(Although I had lyme symptoms off and on for many years earlier when life was under more stress than usual...but none stopped me in my tracks like this time.)

Finally dx with lyme Dec. 2002 due to positive IgG WB with IgeneX and symptoms.

Saw LLMD in Jan. Received prescription for drugs.

Started taking K drug today for 5 days on acidic stomach followed by a hot bath.

Doc also noticed I had a yeast problem. Not to excited about this since I am aware ABX creates a yeast problem.

LLMD suggested I keep appointment with Sansum Clinic in Santa Barbara to make sure nothing else was going on.

3 days of testing and doctors visit at Samsun clinic. Internist suggested I start ABX for lyme on the 3rd day of visit.

Will see if there is anything else going on this Tuesday after I talk to neuro for test results on the work that was sent out...

including lyme blood test to qlab and lumbar puncture for MS panel and lyme panel and blood work for other autoimmune disorders.

I felt like I had a 50,000 mile check up while at Samsun and my confidence in the medical field was renewed...

Samsun staff and doctors very professional and can do attitude among all involved.

Next step in my lyme treatment is two other types of ABX (amox and metron), garlic, acidophilus, and yogurt.

Will also finish taking supplements that I have around the house that are good for lyme also.

And researching more on lyme.

Prayers needed for work. I have been given a heads up for a lay off possibly coming at workn with the State of CA

I have been surprised that work has keep me on the payroll for the past 16 months.

I have mixed feelings about possibly being laid off.

As others have experienced when you have your world turned upside down..you really go through a... once I am well do I really want to return to the life I had and is it time to do things differently.

All I could come up with at this point is...I need to get well and return to work before I make this decision and then see what I think.

I will keep you posted on my journey with lyme treatment.

It includes getting SSDI while I have been unable to work...this is still pending due to lack of dx until now.

Also what neuro at Samsun clinic has to say. A local pharmacist recommended at go to Samsun clinic earlier in my journey as he said my symptoms sounded like a friend of his who was dx with lyme at Samsun.

I had HMO at the time and although I fought the good fight...I didn't know the tools to winning until it was too late.

Glad I have PPO now for a few months.

LLMD said I may be able to return to work in 4 to 5 months. I am hoping for sooner of course..but time will tell.

Note: I should include that I am typing this as I am lying down on my back. The computer is next to my bed and the kepboard is on my lap.

I always wanted a lap top..HA!

I also am only able to get up to fix 3 meals a day and if I am lucky take a shower and get dressed.

I will be out of breath and feel like I am climbing a mountain with a backpack during the activity of taking a shower and getting dressed.

I am not in pain unless I push it too far.

I need to really pace myself each day or I pay for it days afterwards. I have been down for the past 3 days because of the 3 days at Samsun Clinic. I gradually starting to feel human again and hoping to be able to go to church tomorrow.

I am posting this to help myself as well as others.

16 months of being housebound with phyical and financial challenges require stepping outside of the box so to speak.

I lived from pay check to paycheck and was just beginning to put a little money away before this hit.

Although most of the medical field has been negative, the people have been amazing...

with help from taking me to the doctors to household chores to getting me out of the house just for the day every now and then.

I have had times when I only had celery stick and peanut butter to eat...which was really rather good...only to have someone show up with groceries or gift certificates for food.

It is amazing how ones attitude is improved with fresh veggies and other foods in the house!

Along with the knowledge that others care.

My goal: To heal financially and physically.

It sounds like your lyme treatment is moving along. This is good news.

I'm so sorry about the possible layoff, this can very difficult. Sending you prayers.

It sounds like you have a very positive attitude though. It must be those fresh veggies!!

Please do keep us posted on how you are doing and take care of yourself.

You said,
"My goal: To heal financially and physically."

What a wonderful goal, good for you!

Hugs,
Beverly

------------------
Sailing away....
 

I think its wonderful that you have a venue to share your saga! Expressing the struggle may help you cope with it, escecially now that you are on the path of treatment!

As I said earlier in the saturday night chat - you are one day closer!!!!! AWESOME

I hope that you keep us all posted on your progess.... I will pray for your goals of healing financially and physically!

Best wishes,
Cayce
 

I hadn't received any mail from you for a while...so...I'm glad to see your e-mail.

