIS AUNT AND UNCLE IN YEARS BUT I THINK IT IS PRETTY COOL THAT THEY ARE NOW LIVING IN THAT AREA.

THERE ARE NO GUARANTEE'S I WILL COME HOME WITH A SERVICE DOG....BUT I CERTAINLY HOPE SO.

I SAW THIS PROGRAM ON TV. SOME OF THE DOGS START THEIR TRAINING AT PRISONS AND ARE TRAINED BY THE INMATES.

I WAS TEACHING AT A PRISON WHEN I CAME DOWN SICK. SO, I THOUGHT THIS WOULD BE GREAT. MY PLAN AT THE TIME WAS TO GET WELL ENOUGH TO RETURN TO TEACHING AND TAKE THE DOG WITH ME.

SINCE THE DOG WAS FAMILAR WITH THE PRISON ENVIRONMENT, I WOULD HAVE A GOOD ARGUMENT FOR ALLOWING THE DOG ON SITE WITH ME.

THIS FLASHED IN MY MIND WHEN I READ THE LETTER. THIS HAS TAKEN SO LONG TO IMPROVE, I DON'T KNOW NOW IF I WILL BE ABLE TO RETURN.

BUT, IT IS STILL A POSSIBILITY EVEN AFTER 3 YEARS. I HAVE UNTIL THE END OF THIS YEAR TO IMPROVE ENOUGH TO RETURN TO WORK BEFORE THAT DOOR IS CLOSED.

THERE IS STILL HOPE. HOPE IS GOOD. HAVING A SERVICE DOG WILL ALLOW ME MORE INDEPENDENCE.

THIS IS GOOD AND SOMETHING I AM LOOKING FORWARD TOO.

DON'T KNOW WHY THIS ALL BRINGS TEARS TO MY EYES BUT IT DOES.
 

I also made some contacts regarding lodging while in training. I hope to be able to get to the post office tomorrow to mail the letter.

Tomorrow is my birthday. Not sure how I will be spending it yet.
 

Sitting upright for longer periods, the dancing, and being able to interact with your grandchild. ALL POSITIVES ! Keep going, you're on the right track !
 

Need to log in some more just to help me gather my thoughts.

I woke with that strange feeling in my head but 2 excedrin helped.

I am not one to dwell on symptoms but need to be more specific so doc can help.

I was able to cruise on over to church in my power chair. I became very sad when everyone was in the kitchen and I was reminded of how unproductive I am right now.

It didn't last though. Don't see any reason to dwell on what I can't do.

I was able to attend another class for a very short time.

When I arrived in the main part of church, the movement, the crowds, the noise was too much. I went to the back and laid down.

That worked. I was able to process what was being said although I couldn't tell you what it was right now.

Cruised on home. Ran into some friends near a coffee shop on the way home and had soup with them. I was very weak and low funtioning but like to be around these guys so I gave it a try.

Rested. Put two loads of laundry in with the power chairs help. Sure miss not having my own washer and dryer and my own home. Used the laundry mat on site.

Able to walk to the laundry room to put clothes from washer to dryer.

Used power chair to bring clothes back home. It seems I can carry myself for a short distance, but carrying a basket of laundry with me is too much right now.

A friend stopped over. She will take me to the training site. She has a truck so this is good. She suggested I rent or purchase a used ramp to load and unload the power chair. I need to but have been putting it off due to funds. I hope it works out. I contacted a web site that sales used ramps.

I also was able to plant one more plant in the garden bed out front. I wanted to plant another one but was too exhausted. I will try again tomorrow.

Most likely will be a couch potato for the rest of the night..body and brain have had it.

It was good I was able to do what I did today.

Also left message on pharmacy message machine regarding mepron and biaxin.

I will be out of meds on Wednesday.

So, I called LLMD to see if he wants to just call in a prescription for Biaxin to the pharmacy.

I hope he is able to get to this as I will be out of meds on Wednesday.

Able to plant one more plant outside today.

Called one of the other teachers who came down sick when I did 3 years ago. He is having a relapse and not getting help from docs.

I gave him my LLMD's name. Don't know if he will contact him.

He too is concerned about how he is going to survive without an income. He has a PHd and has overcome a lot of obstacles in his life. I am sure he will overcome this too. He is from a 3rd World Country and put himself through college.

I would like to read his book someday too.

His goal is to get his health back.

I woke up at 3 am last night in a sweat. It is almost midnight now and I am sweeting and too hot to sleep. Not sure if I took both teaspoons of mepron today or the day before. This may be why the sweats are back. I will make sure I take two teaspoons tomorrow.

Faxed the doctor's note to the attorney re: workmen's comp.

Wanted to do more today but had brain drain.

Did get out in the power chair and cruised on over to the post office. But, it was a rough trip...I was pushing it and thought I was going to have to push the chair there for a while. It was acting as if it had fouled plugs...only problem is that it runs on batteries. It stopped on me several times.

I think I have been down since 3:00 pm today. The old lay on the couch and watch TV and then lay on the bed and play computer games and visa versa routine. It helps take my mind off the lyme.

I also had difficulty moving the legs today and body so it was time to let them recharge whether I wanted to or not.

Hopefully, I will be able to do a little more tomorrow.

[This message has been edited by kam (edited 01 March 2005).]
 

Took an epsom salt bath and that shut me down again for about an hour.

Got dressed in parts. Then got out of the house for two and a half hours. Very unusual to be out that long.

Tried on a pair of jeans which totally exhausted me. Decided to wear them instead of putting my old pair on. Put my keys in the pocket.

Realized the jeans were not going to work and took them back off. Forgot to get my keys out of the pocket. Will go back tomorrow to see if I can figure out which pair of jeans on the rack have my keys.

Also stopped a place in town to see about a ramp to load and unload the power chair.

Was told that since I would be trying to load it in a pick up truck or SUV that a ramp would not work. The incline is too steep. Made sense.

Back to finding a couple of guys to help load it.

Other option is to rent a U Haul trailer. I will look into this also. He also said that Costco or some other store has trailers for sale for $300 right now. Not in the budget, but an idea.

I did cruise on out into the street at the most busy 4 corners in town without checking to see if it was safe on the way home.

I was crossing on a red light. But, the lady who pointed it out to me was friendly...she just wasn't about to stop.

I hate it when my mind does that. I dislike it that I need to keep it under an hour when I am out.

I am hoping the service dog will help me somehow. If only, to make sure that I don't put him or her in harms way.

I also stopped by the grocery store so I have food for a couple of days.

And I found someone to take me to the workmen's comp meeting on Monday. I have not felt safe with her in the past. I hope all goes well this time.

I will come prepared with no need to use the bathroom and to bring food and water with me.

My favorite person to travel with is in Oregon this week.
 

I had the bloating of the stomach while doing this as if I was at least 7 months pregnant. Not sure why this happens.

I still need to get someone in here to help out as I can't keep up, but it I am looking forward to when I am able to do these things myself consistantly again or enough to keep up and not totally exhaust and drain myself.
 

Been reading your post here and there. Tough times. I get the bloated stomach before alot. I was treated for h.pylori twice and this helped but lyme involved too. Mine would get hard like pregnant too and nothing wanted to work.

Hope you see more imporovement soon.

 

Called pharmacy and medication is ready. Need to find someone to drive me the hour out of town to pick up the meds.

Both these obstacles feel great to have overcome. Not big obstacles when you are well, but road blocks when you are so limited.

Still waiting to hear about lodging for service dog.

Still waiting for forms for dial a ride. Need to call again. Not clear as to whether or not I need to fill out forms to be eligible or if I just need to be picked up and dropped off in certain towns. The town I was planning on staying in was not one of the towns although it is only 10 min. away.

Really dislike asking again, but need to swallow my pride and do it.

It will determine where I can stay in the area.

Cruised over to local coffee shop this am. Nice to be out. I was not normal, but doing well enough to fake it. Knew it was time for me to head home when I started running into things with my power chair.
 

I will be so glad when I can get in the car and drive myself some where.

I finally found someone to drive me to the drug store out of town to pick up the mepron and biaxin. The biaxin is for 7 days only.

I need to call the LLMD and let him know this. I assume he wanted much more.

I was gone from around 3:30 until 8:30. I had a rough time of it until then and continued to have a rough time of it until I sat down to eat. I started feeling human after that. So, the last hour and a half I was OK. An hour of that was in the car traveling.

I tried to go into a store and had to have the lady who was with me walk me out. The legs and mind were not working very well.

I seemed to recover after reclining in the passengers seat for about 40 minutes while she continued to shop.

It was like this the first 3 hours or so of the outing. It seemed to come in waves.

Glad it ended up well and that I got the meds.

When I got home, I had a call from my Aunt and Uncle about housing while I am training for the service dog.

I had written them some time ago but they just received the letter today....talk about snail mail.

I tried to call back but got an answer machine. I also had trouble talking at that time but did the best I could. The brain and processing and talking were cutting in and out.

I called Dial A Ride again today and again was told that they could not pick me up in the town 10 minutes away from the training site and that I needed to stay in the same town as the training site. So, I am not sure how all of this is going to work as my Aunt and Uncle live 10 minutes away in the next town.

I also need to call Dial A Ride again because the instructions that I received from CST says that I need A.D.A. certification to use Dial A Ride. I don't think I told the person that I had a power chair when I talked to them so I need to clear this up.

They did say I did not need A.D.A. certification so I hope that is true.

I dislike having to call so much in order to process things.

I also received a call from the attorney about the hearing Monday morning. I thought that was very poor of them to call me late on Friday to remind me of it.

But, I did learn that I would be able to talk to the judge. I pray that God gives me the wisdom regarding what to say.

Perhaps, your opening statement to the judge should be that you experience mental lapses with this disease, so he understands that upfront.

That way if you have some difficulty with stream of consciousness on Monday, he'll understand. Good luck on Monday !

We're all pulling for you !
 

Talk about mental lapses. I am now wondering why I pulled this post up. HA!

OH Yes. It looks like the transportation to the training site for the service dog, hotel accommodations, food, $150 for field trips and other expenses, help with filling out forms, ride to and from the training site, vet and groomers name and who will take me to the vets when needed, and the ride home has all come together.

Now, I just need to start checking off those things on the to do list. It amazes me how much down time I need and how long it takes to get things done.

I woke feeling like that fully loaded semi truck had been by in the middle of the night again. The head stuff was not good either.

I don't know if it is because of using the brain when it didn't want to be used the past two days or the new meds I started yesterday.

Either way, I am doing better now. I slept in my sweats last night so I was able to just get up and even walk to the local coffee shop. The noise and lights in the coffee shop was too much but at least I got some breakfast and some coffee and excedrin in me.

It felt good to be able to walk there. It is beautiful outside. It was as if I had the cold/flu when I was walking. Life is like this a lot. Funny how before when I felt like this I went to bed and got better. Now, we just need to learn to live with it.....while we are getting better.

It also looks like I will have two down days before the 6 days of training when I get to the training site. This is good. I have learned in the past that if I stay down and recharge my batteries I do better for a short while and sometimes almost feel normal.

I haven't tried to type out something to read to the judge for tomorrows meeting yet.

I think about listening to Amy Tan's presentation in Sac again, but need to focus not so much on the lyme symptoms but on how this is related to work and the others who came down sick at the same time with the same symptoms.

I will send an email off to my supervisor again asking her to list her symptoms, when she got sick...I think it was shortly after I did...and I know she has been struggling the past 3 years too.

I have asked her in the past but didn't receive an answer yet. Hopefully this time she can get to it.

I also asked the other teacher to do the same but she said it is too much for her to try and use her brain and put things on paper.

I have tried putting something on paper to say to the judge, but I find I have a negative attitude about this.

This is not like me. I wonder if there is anything that I can say at this point that will change their minds. I certainly wasn't able to say anything to change the mind of my attorney. But, this was before he received the note from my doc. I wonder if he has read it yet. I have called several times and have not gotten a response.

[This message has been edited by kam (edited 06 March 2005).]
 

