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.

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.

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).]

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 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!

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--

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 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.

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.

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!!

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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)

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.

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.

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.

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?

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.

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

A tough way to conserve energy, but it works.

Something I was not able to do yesterday.