And the great treatment you received at the clinic.

Rock the house.

By the way...what is K?

Trout Scout
 

That is to clear the yeast/fungus that the LLMD doc said I had.

I don't know if it is the Keto drug, the Lumbar puncture or the hot baths that I have been taking twice a day as recommended by the LLMD after taking the KETO drug, but I am not doing to well.

I am fine if I am lying down. This is good.

When I try to get up and move about...my head doesn't do so well. (Lumbar Puncture?)

I know in the past that hot baths would do me in so it could also be the hot baths slowing me down to a stop.

I will be glad when I stop taking the Keto..drug and stop the hot baths.

Hoover Round called today regarding getting an electric scooter to help me get out and about.

I sure hope the insurance approves one. I have needed one for 16 months now.

They can not use the lyme doc but need a primary doc..so I am looking for a primary doc.

I also need to turn my car in. The lease is up on the 9th, but insurance expires on the 27th of this month.

This will be the first time since 1967 that I have not had wheels.

I will be glad when I am able to work again so I can have wheels again.

I also hope that Toyota is reasonable about the fees I will need to pay at the end of the lease.

I am 2,000 miles over the agreed mileage..but this would have been much worse if I hadn't been sick the past 16 months and not able to be out and about.

I hope you all are doing well today and counting your blessings.

I found out I will have the money to pay utilities and rent...this is a relief and a good thing.

Who would have thought I could have survived being housebound for this long?

A friend from church came over and brought dinner, did the dishes and sprayed for ants yesterday.

This is good. Oh yes. Her son emptied the water crock as it was full of ants.

Guess I need to put a "no swimming sign" on my water container.

When I look back to when I first posted on lymenet, I am so thankful for those who helped me see over the big hills I was facing at that time...Kent, troutscout and others.

I just received an e-mail from Trent and Troutscout so I have recall on them. The others were important too, but live in the moment with the dreaded leaded duck disease (Finally named Lyme)

I call the neuro at Samsun Clinic tomorrow to get the test results of lumbar puncture (lyme and MS panel done) possibly blood test by qlab for lyme, possibly cocci blood test results and blood test results for immune disorders.

[This message has been edited by kam (edited 20 January 2003).]
 

:-)
 

Started Amox and metron today along with acidoph.

I had a good day. First day in 6 that I have been able to get out and about...even if it was short out and about trips.

Still waiting for neuro from Samsun clinic to call.

Still waiting for garlic from hepapro.

No pain/pressure in the head today. I am so glad.

Well, time to take the reclining position. OK. I am reclining now.

I will recline for a while and then try to get up and some things around the house such as take out the trash, do the dishes, get groceries, put the clothes away, fix the dryer, pay the bills, balance the checkbook, pick up in the front room, unpack from the Samsun trip.

OK There I go thinking I am normal again. HA!

We'll see how it goes today. I am concerned about getting these things done before the ABX kick in.

I have heard that I should expect this to get worse before I get better while on the ABX.

Count my blessings: I finally have dx after 16 months, I have insurance to help pay for the meds, I have a nice, quiet, peaceful place to live, I have food and clothes. I have a computer that is on line. HA!

I am rich!
 

Glad you are on the good stuff.

Things will "feel" worse before they feel better....so, stick in there.

Trout Scout
 

Symptoms: Dry cough, head cold, difficulty with mobility and cognitive skills.

Weakness in body. OK if I am lying down.

Tingling in hands for a few seconds today.

Ringing in left ear off and on..mostly on.

Difficulty with vision...OK if I close my eyes and rest. Then able to read for a short time.

Shortness of breath with physical fatigue.

Physcially fatigue extremely quickly as if climbing a mountain in high altitude.

Need to lie down to use computer.

Physically fatigue too quickly if I try to sit upright. The body will just not hold itself upright.

(I have been lying on the couch or bed for the past 7 days..with the exception of a few short activities as probably mentioned above.)

It is normal for me to be able to do things for a short time after reclining for several days. Or for a few hours in the morning after staying down most of the afternoon, evening, and having a good nights sleep.

Yammering.

Today was a good day. (But, I have been known to have good days in the past 16 months without meds.)

I was able to walk the two short blocks to the coffee shop this am. I also was able to take a shower, fix breakfast and get dressed.