Didn't think I was going to be able to make it to hearing. But, took 2 excedrin and was able to get dressed and get to the car.

Someone from the attorney's office meet with me. Said they had not received the fax I sent them from my doc. So, I gave them my original. Wondering if they will loose that one too. It looked like they had not read the info I had faxed them.

Told them about other teacher getting workmen's comp who came down sick and was dx with fibro. Told them she was one of their clients too.

She said it is hit and miss with these diagnosis.

Pointed out that the other one who was dx with CFS/fibro brought me today.

She wanted me to close the case today. I told her I wanted to let the judge make the decision.

She said she would be back that she had another case down stairs.

Came back with the same song and dance. I still felt I wanted the Judge to take a look at things and see what he thought.

She said the meeting would be rescheduled that it could not be done today because she needed to fill out....and then rattled off a lot of acronyms for the type of forms.

Most of the initials she used for things I did not understand, but got the gest of it and didn't have what it took to find out what it was.

I was able to lie down in a dark, quiet, bathroom during this time which was good.

The other teacher sat up the whole time in a crowded, noisy, well lighted room. But, she was hurting the last 30 minutes of the drive home.

We went to get a bite to eat and I could not sit up or eat. I was too weak. I was finally able to eat about 4 today.

Got the Abbot form faxed to the doc for the Biaxin.

It was good to have the brain clear enough to fill out the form. I was not normal, but functioning well enough to get the job done.

Also called and let him know I would only have the Mepron to take while in training for the next two weeks unless the Biaxin could be mailed to me there.

Hoping the meeting is not scheduled during the two weeks of training. Don't know what I will do if it is. I have waited over 3 years for both the service dog and the workmen's comp case to be decided one way or the other.

The attorney seems to think it is a lost cause only because of the workmen's comp doctor's report.

I am confused. I called last week and was told the doc had called in and the had the Biaxin ready.

I got there and they couldn't find it. Asked me if I hadn't all ready picked it up.

So, they gave me 14 pills....enough for 7 days.

It will be interesting to see what the directions are on this bottle and how many there are. I am assuming it is Biaxin.
 

go before the judge.sound's like your lawyer was not prepared.

next time you go,make sure you are in contact with the lawyer a few week
s in advance.this way ,they will be up to date.and it will give you a chance to get more info together.

get dx's from from all your doctor's.list of medication's.it would be good to have all your perscription's listed.

don't give up on this! that is what they want you to do.......gary

------------------


 

Then, there would be the need to ask someone to drive me there....3 hour drive around trip.

Since, I have all ready signed the papers saying I would close the case...I am not in a good position. I did call the next day to tell them no and had thought they had thrown the papers out. Now, I find out they hadn't and mailed the papers.

But, it seems I still have a chance to talk to the judge and let him decide.

I had contacted them via the phone and in person and faxes.

It was as if there had been no contacts and they had decided the only option was to close the case.

I am feeling very defeated this am. I also have not heard from my friend to see if she was able to reserve the hotel for me for the service dog training.

When I call her home the phone has a half of ring and then makes a click sound. I also tried when she is at work and have the same thing happen. It looks like she is having landline problems.

I will call the hotel today to see if she has gotten through.

I so miss being independent.
 

Cognitive skills went out on me more times they I would like.

And I wasn't trying to do multi tasking for the most part.

I was able to sit upright at church tonight for 2 hours and watch a play.

I felt normal as I sat there. It felt great.

I was able to sit upright when a friend came by and took me out to lunch.

Another friend took me out to dinner. I didn't do as well then. And I had the swallowing problem so the dinner is still sitting in the frig.

Didn't have what it took to get $20 out of the ATM today. The brain was not getting the signal to the arm. I also had difficulty with processing. Too many steps involved I guess.

I don't recall if it was taking all I had to stand at the ATM or not. I wonder if I was sitting in my power chair if it would have worked.

It also seems that when I have a good day like today...I can't sleep at night.

The brain feels like it is too big for the head and the ringing in the ears doesn't stop.

I am reminded of when I would go to a concert when I was younger and the ears would ring afterwards.

This is after not getting to sleep until sunrise this morning and sleeping until about 9 am.

I didn't wake up feeling like I was going to be able to do all that I did today.

Sure glad it turned out this way. I am wondering if it is the Biaxin XL or just a good cycle.

I think things picked up in the Spring last year too. But, then summer hit and I was down for the count.

[This message has been edited by kam (edited 10 March 2005).]
 

I am taking breaks in between but the bath, dress, teeth, hair all happened without having to take a break....almost normally.

NO head stuff this am. This is great.

I hope to be able to pack today, get the plants watered, and I am sure there are more things on the list.

I am trying to leave the house as clean as possible. I have always liked to come home to a clean house. But, with lyme....I may come home and have to be bedridden for a long time after my travels. I tend to over do things when I am out and about.

I had the ear stuff going on last night and the head stuff. So, I watched TV to drowned it out until I fell asleep.

I LEFT THERE VERY SAD. I WOULD CRY IF I COULD. I AM STILL HAVING TROUBLE WITH NUMBERS AND WRITING AND PROCESSING.

IT IS ALMOST 2:00. IN THE PAST WHEN I HAVE HAD A GOOD DAY, I DID HIT THE WALL AROUND 2:00. PERHAPS THAT IS IT.

I WILL STAY DOWN NOW FOR TWO OR THREE HOURS AND THEN START TO PACK.

I HAVEN'T OVERCOME THE OBSTACLE OF DEALING WITH NUMBERS YET.

I THINK I WILL JUST GIVE THE MONEY TO MY AUNT AND UNCLE WHILE I AM ON THE FIELD TRIPS AND HAVE THEM DEAL WITH THE MONEY END OF IT ALONG WITH KEEPING THE RECEIPTS FOR REIMBURSEMENT.

I FIND THE EASIEST WAY TO HANDLE THINGS IS TO JUST USE MY CHECK DEBIT CARD. BUT, I WAS AT A COUPLE OF STORES RECENTLY THAT ALSO WANTED ME TO PUT IN MY PIN NUMBER IF IT WAS COMING OUT OF THE CHECKING ACCOUNT.

I NEED TO GET A NEW PIN NUMBER OR FIND THE OLD ONE.

I AM OK WITH WRITING CHECKS IF I DO IT WHEN THE MIND IS FUNCTIONING IN THAT AREA.

I THINK THE BIGGEST PROBLEM IS WHEN THE MIND JUST DOESN'T WANT TO WORK AND SHUTS DOWN ON ME. LIKE THE BODY...I JUST HAVE TO WAIT IT OUT.
 

I keep trying to get up and try again, but the body and mind are not co operating.

It might not be until tomorrow morning. But, that is OK.
 

Had a great deal of difficulty at the Bible Study...I sat for a while, stood for a while and then gave up and reclined. Hopefully, I will recover enough in the morning to water plants and bring them in before I leave...also to finish packing, etc.

I will record two week training when I get back. I do not think I will have access to a computer for 2 weeks or so.

Sure hope I bring a four legged helper/companionn home with me.

Meet with new attorney before I head out. Sure hope he is able to fight for me with workmen's comp.

Also hope we are able to find two men to pick up power chair and put in the back of my friend truck and two more to unload it when I get there.
 

Good news is that I was able to get done what I wanted before the trip...chore wise.

Bad news is that it is Sunday and I am still not feeling human and trying to recover.

I have over done it last week and sat upright for too long on the ride down.

Traffic from 3 pm until we got here was at a snails pace and the roads were packed. Forgot how southern cal can be on a Friday night.

Also had difficulty with money transfer from one account to the other. It has not shown up yet. I have enough to get me by for a couple of days. Hopefully, the money will be deposited so I can go back to using my check card.

Cash, etc....still is not a good idea for me. Discalcula is still a problem.

Looking forward to the next two weeks. Glad I came down early so I could have some down time before it started.

Mind and body are still extremely exhausted and I am not good for much but laying bed watching TV.

I sure miss my computer to help me pass time.

Computer in lobby but I need to sit upright so it is difficult to type and use. Body too weak.

Also had the weakness with breathing yesterday due to over doing it. I haven't had that in a long time because I haven't pushed my body like that in a long time.

And coldness. Had two pairs of PJ's, the heater and drank a cup of hot tea and waited until the body returned to normal.

It is very stiff right now...hard to describe what is going on...but it is a struggle to sit here and do this.
 

Found podi patches and have used them the past two nights. First night on heels and balls of feet. Second night on balls of feet.

Woke up a lot last night, watched a little TV and then tried to sleep again each time.

Lots of gooey, dark stuff on podi patches.

Also started on liquid oil of oregonal and new liquid vitamins yesterday.
 

I am still very weak this am. Too weak to sit upright and eat at a restaurant with my Aunt and Uncle last night.

Had a great deal of difficulty walking back to my hotel room afterwards. I did that skate walk. Stayed down. Sure hope I am able to sit upright today for the 5 or so hours and take in the information.
 

------------------


 

The cat is under the bed.

I sat upright the whole way home in the car.

I also did amazingly well during the two weeks of training. I find I am able to sit upright longer if I stay off my feet and use the power chair.

It also helped to have the focus on Buster instead of the body's aches and quirks.

Buster and I passed the public access test yesterday. He got his new jacket to wear and I got my ID card.

The program was intense but well done.

I am to go back in 6 months to do another public access test and hopefully get a card that lasts longer before it expires.

I need to work on Buster staying in the sitting or down position and stay. I then am to back my power chair up and be at least 5 feet away from him.

I will be working on this for the next 6 months a little inch at a time.

I was told by the person that gave me the public access test and the the toughest trainer...that I did very well with Buster.

She sees things from the dogs point of view and with their best interest in mind, so it was good to hear.

The work is not over. It is just beginning. But, I think Buster and I will do just fine.

I also think I might be turning the corner with this thing. I did better than I have in a long time, the past two weeks. I was able to sit upright for longer periods of time, read the training manual, do short tests, process what was being said and feel productive again.

I also was able to handle the noise and lights of the large shopping mall we cruised with our service dogs.

I did notice how much quieter it is in my home town upon returning.

We will see how things go now that I will need to get groceries, meals, do laundry, more multi tasking and movement and generally be on my feet more.

just a thought...

Lisa
 

What is the treatment for bartonella? I do seem to be doing better since I started on the biaxin.

I also know that I came down sick the same time others did at work. So, I think there is a connection but not sure what it is as of yet.

I was able to attend an in service today for work. It was at a park a few blocks from me.

We had a speaker talk about self esteem to the teachers. He is one of the writers for the Chicken Soup series and lives in Galt, CA.

It looked like he was giving a good presentation. I started fading fast shortly before noon. I ate lunch and then still couldn't follow things anymore so I am now home.

It was good to be there and do normal things and see everyone. There are over 100 teachers.
 

I can't recall how many Chicken Soup Books have been sold now, but it is a lot along with translations in different languages.

He has the first rejection letter framed on his wall. It was from a major publishing company and was very negative.

Boy, did that publisher get it wrong.
 

Not sure what causes this. It seems to happen when I have gotten off the routine intake of food and/or have over done it.

After resting from the presentation, I ran a couple of errands too.

Hopefully, I will be able to do what it takes to get unpacked tomorrow and a few other things around the house.

I try to get Buster out for exercise because there isn't a yard here for him and the apartment is very small.

Seems to wax and wane on it's own.

Glad to see you've gotten your new pooch. Buster, right ? What type of dog is he ? My dad raised "duck" dogs when I was a kid, labs, and retriever's. Great dogs, and did they love to bird hunt !
 

but you do need the rifampin or levoquin to get the bart...eye stuff is CLASSIC bart!

Lisa
 

I even had some dinner tonight that a friend came over and fixed for me. This is good.

I learned there is a school nearby with a fenced in area that I could take Buster too for play time. I am going to try and find it tomorrow.

Buster is a black lab.

I don't think I have been treated for Bart. I wonder if the insurance will pay for the meds. I'll have to give the pharmacy a call tomorrow and see.