Yes. I had to pace myself. And yes, I had to lie down while I was at the coffee shop.

But, I did regain my strength and I was able to walk back home...slowly..but I did it.

I also was able to put a load of laundry in, take out the recycles and pick up a little in the front room. I'm on a roll here.

Yes. IT was piece work. Do a little. Rest a lot. Do a little more. But, it feels so good to be able to do these things.

I also drove the 20-30 minutes to work and back in order to pick up some paper work. Yes. I reclined the seat there and back, but I made it. (Only hit a few cows, but...who let the cows out!)

Wanted to stop and visit with people at work, but knew I wouldn't be able to walk out to the car or drive home if I used my energy for visiting.

Then I came home and rested. Got back up and was able to walk the short block to the bank and back.

I am so much happier when I am able to get out and about and do things around the house.

I tend to over do it and then need to stay down. Pacing myself is still a puzzle to me.

I just do what I can when I can.

The neuro from Samsun called. He said my spinal fluid was fine regarding...no MS.

He didn't mention what the outcome was for lyme or cocci.

He is going to send me a plan for physical therapy to keep my muscles from atrophy, make an appt. with an infectious disease person, and a psych. (I told him my cognitive skills slowed way down with this along with my motor skills.)

He said no to the electric scooter. But, that is OK. If I am going to be back to normal in a few months, I don't need it.

I asked the neuro if it was only lyme that I am battling? He said I needed to see the infectious disease person and told me how great he is and what his credentials are.

Of course, my mind recalled everything he said..NOT! I even had a pen and paper ready.

The brain I had before lyme would have taken it all down. The brain I have now just looks for the main points.

When I was walking back from the bank, my feet felt like they had been out in the snow.

It wasn't that they were really cold. It was as if they had gone from really cold to no feeling at all. Strange, but consisitant with what I have coined this...The Dreaded Leaded Duck Disease.

I also left a letter to the head of the department at work giving her an update.

I sure hope they continue to hold my job open for me.

Did I tell you, today was a good day as far as being able to do a little more than usual!

[This message has been edited by kam (edited 24 January 2003).]

[This message has been edited by kam (edited 24 January 2003).]
 

had to read it twice more before I got that she Sprayed For Ants

Seriously, I don't usually hang aroung General so much, but I will now because I really want to follow your story....

By the way, Mepron did wonders for me. (And yes the ringing ear and muscle twitches are pretty normal) I was bit in April and have been pretty much all A-Ok since October.

I am doing a "mop-up" course of Flagyl which I hope will be it for the big boy antibiotics (only 10 days left- but who's counting? ha ha)

Keep these epistles coming KAM!

I'm glad that you had a "better" day - and were able to get out of the house. Please keep us posted as to your progress -

I have had a relatively bad week, so I haven't been able to make it here much... but I have been thinking about you, wondering how your first few days were going.. and was very happy to find this thread here with your updates

You continue to be in my prayers,
Cayce
 

Forget the shower today...just get dressed.

Walked to the coffee shop. Laid down. Walked back. That was my big adventure.

Tried to put clothes away...got 3 items in drawers...exhausted...laid down and rested...hung up a few more shirts...laid down again....put 3 more items in drawers.

Is this really lyme? Read some posts..especially the one about sick and tired of being sick and tired...OK...this could really be lyme.

Joined in on Saturday Night Lyme Chat.

Will try to put some more clothes away before bedtime.

Still have head cold. Had trouble swallowing last night. I am OK if I keep lots of water down me.

This too shall pass.
 

Hmm. Good day. I got out of the house 3 times.

Walked the two blocks to the coffee shop twice and walked the block to the post office.

A friend helped unpack some more books. I only lasted about 10 minutes and then had to recline.

She then did the dishes while I was trying to recoup.

And I finally got the checks recorded in the ledger and two bills paid.

I needed to do more, but I still am not multitasking. It was really too much to get two bills paid. One would have been better. So bizarre. I will be glad when my multitasking skills are back.

Stayed in the clothes I slept in last night so I had more energy for other things today.

Took a hot bath in the evening. That will be about it. I will not be up to much else tonight.

Oh Yes. I can breath now. I woke up in the middle of the night realising I could breath through my nose again. This is good.

The brain fog is just the meds now...the cold is gone. Hurray!

Still trying to choose a primary doc. Decision making is so slow now a days.

Or is it because it is so difficult to find a doctor and staff that do their job?

Looking for one who is trained in eastern medicine and western medicine...looks like I will need to travel.

All in all. It was a good day. I just need to remember to move very slowly when I am trying to walk or do something.

But, at least I am moving.

I am not feeling so well...kind of like I have the flu or something.

This too shall pass!

I did walk to the coffee shop again today and back.

Mobility seems to be improving, but it is too soon to say.

I have had times in the past when I thought I was getting better only to have to hit the couch again and wait it out.

(This was before meds. IT will be interesting to see how things go now that I am on meds.)

Physical Therapy did not go well. I was only able to do about 4 exercises on my back for 5 times. The two with multimovement were very difficult.

It seems there is something going on in the brain. It can only do one thing at a time.

My hope is that it will reprogram.

I am so weak. I need to stop typing now because the body is just not cooperating.

I sure wish I understood what is going on and what to do.

The CD I am playing is helping with the relaxation. It is a nature CD.

[This message has been edited by kam (edited 28 January 2003).]
 

I am wondering if this is my imagination or if this is going to stay, but it seems my head is clearer now and mobility is different.

It is only 6 am in the morning so we shall see how things go.

Yesterday was a good day. I drove the hour and a half to the nearest acupuncturist.

I had more stamina yesterday than I have had in a a long time. It was dusk and I walked to the post office and back..only 2 blocks.

But it is highly unusual for my body to still be going at that time of the day after being on the road for most of the day.

It is highly unusual for me to drive myself anywhere!

The hour I was reclining on the acupuncturists table helped me to recharge so I could drive myself back.

Thoughts of returning into the main stream of life are flooding my head.

As Ashley Brilliant said, "I try to take one day at a time, but several days are attacking me at once."

My mind is filled with anxious thoughts about paying the medical deductible of $500 as soon as possible, paying the 20% of all the lab work that was done at Sansum Clinic, turning the car in next week, paying the fees at the end of the car lease, paying the people back who have loaned me the money the past 16 months to keep a roof over my head, having transportation to and from work once I return to work, etc. etc.

Where oh where am I going to come up with all of this money? The trees outside look like my financial resources at this time...pretty bare.

I am thinking as if I am well for the first time in many months.

I am not going to the computer to try and research what is going on and what to do about it.

I think I just need to get up and try to take a shower, get dressed, eat breakfast and go for a walk around the block.

Then we will see how spiffy I feel. HA! Wouldn't it be great if I was still feeling spiffy.

Hope to see some of you at the Saturday Night Lyme Chat tonight.

PS. My LLMD called while I was out yesterday. He left some possible appointment times for next month.

Then he said something I am still am in shock with: call me if you have any questions or just want to chat.

After 16 months of being conditioned otherwise with doctors, I am having trouble accepting "normal".

I also found out Blue Cross only credited me $68 out of the $210 I paid toward medical costs.

This certainly does not make sense.

I have had medical insurance for years. But only went to the doc for once a year check ups.

I had no idea what the medical field and insurance companies were really like until the past 16 months.

I certainly have mixed feelings about all of this.

_____________________________________________

Well, I got up out of bed and made breakfast. That exhausted me. I went back to bed and slept until lunch time. This is unusual for me, but usual when I have had a good day the day before.

The good news is that I was able to sit at the table and eat breakfast and to my to do list while I was eating.

I have not been multi-tasked very often since this hit.

My body did feel like it was filled with lead while I tried to stand, sit or walk.

I am fine if I am lying down.

I received my 10 day shut off notice on the city utilities today. Hopefully, that will all work out too. I have heard that there is a center here I can take the bill too for help. I have called them once before, but the money came through and I didn't need them.

I am going to try and take a shower and get dressed next...after lunch that is.

I heard about the Shuttle. Ouch!

[This message has been edited by kam (edited 01 February 2003).]
 

Cool it. I know that's easier said than done, but you will only wear yourself out. So take it one step at a time. (When possible- Ha ha ) Really- go easy on yourself. It will pay off in the long run.

What did the accupuncturist do for you?
 

I don't know if it is my imagination or if I am getting stronger.