I also don't think I have told my lyme doc about the pain in the eye and not being able to move, talk or open my eyes without throwing up.

I tried to record the receipts I have and the cost of the trip tonight. I need to mail the information to CST for the grant.

It is still very difficult for me to sit upright, look at a receipt, and write it down.

I will need to take baby steps with this. At first, I thought I would just mail in what I had and let them figure it out.

But, I need to know more of what is going on so I know who to pay what.

It looks like that will be my project for tomorrow. If I am doing really well..I'd also like to get the laundry done.

And I need to make this small apartment power chair friendly. I learned on the trip that I do much better if I stay off of my feet.

All I can think of right now is to call the thrift shop and see if they want my couch and loveseat. But, then I lay on the couch while watching TV. I don't know if I will have the stamina to sit upright. Sometimes I do. But, most of the time I don't.

If the couch and loveseat go...that leaves the dining table, the power chair, the bookshelves and a rocker that can lay back quite a ways if I take the bar off.

If I were to move, I don't think I would take the rocker, couch and loveseat with me. I might not take the dining room table either. So, I guess the only problem right now is the laying down part while I watch TV.

I was upright for most of the day yesterday. Buster and were out and about for about two hours in the am. I looked for the school that someone told me about with a fenced in area. But, I couldn't find it. I looked in the phone book for the address and couldn't find the name of the school in it.

Still looking for a fenced in area for Buster to play in without his leash.

Still looking for a playmate for Buster too. He liked playing with the other service dogs while in training.

I forgot to put in his ear drops the first week he was here. His ears smell again and he is rubbing them on the floor as they itch. I hope we can get that cleared up again this week.

Health wise. I am not sure what is going on. I feel like I might have finally turned the corner with this. It seemed to start when I started on the mepron and biaxin.

I do know that in the past, I had times when I thought I had finally climbed that mountain and was on the down hill side of it.

But, it didn't last. I sure hope this lasts this time.

I was able to vacuum the house without getting totally drained. I vacuumed while in the power chair. My hope is that I will be able to continue to do this.

I also was able to move the computer into the front room and hook it back up. It has been a long time since my brain was working well enough to do this. It feels great.

I am now sitting upright at the computer as I type this instead of laying in bed with the keyboard on my lap and the screen next to my bed.

I plan on being on the computer much less. I know the body can't handle sitting upright in front of the computer for long.

But, it is a big improvement to be able to do this.

After taking Buster out and about yesterday, I came home and continued to try and get the apartment organized and put things away from turning it upside down two days ago.

I last so much longer if I use the power chair in the apartment to move about.

I still don't understand why as my legs to work. I just don't seem to be able to stand on them for long or walk for long.

It is nice to be in a sitting position longer each day instead of the majority of the day having to be in a reclining position.

I also don't find myself having the shortness of breath if I use the power chair to move my body.

I sure hope this is not a phase and it only gets better from here.

I tend to not want to give myself down time because I am concerned this may not last. So, I am doing what I can now to get caught up with things.

I still need to list medical expenses and find receipts for last year for the apartment manager.

I still need to write a letter to the workmen's comp doc who said this was not work related and give him more information.

I still need to write the workmen's comp attorney and tell him I am no longer in need of his services and will be representing myself. He is not fighting for me.

I still would like to enter my income and expenses on a program on the computer so next year I can just print things out. I did this before coming down with lyme disease. But, have yet to be able to do this for over 4 years now. It will be good to go back to my old way of keeping track of income and expenses.

It will be good just to be able to record income and expenses on my ledger and balance the checkbook first.

I still would like to get the boxes of paper work that are in my bath tub filed.

The priority for today is getting food in the house and fixing it along with hopefully being able to make it to church and get Buster out a few times a day to toilet and exercise. I also would like to take a bath and change the bedding on the bed. And a friend is bringing my laundry over so I hope to get it put away today too.

And I would like to get the list of medical expenses ready for the apartment manager Monday.

It will be highly unusual if all of this gets done today. But, it has been very unusual what I have been able to do lately.

I pray that it lasts.

I am sitting in an oak chair as I type this. My body is all ready starting to ache so much that I can not sit here for much longer.

It seems the power chair is much more comfortable. It also helps if I am not sitting still and moving.

Hopefully, the excedrin that I have yet to take today will help.

It is great when I am out and about with Buster in the power chair. It takes my mind off of the body and on to him. He is great pain meds.

He gets dressed very easily in the am for the day with the exception of the gentle lead.

IT still takes a lot of time to get that on him. I was told to give him lots of treats when he gets it on. I do that. I also use lots of treats just to get him close enough to get it on.

I also was told to put some moleskin around the strap. But, I couldn't find any in this area. So, I purchased a cotton tape. I hope that helps.

I am amazed that I was able to sit upright in the power chair for that long.

I found a fenced in area at a school across town for Buster to "just be a dog". He loved it.

I found a couple more areas on the way home that I will try at another time. They are bigger and will give him more running space.

I also was able to attend a Sunday School Class and church this am.

I did have difficulty with sitting at church but hung in there. Once I started moving again, I was OK.
 

Sounds like you've got a pretty good, new buddy in Buster. Dogs can get a lot of ear mites, so you may want to try Avon's "skin so soft". Fisherman, and hunter's use this stuff all the time to ward off bugs.

Check out vets sites as well, not only do they have a ton of info on lyme, but they'll provide very good advice for warding off bugs for dogs.
 

My teeth hurt, I can't seem to put two and two together, the shoulders and back hurt, vision and processing is a weak, eating is difficult, I need to eat soft foods and still have problems swallowing, the lips are chapped and burning...I think the biggest obstacle is the brain mis firing or firing in spurts and not connected.

It has been great to be able to function as well as I have the past two days. I sure don't want it to go away.

[This message has been edited by kam (edited 04 April 2005).]
 

There are so many new drugs on the market for heartworm, tapeworm, flea repellants, tick repellants, mites, etc. that I'd really suggest talking to a well informed (emphasis on that; a lot are not hep to the new products) vet to see what you can put together for minimal cost, maximum effectiveness, and minimal negative effects.

I've owned dogs for years and thought I knew a lot about this stuff -- but I no longer feel that I do. Our dog spends a lot of time in the house and wrastling with us, and I am, of course, tick-and-parasite paranoid. So I've scheduled a vet chat for next week.

Another good source is the dog trainer or local dog groomer. But -- the potential long term effects of some of the new products, like Revolution, really make me nervous, although I love the one-pill-fixes all concept. I just don't trust it...

There's a new ear mite product that pretty much ends the ear mite problem for all time. Can't remember the name of it, but it worked wonders on my chronically ear-mited cat. Or is the smelly ear problem because of an infection? One of my dogs had teeny ear canals and keeping infections at bay was an ongoing problem.

Best of luck, and I do hope you're feeling better soon.
 

I found out Buster likes butter. I have been keeping the food off of the counters to avoid problems. But, I did leave the butter out this am. When we came back from our outing, I looked over and saw him down the butter...paper and all.

Doing better this am, but need to take it slow and easy today...it wouldn't take much for me to hit the wall again...resources are very low.

I learned I need to get vacines updated in May. There isn't a vet in town or a groomer.

But, I will cross that bridge later...too many other things to do right now.

I also learned that the city does not have a scanner for micro chips. Buster has a micro chip. I just need to make sure I don't loose him.
 

This will allow others to have the gift of a service dog also.

They will come and speak to any organizations that look promising.

I know they recently went to Florida and had a successful trip.

I am trying to think of an organization to contact that might be able to come up with $5,000 or $10,000 but have yet to come up with one. I am open to suggestions.

CST provided as many assistant dogs last year as another major organization. The difference is that the other major organization has a million dollar budget and needs $30,000 for each dog provided.

CST is running on a lot less and is able to provide an assistant dog at $10,000 per dog.

I was impressed with the staff and CEO of CST. Well done.
 

I was reminded of the times I was backpacking and would get a spring shower.

I will always remember the time we hit a spring shower in Aspen Colorado at the Snowmass mountains. That was an impressive one and I came close to hyperthermia. It was to be a day hike to the hot springs.

I don't recall who brought the matches and the hot tea to drink. But, it pulled me out of it.

I also was surprised at how quickly hyperthermia could set in.

Back to dealing with lyme disease....I called the LLMD and he ordered more biaxin.

As soon as I can find someone to drive me the hour away to get to the pharmacy, I will pick them up. I am almost out of the meds I have now.

I am still on biaxin and mepron. I still feel I may be turning the corner here but time will tell.

At least I am able to sit upright for longer periods of time if I stay off my feet and use the power chair and keep moving. Just sitting still doesn't work.

I also am continuing to take two excedrin and have a couple of cups of caffeine the am to help.

But, everytime I am able to sort the laundry I recall those times not so long ago where just sorting the laundry was not possible.

I am thankful for the ability to sort the laundry and hope it doesn't go away.

It has taken all week to get the laundry done. A friend did several loads or me, but I need to put them away. I am doing a little at a time. I also did 4 more loads today. But, two of them were blankets and quilts so they will be easy to put away. The rest is still on my dining room table. Hopefully, I will be able to get them away today.

I have had a few calls on the housekeeping ad. I know I need someone to help, but really dislike the idea because past experiences have been so poor. Hopefully, the new person will be an asset.

I hav

I spilled the box of Tide while on my way there. Now, I need to go to the grocery store and purchase more Tide.

I was completely exhausted and feeling defeated from just putting in some sheets and blankets in the washers.

I had used my power chair to get me there and back.

I was almost in tears because I miss not being able to do the laundry and not have it take almost everything out of me. It seems like it should be a simple task.

When I rolled in the front door there was Buster to great me with his mylar bone and his tail wagging.

That was cool and cheered me up.

My neighbor found my cat and brought him over last night. I had Buster in the front room and the cat in the bedroom.

The cat kept me up all night. He is noctural and wanted to play. He also hadn't seem me in a couple of weeks and wanted lots of petting and to be very near me.

Before Buster, I would let him out at night and he would be waiting for me at the sliding glass patio door in the morning.

I know if I let him out tonight he will not be there in the morning. He doesn't like dogs.

So, what to do. I need my sleep. I tried putting him in the bathroom last night with food and water and a litter box. But, he makes a sound that is very annoying when he is not a happy camper.

Then the dog starts up in the other room.

Unless I can come up with a solution tonight, I will be letting him out. I need my sleep.
 

Rough night...but only because I couldn't sleep. It happens sometimes, but much less than it use to.

Took Buster out to smell the daisey's this am and then came home and caught up on a little sleep. I rested for about 3 and a half hours. I was able to get up and make meatloaf and put purple potatoes on to boil.

I mostly likely did not sleep last night because I am not getting enough food in me during the day.

It was good to be able to do the multi tasking that is involved with making a meatloaf. I brought everything over to the dining room table in order to mix it. I used my power chair to get around. All went well.

I recall trying to sit at a counter and make 3 salads some time ago and the multi movement and tasking was too much. I had to become a couch potato for a while before I could eat dinner that night.

I was at my limit with this and will be reclining again until it is done.

It has been so long I have forgotten how long to cook the meatloaf and what temp to set the oven. So, I winged it.

I reclined near the window this am as the sun was shining through. It felt so warm and toasty. I have arranged the recliner so I can see out now. It is great to be outdoors more with Buster and to be able to see out more when I am indoors. I am not much of an indoor person and am looking forward to being about and about more as I heal financially and health wise.

I was a person with a dog again while I was out instead of a disabled person in a power chair. I like that. I get lots of comments on what a handsome dog Buster is. I like that. I think he does too.

I just need to figure out some way to keep him from waking me up at 3:30, 4:00, 4:30, 5:00. I finally get up at 5:00. There has been times when he hasn't woke me up until 6:00 but that one was rare.

I have tried letting him have a long play time in a fenced in area but that didn't seem to work. I wonder about feeding him later.

I have been feeding him abou 5:30 ish and then taking him out an hour or so later.