It is little things...like being able to walk in and out of the grocery store yesterday to pick up a couple of things instead of using the electric cart, being able to take a shower or bath almost every day again, being able to sit at the table to eat because I am not too tired to sit after fixing me something to eat.

I know that this thing cycles and I have had these times in the past. So, I don't know if it is part of the cycle or ABX or the trip to the acupuncturist and the herbs she gave me to build up strength or all of the above.

I just think something is going on here and that time will tell.

My cognitive skills seem to be slowly improving also. I did go to the grocery store yesterday for a specific reason and forgot all about that reason until I got back home yesterday.

And I needed help with filling out some forms yesterday because it took all I had just to be sitting in the chair at the am meeting. But, I was sitting in the chair.

And by the afternoon, I was sitting up and reading my book on Lyme. I have only been able to read a book once during the past 16 months and it was very difficult because of the blurred vision. This time, it was as it use to be before lyme.

A friend brought over some money to pay one month of the two months I am behind on the city utility bills so I will be able to keep the heat and water on in the house. This is good.

Another friend brought over some fresh veggies and fruits. This is good.

Now, I just need to come up with the money to pay for the appointment with the Lyme doctor at the end of the month.

Another friend is sending me $50 so that is a start.

Lymie Pie: My eye sight is still not that great. I have looked several times to see about "praying for the ants" in case I needed to make a correction and still can't find it. HA!

By the way, the aunts haven't been around lately!

And it seems the acupuncturist was a pharmacist and a MD before she became an acupuncturist and herbalist.

She put together what looked like tree bark and some other things and told me to make a tea out of eat and drink it 2 times a day.

She said that eastern medicine goes about treating lyme differently than western medicine.

She is trying to build my immune system up.

Since the insurance will cover 60% of the bill, it is worth a try at this point.

A friend of mine was not getting better from valley fever so she started to go to her.

My friend is slowly getting better now.

It is amazing how health affects your attitude also. If you are not feeling well, you tend to look at things from a negative view point. Once you start feeling better, things start looking a lot better.

I have really seen this with my friend and co worker.
 

Nice to hear you are reading and stuff. I remember the fall of 2001 when I was herxing on Levoquin for a sinus infx....pre-dx....wow, I couldn't read or pay attention to anything.

Very good news.

I am happy you have such good friends to stop by and take care of you.

My prayers on your recovery. PS..it is my experience that just before and immediately after a herx...I feel the best.

Trout Scout
 

My LLMD suggested I have the primary doctor handle any of the paper work that I need done.

When I saw the doctor, he said what can I tell you about lyme. I told him that I would be surprised if he could tell me much about lyme at all since most doctors do not know much about it.

He said that he went to an Ivy League School on the East Coast so he knew about lyme. He said New York (I believe) has the most incidences of lyme and then California was next. ( So far so good.)

Then he wanted to know what my LLMD had recommended for treatment and how long I was going to be on the abx because he didn't want me to be over treated.

He said I just needed 4 weeks of abx to shut things down.

I responded with there seems to be controversy on that subject between Yale and the doctors who are actually treating patients with lyme.

I then took a copy of my test results from IgeneX. He commented that Igenex seemed to contradict itself because I was negative on one test and positive on another.

When I have asked my LLMD to fill out some paper work I have needed, he told me to have my primary doctor do this.

When I ask the primary doctor to fill out the paper work that I need, he said to have the LLMD do this

Hopefully, the LLMD doctor will reconsider next time I see him. I walked out of there thinking that these doctors have got to do more than just shake peoples hands and get paid. I must really be missing something here.

The good I was able to drive to and from the doctor's office. It was a 2-hour drive one way.

I am having to stay down now, but my hope is that I will be able to get back up and do a few more things today after I recover.

I also must admit that I was so physically fatigued when I saw the doc that just being there was a success.

I would also like to add that I didn't see daffodils and lilacs but, I did see some small purple wild flowers along side the road and my favorite trees were blossoming with the pink flowers I usually see on the west coast this time of the year.

That was worth the trip in itself!

Next time, I hope I am strong enough to stop by and tell the ocean hello, smell the ocean breeze, hear the roar of the waves and the sound of the seagulls!
 

It is day 19..2 1/2 week mark. I had difficulty breathing through my nose last night while I was trying to go to sleep, have a little sore throat like feeling in my throat and feel like I am coming down with the cold/flu.

I mention this because this is what happened right before I started herxing last time and right before I came down with all of this 16 months ago.

I guess time will time.

It has been really nice the past week. I have been able to sit upright. I am so glad. The world looks so different when you can stand or sit upright.

I wasn't concerned about getting in the car and driving somewhere...although I still paced myself in that department and made having the strength to get home top priority.

I am planning on writing a letter to my attorney this afternoon to see what he thinks about closing out the workmen's comp case and focusing on getting SSDI.

I know that one of my students came down with the bulleye rash right before I did, but I did not document my "bite" when I got it.

And the lyme doc said I could have gotten it from work, from the trip I had just taken to the mountains, from home.

So, I am guessing getting workmen's comp is out of picture at this time.

I wonder whatever happened to the student. I know I sent him to medical and that was the last I saw him.

It was the end of the term and time for new students.

I have got to get back to work and quit talking to this computer. HA! At least it is better than the dishes. :-)

I do want you to know I do have people stopping by to see how I am doing every now and then and I do get out.

It is just not the same as being in a classroom with lots of interaction.

Which is good at this time. I would be in overload. I am still learning to drive the car and listen to music again. That multitasking stuff is coming back but I need to be patient.

HA! Doorbell.
 

I kinda feel like you are leading the way for me, since I'm 2 weeks behind you - I know that we are all different, but its comforting knowing that there is someone one step ahead of me!

Keep us posted
Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

- Luciano De Cresenzo -
 

But, my body is shutting down again.

It certainly has been nice to be a little bit "normal" lately.

And I am glad that I did get food in the house yesterday. So, I guess I just need to wait this thing out. All else will need to wait. Breath in, breath out. Move slow. Stay down.
 

Wait a minute this is day 23...ok 3 weeks...3 times 7 = 21

I don't know about the rest of you but I am really having problems with numbers.

I don't know if it is the Questran Light Powder I took yesterday or it is just time to herx.

But, my body is shutting down again.

It certainly has been nice to be a little bit "normal" lately.

And I am glad that I did get food in the house yesterday. So, I guess I just need to wait this thing out. All else will need to wait. Breath in, breath out. Move slow. Stay down.

Toyota offered to extend the lease. I took it. I was feeling so well, I was hoping to return to work next month.

Now, that I am back not feeling well...I am still hoping to return to work next month.

I only went to the acupuncturist/herbalist/md once. It is not in the budget at this time even if the insurance will possibly pay 40% of it.

I will no longer have insurance unless I am able to return to work in March.

I am hoping this too shall pass!

[This message has been edited by kam (edited 19 October 2003).]
 

My thoughts and prayers continue to be with you.

I'm glad that you were able to at least temporarily resolve your car dilema. I know that it is not 'resolved'(and that there are many loose ends, especially concerning money) but you are not feeling the pressure of making that decision, and the less stress on you, the more energy your body has to dedicate to healing itself.

I'm sorry that your feeling worse - please keep us updated, ok?

Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

- Luciano De Cresenzo -
 

I continue to be very limited in what I can do today. Lying on my back reading things on the computer, watching a few TV shows while laying on the couch, etc.

It is back to being a challenge just to fix something to eat again.

I fixed a smoothy to drink for lunch and now can't recall where I put it! I know it is around here somewhere! I have lost it twice and found it once.

These times makes one appreciate the other times so much more.

How are the rest of you doing?
 

Still very limited on what I can do. Climbing Mt. Everest is out for right now.

Walking slowly from the bed to the couch is the big adventure for now. Sitting up is out.

Will I be ok enough to make it to church tomorrow? It will be my 4th day tomorrow. Last time the herxing just lasted 3 days.

I received a letter in the mail from social security denying my claim for disability on the grounds that all the reports they received in August and September of last year say I am as healthy as a horse.

Called and left message with attorney to see what the next step is.

Sent application off yesterday to see about getting help with utiities. I sure hope that comes through before the utilities are turned off.

Printed out taxes yesterday but don't have what it take to get that off in the mail right now..maybe later.

Did taxes on line on the 9th. Boy, things sure move slowly when you have lyme.