I wonder about feeding him later in the am too. He seems to go back to sleep as soon as I feed him in the morning. He seems to take a nap after his afternoon feeding too.

I was told to feed him a cup and a half twice a day while in training. But, when it was time to come home the trainer told me he feed Buster one cup twice a day and to give him lots of treats during the day.

Both the trainer and the head of the CST and other trainers have told me to give him lots of treats for a job well done so I will keep up with this for a while.

I am still having trouble getting him dressed to go out. I think I need to find a treat or two that he wants more than resisting me when it comes to getting dressed.

He does put his two feet on my lap or on the foot rest to get undressed without any treats. No problem getting undressed.

Stopped at Micheal's Craft Store and barely made it out to the car. Laid back for a while and then was able to sit upright the rest of the way home. Also able to listen to a soothing CD while in the car....which is a new thing as it has been too much in the past.

I also used power chair to clean kitchen this am. All of the chores exhausted me but if I kept them short I was able to complete them.

Tried on a pair of shoes while in western shop and started the heavy breathing...still having trouble with multi movement and multi tasking.

Also, just standing upright in store is enough. Body and mind can't handle trying to purchase anything or find something to purchase yet. But, being a lookey loo is very enjoyable at this time.

Friend also took care of lunch. I just ordered what she ordered and she paid for it.

Reading and processing the menu and getting the money out to pay still is more than I can handle at this time. I have given people my purse in the past and asked them to get the money out for me and pay for the meal.

I guess it is the multi movement and multi tasking.

After walking into pharmacy...I wasn't sure I was going to be able to say my name there for a while. AFter being still, I was able to talk.

All is all. I was very pleased with today as I was able to sit upright and be on my feet for quite some time.

The other stuff will come.

Sure hope I didn't over do it and will not be able to go to tomorrow's meeting.

I do plan getting in my camping recliner and watching TV the rest of the night. I was gone from teh house from 9:30 to 5:30 today.

It is a new thing to also be able to be in the camping recliner. Before, I could only sit in it for about an hour and then I would need to lie down.

After loosing strength and connection between brain and legs today at craft store, I am thinking of changing from shredded wheat to Wheaties for breakfast. HA!
 

------------------


 

The Oscar...no
A box of wheaties...no
A ribbon...no
A trophy..no

Hmm...what could we come up with for those who beat this?

Their picture on the hall of infamous lyme web site? Possibily.

Their picture in Lyme Times...possibly.

Their picture on the wall at their doctor's office? Possibly.

An autographed picture of...where is my imagination when I need it?

I know..a denin shirt with a picture of a tick packing his bags and leaving home.
 

As for your slogan...........in honor of the ducks........how about a bumper sticker that say's......."Another Fibromyalgia Survivor".
 

I think the bumper sticker needs to have the lymenet web site on it.

Gosh...there could also be bumper stickers for many of the other labels that we were given instead of lyme.
 

I am still limited on what I can do before my brain goes south on me. I am beginning to wonder if I will be able to do this.

If I can, it certainly will help in the long run.

It is something that I didn't even think twice about before lyme. Now, numbers are still an obstacle.

I also interviewed a person to help out. I was pretty much out of it and should have told her I would get back to her. Instead, I asked her to start tomorrow.

I also have a person scheduled for an interview tomorrow. Not sure what I am going to do about that.

Sure hope I figure it out soon.

Problem solving and thinking in the head is still not working for the most part.

The body and mind it seems are still paying for being on my feet Tuesday.

Or, it is just the nature of the disease.

I am going to try to move now. I can tell all ready that my body will be very stiff and the connection between the brain and the limbs will be weak.

I do plan on using the power chair to help me go for a short cruise with Buster.
 

I am impressed with your determination.

Wondering whether it might help you to do your banking on line. I signed up for it,free, quick and easy. Now my bills are paid with only a couple quick entries and I can see the balances any time day or night.

Since you have quicken, you can then download your banking entries right into it.

It will take some amount of effort in the first few tries, but is really easy after tha first entries.

Just a suggestion.

Keep up the good work with Buster and I hope you are feeling better every day. Both hubby and I have Lyme and know what a roller coaster ride it is!

Wizard
 

I did contact my bank and was told they are in the process of working with Quicken and will let us know when it is complete.

I originally thought I would not have to enter everything one by one.

It is so confusing at this point. It will be good to know what I am spending on what and what the running balance is once again.

It will also be good when I can work on it for longer than 20 minutes and when it does not seem to drain the brain and I have to veg in order to recharge it.
 

Buster and I went to the post office together. I did not use the gentle lead. HE did fine for the most part.

We were talking to a neighbor on the grassy area when the sprinklers came on.

I had been meaning to give him a bath. Since we were half soaked anyway, I finished the job.

It wasn't difficult at all. It did take a lot out of me but Buster was no problem at all. He just sat there as I soaked him down and then shampoo, and rinse.

He cleans up well.

My neighbor told me that we are not to use the water the next 3 days because of a notice in the PG&E bill that I did not read.

This does not make sense to me as PG&E does not provide water to us. That is provided by the city.

She said that if we use the water and electricity that they would turn it off.

I don't know about this. I also am not that concerned with the exception that I will do my laundry that is long over due today.

I have two doves making a nest in my bird feeder that is hanging on my patio. It is the coolest thing. I like hearing the noise they make and watching them carry the pieces of sticks.

I sure don't understand why they choose that area. I leave the door open and the dog goes in and out when he wants.

It appears they are both working on the nest. Good concept for parenting. We shall see how it goes when it is raising and feeding time. And they call them bird brain. I think the two legged humoids with much bigger brains could learn from them.

Health wise I continue to be able to be upright until about 10 am if I stay in my power chair. I recline for quite some time and veg in front of the TV until the afternoon/evening.

I will most likely take a break now and then try to do the laundry this afternoon.

Don't know if I will be able to work more on the medical retirement forms, workmen's comp or Quicken but I hope so.

I think Quicken is quickly going on the back burner. The other two need to be done this week or sooner.
 

Doesn't make sense to me..but it does seem to help with stamina.
 

I only wrote one email and then copied and pasted the other one, but my mind and body are shutting down on me. Need veg time again.

Last time I did something like this it took a long time before I was able to type a letter again. Short stuff works but longer stuff is still a challenge.
 

I hope this continues and that you get that Workman's comp thing going too!

Give Buster a hug for me!

------------------
oops!
Lymetutu

 

I walked around the circled area. I think I was on my feet 5 to 10 minutes. I was normal during that time but got back in my power chair just in time. I could feel the body fatiguing. I also tried to run a little. It was as if I was running in slow motion. Connection between brain and limbs still needs improvement. It will come.

Able to type letter to workmen's comp doc yesterday at one sitting. My shoulders and neck were hurting but being able to sit upright and type for that long is new and feels good.

I also think I kept the train of thought going. I will read letter this am to see if it makes sense.

I have a new housekeeper/caregiver. She is pleasant. Makes it about half of the time. But, since I am doing better this is not a big deal.

It helps to have someone else doing these things. I would be snowed under fast if the household chores were not being done right now.

Eventually, I believe I will be able to do these things too along with feeding myself and normal household duties.

Eventually, I think I will be able to volunteer in the classrooms too until I can work myself up to substitute teaching and then full time teaching too. It is slow going.

I do need to get this workmen's comp, Quicken (finances in order), CAlPERS stuff done ASAP.

After that, I need to look into taking a class in order to keep my credential active. I also think I need to work in the classroom for a certain amount of hours. I need to look into this.

I know credential expires in Jan. 2006. Not much time for a lyme brain.

I have been going to a Bible Study class since I came back from training. I have been taking the book with me to study while Buster runs and plays in the morning.

I recently realized that the book is broken down in weeks and has one chapter to read each day. It is do able. The chapters are short.

This means the mind is finally clearing up enough as well as the vision. I sure hope it stays. I have been here before only to loose it.

I also am able to say the Lord's Prayer now in the am and put on the armour of God. So, that part of the brain is working again.

I still need to take small steps and keep it simple.

I don't know how well I would be functioning without the excedrin and caffeine each day.

I did try to cut back on the excedrin and found my body and mind came to a stop quicker in the am.

So, I went back to 2 excedrin. It seems like a small price to pay in order to have the ability to do a little each day.

I continue to get down about 9:00 or 10:00 am and recline in front of the TV until about 5:00 pm. Then, I try to do something again...but not much. I feed Buster. Wait an hour. And then take him out to exercise.

I need to take him out for longer periods of time. The past few nights, he has been restless and I have found myself taking him to the local grocery store parking lot to exercise him while I am in my power chair around 9 pm.

He use to nod off to sleep at this time. Now, he is much more active in the evenings.

I think he is over his ear infection. He seems like a much happier/lively dog lately.

He still puts his head down when I put on the service jacket. I am just doing it for short periods of time.

I also stopped treating him when he corrects the behavior. I think he was working me on that one. It seems it takes 3 tries and then he heals and walks along side the power chair normally.

My next step is to not talk during this time too. I am thinking he is doing this because of the attention he gets at this point, but not sure.

Perhaps he just doesn't like wearing clothes.

It helped that the temperature was good, I had a stream nearby to jump in and out of and boulders to lie on.

But, that was when I was younger.

I am looking forward to when I can take Buster to a place like that to run and play and swim.

I will have clothes on this time. HA!

I am wondering if both doves are taking turns sitting on the eggs.

Just the fact that you're thinking about skinny dipping again, tells me the abx must be working.

Make sure your PICC line is out before diving in !
 

It's nice to see you have been feeling better. So happy for your improvements. Can't wait for you to teach again. It's great to see you looking in the future.

Heather

Your dog sounds fabulous.
 

NP40..yep. I must admit, I wonder at times who is training who. They say you need to be smarter than the dog. HA!

I was having a little bit of trouble managing him one evening while we were out. He was off leash. I thought to myself....and you use to manage a classroom full of kids...now one dog is too much for you.

But, the next day went better.

Buster got to meet Zora a couple of days ago. Zora is a black lab guide dog.

But, Buster was more interested in Zora's pool than Zora. He was in and out of that pool a lot during the 30 minutes or so we were there.

I sure hope they let him use the pool here at the apartment when it opens. I am thinking if I go while the kids are in school and no one is using it we will be OK.

I woke up later than usual today. I missed not getting out and watching the sunrise and the sounds of the day at sunrise.

I walked across the carpet in my bare feet and it was wet. The kitchen floor was also wet. My first thought was Buster.

But, it was a lot of water and it did not smell like pee. The more I tried to clean up the kitchen floor the more water there was coming from under the stove and refrigerator. I checked the pantry...the floor was wet in there too. Buster was off the hook.

I took him out and he peed up a storm as usual.

I woke up stiff and foggy this am. When I had breakfast, I noticed I had forgotten to take last nights meds. So, I doubled up this am on the Biaxin and the Mepron.

I also have been doing too much lately. It has been fun being out and about. I also know this will not last as we will be getting triple digit temps soon.

Symptom wise, it still is too much to try and just sit but I seem to be OK if I am moving in the power chair and my focus in on Buster instead of the aches and pains. I still need a lot of down time.

The ringing in the ears has let up and is less frequent.

I also have been able to read a week's worth from the Bible Study. It is only 3 pages a day which works for me. Anymore and I have to have some down time first.

I am hoping I will be able to read this weeks too. I have not tried to read the Purpose Driven Life. But, I have been able to read a few pages each night before going to bed. It is great to have that skill back too. I sure hope all of this lasts. I know I have had this happen before and then went a long time before I could do it again.

The housekeeper finally made it today. It is good to see her. Especially today. I have lots of wet floors and towels and other things from the water draining into the apartment from the roof. He said the gutters were blocked with leaves which caused the water to drain else where. I can understand it coming down the vent that is in the ceiling in the pantry/linen closet. But, I don't understand how some of the other water got where it did.

I called and left a message to make an appointment with my lyme specialist. I have not heard back yet.

I need to rest now. Then I will try to get some more done.

Still working a little at a time trying to figure out where I stand with my checking account, get medical records together (may be too late for this), write workmen's comp, etc.

It is a slow process and I am not sure if it is worth the time and energy to do it but I need to give it a try.

It is nice to have the brain working well enough I can try these things for short periods of time.

I was able to make breakfast this morning because I used the power chair. I could not have done it on my feet.

The problem is that Buster ate my bacon while I was showing the maintenance man the water problems in the pantry.

My mother in law has a dog named buster. She slips up and calls him "BASTARD" sometimes.

At first I thought this was mean. But it is kinda funny.

Dogs can not resist bacon. Whenever I have to leave the room and there is food around.... I'll stick it in the microwave or oven or fridgerator.

Have a lovely day,
Heather
 

It is back. Only this time I have been able to eat. This is good. Hopefully, it will go away soon. Movement is still a problem. Need to stay down but not as bad as before.
 

I'll have to wait things out once more.

Perhaps this afternoon I will be able to do a little more.
 

I went to the store to get some water this evening. A lady tried to talk to me but I couldn't take in what she was saying and had to let her known. I tried to fake it at first, but it got to be too much.

Moving the body is still tough but I was able to do the 5 minute walk. I could just tell the brain and limbs were not working.
 

Hope to be able to get to the grocery store. Just had a can of stewed tomatoes for dinner last night.

Still very weak and brain not working well.
 

Saw one of the housekeeper workers yesterday while I was out and about in my convertible (power chair).

The interesting thing about this is that I recognized her. In the past, I have had people in my home and not be able to recognize them when I saw them around town. Not sure why. Processing problem? Too exhausted?

Heard from State Fund regarding workmen's comp. They say I have seen a psych and wish to schedule a hearing to complete this process.

Plan on finding out who I saw and writing him or her with updated information.

Also hope lyme doc will write something for me to take to hearing.

Spoke to other teacher who came down sick with same symtpoms 2 weeks before I did.

She said that once medical retirement is approved she will look into seeing my lyme specialist. I feel it is low priority with her. She was dx with chronic fatigue and has not been treated since Sept. 2001, but continues to complain. She will not step out of the HMO box and get help.

I also need to file the I & A form for workmen's comp canceling my attorney.

Health wise I think I am doing well until I over do it.

Yesterday, I felt strong enought to walk for 5 minutes and then even tried to run a little with Buster. When I got home my body was shaking and I was down for quite some time.

So, I am doing OK as long as I continue to use the convertible (power chair) to move my body and have lots of down time.

I was able to get to the library yesterday and check out a few books. I am still able to read a little in the evening at bedtime. I really like having this skill back.

Also am aware that the brain is doing better as I am able to figure out state fund, workmen's comp and tackle the forms.

I can do these things if I have lots of down time and then give them a try. I have had the I and A a week or so now and have yet to fill it out. I hope to do this today.

Computer has been down for the past month off and on. I was able to wipe everything out and restore things.

It seems to be working now but I have not downloaded the printer yet. This may be what caused the problems last time.

CST did not receive my receipts for the two week training. They said if I can re send things they will get a check to me.

I still have boxes of paper work that need to be filed and taken care of.

It is slow going, but I have hopes of being able to do these things.

Still haven't been able to balance check book yet either. Lost data I had entered into Quicken.

Also can't seem to find way to contact Norton to let them know I would like to cancel order or download it again.

Haven't found a resource to contact them yet.

It appears they take your money and then leave you out in the cold.

My brain is hurting just by typing all of this stuff.

I finally heard from the lyme docs office. I have an appointment this month. Need to find ride to appointment.

I also need to find ride to get meds. Drug store is an hour out of town.

Dog needs shots too. No vet in town. Am thinking of calling feed store to see if they have shots I need.

Not eating well. Trying to do other things instead. It is still a trade off...either use energy to eat 3 meals a day or do other things and eat something easy and quick...like yogurt with fresh fruit or pick up a coffee and a scone at Starbucks. Not good.

Still able to sit upright for longer periods of time. Really appreciate this ability.

New housekeepers started. Hopefully, they will work out. When they come they do a good job.

But, call and reschedule a lot. Not reliable at this point. But, since health is doing better I am just thankful for any help I get.

I need to have them fix something to eat for me.

Still breathing heavy when I try to move the body or do multi tasking.

Still have weakness. Thankful for Buster who helps me get up when the body is too weak to get up off the floor.

He also helps pick things up off the floor that I drop.

Buster pulled me out of the power chair yesterday. I didn't have the gentle lead on.

He saw another dog and took the arm of the chair off. I grabbed the arm and was pulled out of power chair. The chest muscles were really sore after that. I figured I pulled something. IT was scary at first. Wasn't sure what was going on with pain in chest. IT is just sore today.

Hard to know when I will be too weak to keep things under control and when I am not until I need to find out the hard way.

Saw a guy digging under the pine trees where I take Buster to exercise. He was getting bones out of the bird droppings. I was amazed at the size of the bones. It must be a big bird that sits up in the trees. It looks like skulls of rats or mice...I assume.

He said he was doing time lapse photography with the bones??

IT is good to be out and about more. Still need to keep things simple when I am out.
 

But, at least I was able to sit upright. I was upright until noon. Stayed down until 5:00ish and then back up again. Down again around 6:00. Took Buster out around 6:45 pm.

I was told to take him where other dogs have gone in order to do the do. I began to wonder just how many other poopers he would need to sniff until he felt the urge.

Two hours later, he finally left his deposit.

Every time I gave him the command to go...he went...he peed. I had no idea dogs could pee so much.

So, all in all....I was able to sit upright for approximately 9 hours today. Wow. Most of it was on the move in the convertible (power chair).

A friend stopped by and said she wondered how I would do when the heat hit. She reminded me that this is short lived and I will most likely be back down when the heat hits.

I was able to walk twice today for around 5 minutes each time.

When I came back from the Bible Study, the dishes were emptied from the dishwasher, the carpets had been cleaned and I was told vacuumed 5 times, the clothes were clean and put away, the bed was made and I was so relieved and pleased.

I sure hope Buster and I sleep well tonight.
It seems when I do too much during the day, I am not able to sleep at night??

I wonder how t
 

I have been in a similar place with Lyme. I was on one month IV Rocephin 2 grams a day. Then on 9 or 10 months on oral Doxy, 400 mgs a day. I felt a lot better immediately on Rocephin IV (but that was relative to how I felt-anything would've been better!) But it still took almost this whole year to be completely better. I just got off meds, and I have my life back with all my senses and mind and body.

I am happy and healthy and hopeful for the future. Even a couple of months ago I would not have believed I could feel this way.

Hang on. Keep taking the meds. If something isn't working at all, talk to your doctor. Don't let any doctor give up on you. Fight it.

I wish you well from the bottom of my heart, and everyone else fighting this disease. It's amazing how little people know about it, and it's impact on people's lives.

Keep writing here. Read other people's experiences. Realize that the people who have gotten better don't usually write anymore because we're out there doing life again. But we are well. Believe it, and get through this. I think you can.

Meemer
 

I got the fax off to CST...12 pages. It felt good to be able to do this with a clear head.

My fax didn't work so I took it to a local store.

I slept from noon until 4:30 pm. Buster woke me up and then went back to bed. He did that this morning too. Not sure how to break him from that.

Buster and I will probably be out from 5:00 until 8 this evening.

I am still able to read a little each night.

When I tried to make a salad for dinner tonight, I was so worn out I didn't feel like eating it. I also was not able to cook the salmon I had planned on. Perhaps later.

I sat in my power chair to make the salad but the multi movement and tasking is still exhausting.

Sat at a local coffee shop this AM and listened to a local pastor talk about drag racing, Pismo Dunes and Glamis.

I use to do these things so I knew what he was talking about. I was able to follow the conversation for a while, but found myself getting angry at him.

I realized the anger was because it was taking so much out of me to follow the conversation and I was at my limit.

It was not his fault the brain can only listen and process for a limited amount of time.

I learned that some of the cars go through tires worth $6,000 in a few runs down the drag strip.

The fuel costs are in the thousands also.

I know it must be fun, but that use of money in my book is a low priority.

It would be fun to go for a few runs on the dunes too.

I had the ringing in the ears while I was sleeping.

I also heard on Oprah today that if the body has not exercised in a long time it will get dehydrated quickly.

I wonder if that is why I get so dehydrated when I try to move on my feet.

I wonder how I will be able to get out of this chair and get my legs back under me and still have left over energy to fix meals.
 

I am fairly new to this discussion group, but have read most of your posts now on this topic. Just wanted to thank you for your posts, they help.

I believe in several of your posts that you mentioned that you have nausea frequently (correct me if I am wrong). I too have had this symptom, and had tried a couple different prescriptions for it to no avail. Last month I had the nausea for a week and a half of so, so went in to see a doc again. This time I was given a prescription that worked. I thought if you were still having problems you might want to try it if you haven't already. What I was given is Ondansetron (Zofran). It is expensive I've been told if you don't have insurance but it has worked for me when nothing else to this point had. I have lost almost 70lbs due mostly to the nausea. Now when I take a pill it completely takes the nausea away.

Thank you for your encouragement through your posts!

D. Lee Muse
 

It's better than a favorite tv show or novel because the main character is a real person struggling with a real yet downplayed/little understood illness.

I love hearing about your dog, too.

I'm not done reading all the way through yet, but know I will look forward to reading your posts here...what a great idea to chronicle your story and keep everyone up to speed with how things are going!

Thanks!

This post has helped me keep my sanity.

Since I am feeling out of sorts this am, I thought I would try and write about what is going on.

It started last night. I call it the body shutting down. It is couch potato time...only I no longer have a couch. I gave it to the thrift shop in order to make my small apartment power chair friendly.

I cut Buster's time off leash this morning short because I was so low functioning. It is one of those times when movement makes you feel sick to your stomach and an all over sick feeling.

I also had the limbs going numb or to sleep on me again.

Herx time?

I came back from taking Buster out and picked up his bowl to feed him. It took me awhile after I had rinsed the bowl out to recall what I was doing. I just kind of stood there, looked at the bowl in my hand, and the mind was blank.

It didn't last long. Buster looked up at me and I looked down at him and then recalled what I was doing.

Then it was time to fix breakfast. That was a challenge too. Too much movement to fix cereal. Too much movement to scramble eggs. I put the tea pot on and made some tea.

Then pot some water on to boil and poached an egg. Didn't cook it enough but ate it anyway.

Time to get down for a couple of hours and see if things improve.

A friend said she would take me into the pharmacy an hour or so away to pick up my meds. I need to call them around 10 to see if they have them.

Sure which local pharmacies would provide the meds. But, they kept telling me I need to pay cash because insurance will not cover it.

I go to the pharmacy out of town and the insurance covers it.

I also have other important paper work to get down today, but can't do it right now. Hopefully, I will be able to later.

And I need to get a crock pot meal going so when I am this low functioning eating will not be a problem.
 

It sure would be nice if the local pharmacy would co operate. But, it also was nice to get out of Dodge so to speak.

Looks like I will be continuing with Mepron and Biaxin. I sure hope it continues to help improve matters.

I tried to go back and read your posts again this morning. That part of the brain is not working yet. I can read them but the processing and replying is still off line.

I will try again later after I have had my meds this am and some Chai Tea or excedrin extra strength.
 

You're definitely on the right track to health, unfortunately, it takes a long time. Chroniciling your experiences has been a boon to many people here, and a living testimony of what lyme sufferers go through on a daily basis.

You're a wonderful person, with an indeflatable spirit, and many here long for the day when you kick this horrible illness. You will.

I think Buster was a great idea. He's a handful, but a great companion. Pooches are wonderfully loyal, and trusting. It seems you can make a bond with them that almost borders on a sibling relationship.

My Dad trained a lot of dogs over my youth, and some of it actually sunk into my thick skull. If you need help with Buster, don't hesitate to ask.
 

I logged in to log in. HA! I was feeling defeated today, but your post helped to encourage me.

The brain and body are not working today. Not sure why. I did take a spill in my power chair first thing this am...just laid on the asphalt for a while. Buster stayed with me and licked me in the face.

I got my left foot caught under the power chair and my ankle is swollen, bruised and is missing skin.

My whole body feels like I fell off of my horse or motorcycle.

Hoping to take a epsom salt bath tonight. Hoping it helps.

Doctor's office called and wanted some forms faxed to them. I was not able to do it today. Wish I had what it takes to get the Lexmark all in one printer figured out so I can fax from home.

Wish I had the paper work filed instead of in boxes so I don't have to go through a lot of papers to find one.

NP...this does take a long time to overcome.

And I do know I have improved. Thanks again for your post. Sometimes I wonder if I am on the right track.

I am also frustrated today because I need to figure out how I am going to get to the lyme specialist appointment this month.

He was booked for the usual meeting place.

So, it looks like I need to travel to his main office. Amtrak does have a station in that area.

But, I would need to stay overnight as I can not make the trip in one day.

I am just not feeling strong enough right now to make such a trip.

Perhaps tomorrow will be a better day.

I sure don't know how the people do it that are dealing with much more than this.

Sorry to here about the spill you took on the power chair. You weren't speeding were you ?
 

I also was able to find someone to take me to the bus/train station. Need someone to load and unload power chair.

They also had an opening with Amtrak. This is good.

And I can stay at my friends house in Southern CA. This is good.

Buster will have a play mate and a yard to run around in. I also am hoping we go to dog beach.

My friend will pick me up at the train/bus drop off but will be a little late.

Her daughter will take me to the docs the next day and my friend will pick me up.

Just need a ride to the family reunion on Saturday now and to make arrangements for the ride home.

I also was able to do the dishes and take out the trash and find a few clean clothes to pack.

I am exhausted, but it is good to get these things done. The body hurts and the brain is starting to shut down. I also continue to have shortness of breath or feel as if I am climbing a mountain in high altitude with a backpack when I try to stand on my feet and do these things.

I wanted to stop and get a cup of coffee this am while taking Buster out to toilet, but didn't have what it took to do this.

I also was not able to talk to my mom when she called yesterday asking when I would see the doc next. She spent too long talking about things that happened 40 years ago that she had already told me. My mind can only process so much and then it is gone.

I tried to say the word Friday when she asked when I was seeing the doc next and all that came out was Fa...Fa....Fa.

I also had difficulty last night when I tried to communicate to my friends answering machine and my other friend about a ride to the train/bus station over an hour away.

The good news is that I was able to cook the Chicken Tortellie (sp?) soup last night. I have tried several times before but the vision, processing, and limb/brain connections were off line.

It was easy last night. But, I tried it after being down for 5 or 6 hours.

I tried talking to my mom right after coming in from Bible Study yesterday morning so I was at my limit before she started talking. She is one of those people who zap your energy so you need to be in pretty good shape before you tackle talking to her.

I had been out and about from 7 am until noon yesterday. Two or 3 hours at the Bible Study and the rest of the time cruising in the power chair with Buster.

I had left early to go to the Bible Study because I thought I would let Buster run off leash in the fenced in area at church.

But, they were spraying pesticides in that area so I had to wait a hour or two until he was OK off leash in the area.

So, we cruised around town.

Now, to cruise on over to the grocery store to get cash and hopefully be able to get a strong cup of coffee at STarbucks.

Perhaps I will just purchase some fraps at the grocery store to help me endure the many hours in a vehicle, train and bus today.

I don't know why but the coffee and excedrin seem to help me to be able to sit upright for longer periods of time. Doesn't make sense to me.

I just got back from the trip to see the lyme specialist and the family reunion.

It takes a village to get me places now a days. I am so thankful for the person who drove me an hour or so away to the Train Station, for the people who loaded and unloaded the power chair, for the person who picked me up from the train station and the Amtrak person who helped load the power chair into my friends SUV, for the person who dropped me off at the doctor's office and the one who picked me up, and the person who let me stay overnight at her house, and took me to my daughter's house, and for my daughter and son in law taking me to the family reunion, not minding me staying at their place, and took the power chair apart so we could get it in the Honda to load on the Amtrak Bus, and the person who picked me up at the train station and took me home and the people who helped load and unload the power chair again. Whewph!

One of these days I will just get in the car and go. I am ready to give driving a try again. Well. I think I am ready until I do something stupid in the power chair due to lyme brain.

I had tried to help my friend out by sweeping the dog hair up at her house while I was there. (She has two dogs and then Buster made 3.) I also was able to take a shower, and put the dishes away. But, by the time I got to the doctor's visit in the afternoon...I was in a fog. I will not do that again.

It looks like I will be adding rocephin to my treatment plan again.

I wish that I had written down or remembered to record what was said.

I also recall Juice Plus or some other product being suggested, but my friend has the paper work on that as she is thinking of ordering it for herself.

I need to contact her about that.

It is so good to meet with a doc that still has the same goal you have.....to regain your health...and who believes it is possible. It seems docs such as this are difficult to find.

Buster is in his crate trying to recover from the hoopla.

I need to be in my crate too. HA!

All in all...I was able to sit upright for long periods of time. I did have difficulty with processing and talking at times.

Not sure what is going on with the communication part of the brain. I try to break it done to one thought at a time and one word.

But, even that doesn't work at times.

It happens when I am over doing it and need down time.

But, even with over doing it...I don't have the feeling that my body has been run over by a Mack Truck most of the time.

I feel I am slowly getting back on track.
 

The grocery store was rough.

Need to recover from trip to doc.

Hope to get more done tomorrow. Plants really need a drink of water.
 

i am also glad you get along with your doc.make's your treatment,alot easier.

be well ,gary

------------------


 

While I was out, I thought like I did when I was well. I had lots to do on my mind and made a list.

But, after I came back and fixed breakfast....I was so exhausted it was down time again. Hopefully, I will recover soon and be able to get some of the things done on the to do list.

I also did not use the power chair to fix breakfast as it needed recharging. Being on my feet continues to take a lot out of me.

My mom called yesterday and after listening to her for a ? amount of time, I had to cut the conversation off. Once again, my brain felt as if it was swollen or something after trying to listen to her. The processing part is still not coming easy yet and takes a lot out of me too.
 

I took a shower this morning, got dressed and ate a bowl of cereal. I was feeling pretty spiffy because I recalled when I couldn't do all those things without resting in between.

But, my body and mind soon crashed afterwards. I had difficulty talking and thinking again. At least my body is not hurting all over like it use to nor does it feel like a truck ran it over.

I got in my reclining chair and stopped fighting it.

Then took Buster out for a short walk in the park. I need to feed him and myself next, rest and then take him out for a longer walk when it is cooler.

I found out that MediCal is paying for the Mepron today. This surprised me but I am glad it worked out that way.

Tomorrow will be Friday and I still haven't gotten the thank you notes off to all those who helped get me to the docs, the paper work for workmen's comp done nor other things which I can't recall right now.

The good news is that the housekeepers/caregivers came today and I now have clean clothes, a clean house, food in the fridge, and a clean bed to sleep in tonight.

It frustrates me that I still can't do these things for myself but I am thankful for them and that the county is paying for this.

They asked me what cold fish oil was on the grocery list and I had a great deal of difficulty saying it is a supplement.

All that came out was s...sss.sss.

I also had a great deal of difficulty signing my name on the form for them to get paid for their work and on a check.

I do this when I have over done it and need down time.

I did try to contact Brian Fallon about a doctor of psychiatry that is lyme literate for workmen's comp. I left a message.

The phone rang a few times today but I didn't anwer it because I wasn't able to talk yet. No one left a message. I guess they weren't able to talk either. HA!

Time to find the scarf's to keep Buster and I cool.

I think the cooling hats would help too.
 

Not sure if it is a herx or if it is because I used the brain too much yesterday.

I find that as with physical use....mental use also needs to be limited.

And both seem to be stronger at times and weaker at other times.

The only constant I have found is that if I don't use either for a while, I am able to use them normally for short periods of time.

As if I was running on batteries and needed to recharge my physical and mental part of the systems.

Need duracell batteries. I must be using those cheap ones because they do not keep going as the ones in the bunny commercial.

When my head is doing better...which there is a little improvement from this morning but not enough....I will go back and see if this is possibly herx time. It seems it has been happening about once a month now for two or three days.

I haven't been able to read at night again lately. I sure hope that doesn't last. I really liked being able to read.
 

I am hoping it is over with today and I will be able to function a little bit today.

It seemed to last about 12 hours yesterday. I am still low functioning right now but at least I can open my eyes and am sitting upright. I also am not vomiting.

The next step is to see if I can get dressed, eat breakfast and take Buster out to toilet and run and play.
 

But, that was it. So discouraging.

I don't know what today will bring. I woke with the head stuff again...took two excedrin..hope that helps.

I also know I need to get lots of water down me today. I have been short on getting water in me.

The weather was much better yesterday. In fact, I was too cold when I was out and about in the early morning and evening.

I was still dressed for the hot weather and hadn't noticed it changed until I was out in it.
 

sending you wellness thought's....gary

------------------


 

I have not taken meds yets this morning. This feeling is not new. I just have it less frequently since I have learned to pace myself, give myself lots of down time and wait it out.

Guess I pushed it this am. I will probably recover if I let myself just veg out for a couple of hours.

My mind doesn't want to veg out but wants to get a few things done. Since the body is not co operating, I will veg out.
 

In the meantime, one of the large dogs jumped in on my lap and covered me with mud.

I was too weak to get him off. Talking was also very weak.

A lady saw what was going on and helped me.

I came home and took a shower. I was too exhausted to dress so I reclined in my camp chair to try and recover.

I don't know how long I was asleep...two or three hours.

I thought I was making progress and then felt discouraged this morning.

I got dressed and went late to the Bible Study. I met everyone at the leaders house for a pool party.

After staying in my power chair for a hour or so, I decided to try and put my swim suit on.

Walking and dressing were still a problem due to weakness.

But.....my body did great in the pool. I was able to stay in for quite some time.

A big improvement from the last time I tried swimming. Two years ago, I was only able to do one lap and then had to sit on the steps until I got the strength to get out of the pool.

I also was upright from about 10:00 to 3:00 pm today. Hurray.

Yesterday, I went into the next town with a friend to pick up meds, eat dinner and do a little window shopping.

I did very well. I think that was why I was so weak this am.

I am still weak and will most likely be down the rest of the afternoon until it is time to take Buster out.

Buster did very well around the kids. He really likes water and was in and out a lot.

He also helped me get out of the pool. I used his back. He braced his self and I was able to lift myself out of the pool. He also helped me get in the pool the same way. I used his back to steady myself as I got in and to hold myself up.

It is so nice to have his help. The alternative is to get on my hands and knees and crawl until I find something to use to pull myself up.

I still had trouble with Buster laying down and staying down at the patio table as we were eating. I still haven't called and talked to the trainer about this.

I am waiting until my brain can handle that sort of thing.

Now, I need to pick one other person and memorize her name.

I also am not sure which child goes with which adult yet.

I am not ready for the classroom yet.

But, I was able to stay tuned in enough to keep my eye on the kids in the pool for awhile.

They all did fine. There was just one moment when I thought I might need to jump in and help someone out...ha...I wonder if I could have done this?

I tried several times to jump off the diving board. I finally figured out I could do it if I just got the end of the board and stepped off.

The brain was not working well enough to jump up and out and in. I still need to keep things simply.

Getting on the board was a problem too although it was very low.

I also had the pressure in my ears but this time it was from trying to dive to the bottom of the deep end. It is the same pressure I feel at times when it is a normal day and I am not in high altitude or diving in the deep waters.

It really felt good to move the body in the water. I know it was good for the body too.

I am thinking I will ask Dr. H if I can't wait a couple of months before starting the PIC line for the rocephin again.

[This message has been edited by kam (edited 04 June 2005).]
 

I noticed that you have been having a problem with nausea & vomiting again. I have a huge problem with nausea, and had tried a couple of meds to no avail. Finally I was given a prescription for Zofran and it really helps. It may be worth a try if you have not tried it yet.

I hope you feel better soon.

D. Lee Muse
 

Thanks. I am too low functioning right now to know what to do with the info you gave me.

I really don't want to take more meds, but need to do something.

I over did it yesterday and was not able to move until about noon today. I slept off and on in the recliner. Carpenters were even pounding wooden boards by my head outside and I was too out of it to care or wake up.

Received a note on the door from management regarding checking the apartments tomorrow for cleaness.

My housekeeper was supposed to come yesterday and didn't show. I called again today and was told she had been out of town the past two days.

It is so discouraging not being able to take care of things myself and not having reliable good help.

I think if I just rest more today, I will have a different outlook tomorrow and hopefully be able to do a few things.

I tried to do the laundry while she was here. It was frustrating because it took so much out of me to do so little.

I used the power chair to get to the laundry room, but the multitasking and movement to sort the clothes, put them in the washer and dryer and get them out is still a problem.

The laundry is on my bed and I don't know when I will be able to fold it, put it away, and make the bed.

But, the housekeeper is coming Monday so if I am not able to take care of these things this weekend it will be taken care of then.

I reclined from 1:00 pm until 5 pm yesterday. A friend from where I use to work called and invited me to a retirement dinner for two of the teachers.

She would pick me up, we would then go to the train station an hour away and meet others, ride the train into Fresno and then eat a restaurant across the street from the train station.

I left at 5 pm and didn't get home until midnight.

But, I did fairly well. I had to leave the bar area while we were waiting for them to set the room up at the restaurant. The noise and heat was too much.

And I had to leave the dining room area for a short time and go into a quiet room and regroup as my body was beginning to shut down.

But, I was able to be upright the whole time. Getting up the steps to the second floor of the train was difficult due to weakness but I made it.

I also had the shortness of breath as if I was climbing a mountain with any movement after dinner.

But, all in all...it was great to be out and fake normal. I also was able to listen to the talkative Father sitting across from me at dinner time and when we were waiting for the train. Learned he has been in 3 Who's Who's book and is not only an ordained Father, but a psychiatrist and many other things. He has 8 degrees and was shot 4 times while in the Viet Nam War. I assume that was all at one time.

I wasn't able to take in a lot of what he said but got the main picture.

They also had a picture of Mooney Falls and Havasupi Falls in the Grand Canyon at the restaurant. I had hiked both falls and hope to go back some day.

It was a Basque Restaurant. Great choice. The food was brought out in large bowls and we served ourselves the side dishes which were excellent. We all order main dishes and were served those individually.

The train ride was a joint adventure so the cost was $5.00 round trip. Amazing. Also an enjoyable way to travel and visit with co workers if you have the ability. I just waited until they came to visit with me and did my best at faking normal.

The teachers are so isolated in the classrooms each day, it was a good way to get us all together to visit.

The only thing about the retirement party is that I would have liked someone to have given a little bit of history about the two that were retiring. I know they have done a lot at work. it would have been nice to give them some recognition.

It also would have been nice to know what their plans were for retirement.

The one lady retiring started work the same time I did. We had interview appointments back to back. I recall thinking that if I was doing the hiring I would hire her while I sat and talked to her. I was glad when I heard she had been hired too.

I learned another teacher has been to Australia 4 times since the last time I talked with her. She just came back from a trip and is taking off again.

It was nice to not have all my energy and strength go towards just being there.

I also don't feel like a truck ran me over this morning as I would have before. I think the stamina is increasing....I know the stamina is increasing.
 

I just wave. I still don't have a clue who they are or what their names are.

At the retirement dinner, I would not be able to recall names 90% of the time. I just said the lady in pink or the man with the cowboy hat, etc.

It is more than just the name recall. It is recalling more about that person and making the connection as to what contact I have had in the past with them.

I know I know them...but it is all what I see in front of me right now.

I would not have recognized the head of the department if she had not stopped by to say hi and ask how I was doing. This is not good.

One of the teachers is calling me the silver fox now due to the change in my hair color.
 

I did take Buster out to the fenced in area to let him run. Someone opened both gates while I was there and I didn't notice it until it was time to go. Glad Buster didn't notice it either.

I also did my 5 minute walk as I was feeling stronger this am. Wondering if that is why I lost my strength. Hopefully it will turn up again.

Have any of you seen it? Perhaps it went out the gate.
 

I learned that it is not OK for me to be there. They were very pleasant about it.

What bothered me is that I tried to fake normal while talking with them.

But, whatever it is that told me before whether I was talking to a city police officer, CHP or Sheriff went out the door.

I also recall looking at what was written on his shirt but the processing was gone or something.

I know that a spark went off, but my mind couldn't compute. He pointed out that it said K-9 on his shirt. I wasn't able to read his name right about the K-9 either. I could see it so it was not a vision thing....I think it was a processing thing.

Since I worked with several different law enforcement agencies in the past and automatically checked name and department, it really bothered me that I wasn't able to take this information in this time.

I also am having difficulty with Buster. He does his task work fine if he doesn't have the vest or gentle lead on.
 

I tried to find my P.J.'s tonight and noticed that the last housekeeper who was here had mixed my sweaters, P.J's, sweatshirts, tops, and other things all together. I need to seperate things again so it will be easier to get something off the shelves instead of having to go through a large stack with a bottom here and a top there.

Frustrating day. Little things became big obstacles. An uphill day in high altitude.

Glad a friend came over and took me out for dinner. All I had to do was sit there and eat it. Didn't have to figure out what to eat, prepare it, pay for it..which is a tough process for me when the mind is not on line, or put things away afterwards.

The less the mind has to deal with the better.
 

Wow never really sat here and read this topic before and here i was wondering how you were doing... duh just read the post.

Your story is amazing. I think of you everytime i change an ink cart. LOL
I actually packaged up 8 more to mail in on Monday can you tell i am a printing fool???

I sure hope you start feeling better and that Buster starts behaving for you.

Hugs
Starr

 

I need to go back through these posts and write down days like this to get an idea of how often this happens.

These days are the most difficult for me.

I am wondering if the glasses of strawberry lemonade and 1/2 of fish hamburger I had yesterday have something to do with it. In other words...sugar and white flour.

Starr,

I will respond to your message when I am doing better.
 

My response was thank you but I am in no hurray. I reflected on the many times I stood in grocery store lines in a big hurry before lyme.

I also was aware that I needed to just sit and not move in the air conditioned store for a while. I needed to recharge because it had taken a lot out of me to pick up a few items. I could not have done it without the power chair.

And I will most likely not move for a couple of hours now in order to build my strength back up to take Buster out later this evening for his exercise and change of scenery.

LOL. I too think I can do the going down part. But, I think if they still have burro's, I will ride one of them out.

On the other hand...if we could get a cat in front of us for Buster to chase...we might have a chance!
 

Thanks for continuing to send those cartridges in. This is a good thing you do you printing fool.

Katherine

PS I have a couple myself I need to get off in the mail.
 

I was sad because it was the first night of farmers market and I didn't have what it took by the time I got there to get my money out and make a decision on which fruit I wanted to purchase.

But, after I sat for a while and recovered from getting there, I was able to take the task on if I wished.

I also was able to get a few things off of the bookshelves so there would be less clutter.

I wasn't able to do the clay detox today. Didn't have what it took to do that today..perhaps tomorrow.

There were other things I wanted to do also. Hopefully, I will be able to take care of some of these things tomorrow.

I also was able to work on the budget for July and record a few checks in the ledger.

Small steps.
 

Rest of the evening will probably go towards eating cold leftovers and getting Buster out to exercise.
 

Now, I am hoping the day is done and I can recline and veg until bed time.
 

He seems to be satisfied to rest right now and I am hoping he will continue to rest until morning.
 

So, I just took Buster out on foot. I had it in my mind that I could be on my feet an hour. Wrong. Again, 20 minutes was my limit.

Trouble shooting the obstacles for the batteries are like climbing Mt. Everest again. I don't know how they make life and death decisions on that mountain with so little oxygen going to the brain.

My brain was really low functioning this am and keep changing channels on me. I called the number on the power chair and found out that number was no longer in service.

I called a local battery place and thought I had hit pay dirt. The owner came out and checked the batteries and the battery charger. It is the batteries. They are 4 and a half years old. He said batteries usually last 3 years.

He checked the cost and called me back. It seems reasonable. The only problem is I do not have the funds.

I called MediCal and found out I need to find a company that accepts MediCAl, get the code, call MediCal back with the code and then I will know if MediCAl will pay for it or not.

I also ran out of Biaxin. I called the pharmacy to see if they can mail it to me since the pharmacy is an hour away. Left message.

No return call.

I may be able to use a Medical Transport System but need to be in my power chair in order to ride it to the pharmacy.

I need a break from asking for help. It is getting to me. I miss my independence.
 

I left a message on my LLMD's phone requesting them to fax a prescription to the medical supply place.

I also asked the medical supply place if they would work with the local battery place. I sure hope so.If not, I will have the obstacle of getting the batteries.
 

Carol
 

I have been going down hill. It seems that it is difficult to know what causes what with this since I have yet to have one variable change at a time.

This time it was the lack of biaxin and the lack of having my power chair to move my body.

The good news is that I have been able to be on my feet twice a day to take Buster out to toilet. We are out for very short times but at least I am out. It seems 20 minutes is my limit still of being on my feet.

I am waking up with the head stuff again too. Hopefully this will go away once I start the Biaxin again.

And the body is so uncomfortable it is tough to do anything but hold down the lounge chair for too many hours a day. I wonder if I can get a job testing lounge chairs.

I also have times when the body goes numb in different areas as I recline in the chair.

I heard from a teacher who will start traveling next week. I look forward to the time I can hit the road.

The only thing that is stopping me now is the lack of funds.
 

Not able to walk Buster this am so I took him next door to a fenced in area that I have been told not to go into because it is Chevron property.

It has a bench I can lay down on. I laid down on it while Buster roamed. Don't like the place because I can't keep an eye on Buster and he gets into too many things there.

But, the brain and limbs were not working well enough to walk him for that short time to toilet this am.

Hopefully, the power chair batteries and meds will be resolved today.

If they have not mailed the meds, a friend said she was heading into the next town to pick up some money from a bank so she would take me in to pick up meds.

I also left message with Medical Supply place to see if they have received doctor's note for batteries and if it looks like MediCAl will be paying for it.

If not, I ran into another guy with a scooter in town and he is getting a new scooter. He said the batteries were just replaced in his scooter but that didn't solve the problem so I could have his batteries if they are the right ones.

He will be getting his new scooter July 6th. First I need to see if his batteries are even the right ones. Then, I need to figure out how I am going to survive without a power chair until then.

Brain is in a fog and body doesn't want to be upright. Time to be a couch potato again. DARN DARN DARN

I can't find several of my used check books anywhere.

So, I used the banks web site to record the checks onto my ledger. I am missing about 4 checks.

But, so far...I haven't been able to find any record that I did pay those bills although my mind recalls paying them.

This means that the funds will come out of next months food budget leaving me very short for money for food unless I can think of something else.

Stress Stress Stress

It had been a long time since I had recorded my checks. I noticed that in March, I was writing May on my checks. I also noticed that the check book numbers were all screwed up. I use to be able to do a good job of this.

Before lyme, I keep a record of my income and expenses in Quicken and tried to set up a budget every month and stay between the lines.

After lyme, I was doing good if I could just recall how to write a check...or get the limbs and brain to work together to write a check. Many times I needed someone else to write it for me and I would just try to sign it. I still have to do this if I have over done it.

I also need to get the medical receipts together for the apartment manager. If they accept it...my rent will go down. But, don't have what it takes to do this right now.

And it would help if I could get the CALPERS stuff followed up on...but don't have what it would take to do this too.

I have sent an email to the church asking for help. But, haven't heard yet.

I have had 3 people stop by and ask if they could help with anything but they did not have the skills to do this type of work.

I should have least asked them to water the plants out front that are dying.

Perhaps this afternoon my mind and body will be working well enough for me to pick one of the above and work on it.

If I could get my income increased it would relieve some of this stress.
 

This sounds so difficult, my heart goes out to you. You helped me when I first came here almost 2 years ago, now it is time to repay the favor. My husband's lyme is only affecting the household from the stand point of things falling down around us. Fortunately, my Lyme ( I am sure from him, STD) doesn't impair me like his neuro does. I do all the banking, bill paying etc. and am fortunate that this is my field of work and can still do it.

The point of this long story is that there is a program here where Elder Services will match a person with a volunteer "money manager" This person will come and assist the impaired to pay bills, reconcile bank statements etc to help and impaired person continue to live independently. Would you be able to check to see if such a program exists in your area? This may be the answer to getting your documentation together. I hope to become one one day when we are well again. Also, I am sure you have tried, but how about legal aid services to get stuff together for CALPERS?

Secondly, if you e-mail me privately with your insurance information, I will gladly call Express scripts to see if they take your insurance. Then I will ask them to contact you by phone or e-mail, whichever you prefer to set up services.

I also have some other med ideas that I may be able to help with.

We are on opposite coasts so it may take a bit of time for me to get the calls made and a response back to you, but I will.
Hang in there, happy to help from the other coast!
Wizard

[This message has been edited by WIZARD (edited 24 June 2005).]
 

Good idea about contacts for helping with the paper work. I did get the number to an organization called Independent Living. I will contact them to see if they have someone in this area that might be able to help me keep on top of the checking account, etc.

I did call the drug company you suggested and it is like the one I had when I had Blue Cross. But, the idea of looking into pharmacies via mail is a good one.

I did get the meds today which is a big relief.

I had a pretty good day today. I was able to walk (not normally) into town today. I went into the local coffee shop and promptly feel asleep for an hour as I laid down in one of the booths. I know the owners and it was not a busy time. HA! I had an appointment in town. Town is about a 20 minute walk. I then had a meeting for about 20 minutes and then walked back home.

In the evening a friend took Buster and I to the fenced in area so he could get his exercise.

I walked back with him. That went well too. Although I had to talk my legs back home. I sang an old song I use to hear many moons ago when my husband was in boot camp. I started out with left, right, left, right...they say in the army the chicken is mighty fine...but one jumped on the table and started marking time...I wish I could recall the rest of the verses. They work well for keeping the legs going and taking our mind off of how the body is feeling.

I also rode into the next town today with another teacher in town. She talked all the way there and all the way back...approximately 2 hours total. It was good conversation, but my mind still has difficulty processing and taking things in.

Later, I tried to go to a meeting for a Bible Study on the Purpose DRiven Life.

My mind was like a pressure cooker. I just couldn't not take anything more in and I wanted to punch the speakers lights out.

I tried just closing my eyes and breathing deeply, but that didn't help either.

I then stepped outside to the quiet and felt like crying. It was such a relief. The quiet was just what I needed. Strange.

I guess I used up my brain listening to the other person talk.

I also lost vision at the meeting as far as looking at the paragraphs in the chapter we were studying.

I think I have had enough. I don't think I will go to anymore meetings. I will just finish the book at home.

Still waiting to see if the batteries for the power chair will be approved by insurance. The medical supply place is still waiting to get a prescription from my lyme doc.

I noticed that he will be in the office next week.

A friend has offered to purchase the batteries for me but I am not sure what to do about that at this time. I will sleep on it tonight.

I just wish I knew for sure that it is worth the wait. It may be that the insurance company will not approve them.

It also may be that the other guys batteries will not work in my power chair.

I would like to know if it is worth the wait.

I contacted Canine Support TEams again about the Change of Life Grant. I tried to call the numbers on the paper work that I had but could not get through on any of them. This is not good.

I sent an email again. I know they received it because I checked the box to notify me when it is picked up.

The people who loaned me the money to go to the two week training or not pressuring me about paying them back. I just don't like the fact that it is taking so long to get the check.

Hopefully I will be able to deal with the CALPERS stuff tomorrow.

I was up and down all night with Buster. He had the ****s.

I have noticed in the past that when I do not get my sleep at night I seem to be able to move my body better in the morning. Strange.
 

I was up and down all night with Buster. He had the ****s.

I have noticed in the past that when I do not get my sleep at night I seem to be able to move my body better in the morning. Strange.
 

Lately, I have been trying to figure out how to get the brain to work well enough to get some of this long over do paper work done.

I started clearing the dining table of all the paper work, etc. on it. I could not finish it. The cogs in the brain were the biggest problem.

So, I decided to take a break and clear my head. I went to the frig to get a slice of lemon to put in my water. Getting the water was not a problem but when I opened the frig I had to stand there for a while before the head cleared enough to recall that I was there to get a slice of lemon for the water. The body also was affected by the brain. The brain had to clear before the arm could move.

Why? How do I fix this. I can hear by lyme doc now...when the lyme clears up this will clear up.
 

The lights, sound, heat, etc seemed to shut my body to a point that I couldn't even think. Again, when I got outside to the quiet I started to feel human again and the stuff going on in the head and with the ears lightened up.

Strange.

I was trying to be normal today and I guess I over did it.

I had a great deal of difficulty moving my legs and body to get out of there and into the truck.

From the truck to my home, I walked sideways and it worked much better than walking regularly. This is something that has been the same since this hit.
 

I sure will be glad when the power chair is up and running again.

I was pleasantly surprised that I was able to make it to the park again with Buster this morning. I think I was on my feet from 20 to 45 min. I looked at my watch but couldn't recall what time it was when I left the house. I will write it down next time.

I let Buster off leash again at the park. We did OK until he saw some people and ran to greet them. They were all the way on the other side of the park. And then, a dog in a fenced in yard across the street caught his attention and he ran across the street. No, he did not stop and look for cars first.

So, I am back to needing to get to a fenced in area to exercise him. That is tricky because I don't think my feet will get me to the closest fenced in area.

I came home and rested and then made breakfast. I fixed scrambled eggs with spinach, onion, cheese, garlic and tomatoes. IT was great. I can't recall when I have been able to do this. The multitasking thing you know gets in the way most of the time and I have to keep things to just one step.

But, I am wiped out now. I will be holding down the camp chair recliner in hopes of recharging so I can get Buster out this evening somehow to exercise.

The house keeper told me the vacuum is not working. She said that she saw a vacuum at Sears for $30.

I hope to be able to see for myself how the vacuum is doing. I know I tried it the other day to clean up the power chair and it didn't work. The bag had a hole in it though and I replaced it. I haven't tried it since.

I am all ready in a negative balance on my checking account which will come out of next month's budget.

Not sure how all of this is going to work. With all the hair from Buster...I really need to get a vacuum that works.

I wonder how sweeping the carpet would work??

Spending money on food is more important.

But, it was really tough on my body and mind. A friend walked by while I was laying on the bench. She went back home and got her car and drove Buster and I back.

So, our outing was cut short but I don't know how long I could have laid on that hard bench feeling so sick.

The plan was to lay there an hour in order to get the strength to walk back.

I also was not able to do anything after taking Buster to the park and fixing breakfast.

I slept until 2pm and then off and on the rest of the day. Took Buster out for very short walks a couple of times so he could toilet.

I think I will have my power chair back on Friday. It is so sad to be back to having such a rough time with this. The power chair made such a big difference.
 

I have not been able to read in the am and before bedtime for quite some time now. Hopefully, that will come back too.

It looks like I might have the batteries for my power chair at the end of this week. I sure hope so.

That power chair has made such a big difference in my life. It is something that I can do....cruise every now and then and get out and about.

I am able to do this almost every day when I have it to move my body for two short periods of time and sometimes longer.

Without it, I am pretty much housebound again and even at that not able to sit upright or move about in the house.

Hopefully, I will get the check in the mail for the change of life grant with Canine Support Team too.

I would like to be able to pay back those who helped.

THE WALK WAS ABOUT 6 SHORT BLOCKS THIS TIME. NOT BAD. MY COGNITIVE AND LARGE MOTOR SKILLS WERE WORKING. THIS IS GOOD AND A TREAT.

I STAYED DOWN ALL DAY TODAY WITH THE EXCEPTION OF TAKING BUSTER OUT IN THE AM AND PM.

I AM WONDERING HOW TO HANDLE THIS WEEK AND WHEN MY POWER CHAIR GETS BACK ON LINE.

I AM THINKING THAT I MIGHT TRY WALKING IN THE EVENING IF I HAVE THE RESERVES TO DO SO.

AND USING THE POWER CHAIR THE REST OF THE TIME.

I WOULD LIKE TO BE ABLE TO BE ABLE TO BE ON MY FEET FOR LONGER PERIODS OF TIME.

IT TOOK ABOUT A HALF AN HOUR TO GET THERE. REST 1/2 HOUR. AND THEN WALK BACK 1/2 HOUR.

THAT WORKED THIS TIME. CAN'T KNOW IF IT WILL WORK NEXT TIME.
 

I laid down and sat up off and on while I was there for about an hour.

Coming back was difficult. Hard to describe. Perhaps as if I was climbing up hill with a heavy back pack and breathing heavily.

Buster got a good work out. He had a little friend to play with.

Still not sure how to do this being on my feet thing without over doing it so I am down for a long time.
 

It feels good to be on my feet but I don't know if I can do this all week.

I also need to get paper work done around the house which requires sitting up and thinking.

It will be a tricky week. I will be glad when the power chair is moving my body again and I can do more.

I finally received part of the change of life grant. The hotel bill. But, I have not received transportation costs, food costs and some of the dog supplies.
 

It was tough getting him. I made it though. I was feeling pretty spiffy when I first got there because I have been able to be on my feet for 20 min. rest and then be on them for 20 more min. twice a day for the past two days. But, I am not feeling very spiffy right now.

That old stiffness and rigormortus feeling hsa kicked in.

I had to walk myself through the cup of tea. OK...get glass...good...find tea bag...good, put tea bag in glass...good, pour water over tea...this is not good...too difficult to fix a spot of tea this morning.

OK. Rest and then try breakfast.
 

At least he was able to toilet.

I took him out this am but it was tough. I keep feeling I am on the verge of tears. It is do to it better so difficult to move the body and the brain not working well.

Back to the camp recliner and vegging in front of the TV.

I am hoping the power chair batteries will be here Friday. I just hope I don't cry from relief when the guy brings them. That is so silly. I don't think very many people would understand why a grown woman is crying over batteries for her power chair.

I hope I am able to follow up on the batteries to day, CALPERS and some other things. But, if it is like the rest of the week I will not be able to.

One more day and then I can get some food in here. This is good.
 

Limbs and brain connection is very weak. Need to keep it to liquids...digestive system is too weak to take down solids.

It has been a long time since I have had these symptoms. I am hoping they will go away once I am using the power chair to move my body again.

The tears are back too.

Wanted to address an envelope to mail a letter to family and couldn't do it.

What I did do this morning was walk Buster to the school yard, lay down on the bench walk a few blocks to the local coffee shop, listen to a local pastor talk about mission trip to Mexico, and walk back home with Buster.

I also answered one email message and wrote a letter to the family. Then, the body quit.

Rested...typed this entry...back to resting...everything is shutting down again.
 

I wonder if that has something to do with not being able to read, focus, balance the checkbook or write the checks down, etc or other paper work.

When the pressure lets up, I will try to do some paper work and see how it goes.
 

I expect I will be fine once I am able to use the power chair again.

I did have a good thing happen this morning. I ran into the guy with the two labs.

He drove Buster and I across town to the school yard where he teaches. Buster got to run and play with the other dogs.

I got to talk to a fellow teacher.

He has a garden project at school. He told me to stop by and help myself once I get the power chair going. Schools out so the veggies are there to pick. I love picking veggies from a garden.

Well. Time to get back in the camp recliner and veg. Not my style but a neccessity (sp?) for now.

BUT, THERE IS ALSO THE PROBLEM OF WEAKNESS.