It took me 3 times and several days to figure out what I needed to do next on the step by step H&R Block sight. Cognitive skills are just not there right now.

It is a good thing I could just close the program down and go back to it at another time.

It is good my computer is next to my bed so I can lay down and do the work.

Can any of you relate to this?

[This message has been edited by kam (edited 15 February 2003).]
 

The moon...hasn't affected me...so far...this time around.

I just went thru a herx week...Sucked.

I can relate to everything you said.

trout Scout

Keep up the great attitude.

[This message has been edited by troutscout (edited 15 February 2003).]
 

It is 6 days now. The pain/pressure in the eye is back. I am thankful that the excedrin helped with that.

Not tired, but keeping eyes open is tough and of course any movement.

I tried to get out of the house twice today. It was not a good idea although it seems very nice out.

I did get the taxes in the mail box by walking the block to the post office.

I wasn't sure I was going to make it back and there wasn't anyplace to lie down.

Remind me not to try that again until the system is working better.

I am trying not to let fear over take me here. The fear of not having a car, a place to live, my health returning.

Think positive. This too shall pass. It will be all right.

I also am feeling anger. Why is it that we do not have home health care at times like this?

Count my blessings instead...a lady from church brought over some chicken soup and I have had that the past few days to eat.

This is good...because fixing myself something at this point is not realistic.

I have a roof over my head, a vehicle, the utilities are still on, food in the frig, clothes to wear.

Take it a day at a time. Do not worry about tomorrow.

Breath in...breath out. Do want you can for now.

Sent e-mail to Lyme Disease Foundation regarding what the stats were for being cured.

They responded with there are no stats.

I responded with what are the stats for those who have been able to return to work.

They responded in large font...THERE ARE NO STATS!

Very discouraging.

I tried to call the Lyme Disease Foundations Hot Line...it just kept ringing...no answer.

Talked to attorney's office about what the next step is towards SSDI since I received the denial.

They said it doesn't look like I have a case since all my medical records show that I am fine.

I asked them about the records that show I have lyme.

They said they would get back to me in 2 hours..that was 8 hours ago.

I guess I better give them another call to see what happened with that.

This too shall pass!
 

I am fine as long as I stay lying down and don't talk.

Activity is very limited. I am not a happy camper.

I did lie on my back and type out two letters to send along with the booklet on lyme from the Lyme Disease Association.

I am going to try and get them to the two doctors offices I saw when this first hit.
 

------------------
oops!
Lymetutu

 

You are in my thoughts and prayers every day.
I know that it is difficult to stay in the moment and take all of this one day at a time, but it seems like you are focusing on that - which is very good!

Have you heard back from the attorney yet?

This attorney is for your application and denial of social security disability, I know... but have you checked out SSI, supplemental income, at either state level or through social security? Have you applied for food stamps etc?

Just curious... I don't know much about these programs at all, but it couldn't hurt. Other than its more work for you to do, when your not able to do anything - its so rediculous how this system of ours works!

My prayers are with you
Wishing you health and hope!
Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

- Luciano De Cresenzo -
 

I am wondering out loud here...has anyone thought of contacting the ACLU about the infringement of our rights as sufferers from a disability, and the fact that EVERYONE fights us....American with Disabilities Act has restrictions on crap like this.

I must say...Kam, 3 months ago I thought I wouldn't be able to work for a year or two.

Guess who is working again...albeit part-time....BUT......I am a couple of years ahead of myself.

SO....keep up the attitude.

I'm praying for you and my dear friend ArtistDi as the two of you as individuals are really hitting things hard right now.

PLEASE remember...you can temporarily stop abx for a day...to recover from a herxheimer..you DO NOT want to push a herx. They CAN and WILL cause permanent damage, if not death, in some cases.

Kent

Trout Scout
 

The herxing has finally stopped. I know because I just touched my head and it is still there.

In fact, my whole body is still intack. This is good.

I am up and about now..but very slowly and down more than I am up..but that is OK.

I even went for a walk around the block this am.

And did you know there is blue carpet under all those clothes that were on my bedroom floor. HA!

I even took a bath and washed up for Saturday Night Lyme Tonight. HA!

Big social event at this time. HA!

I wrote a letter to the attorney and sent it along with the booklet on lyme I got from the Lyme Disease Association.

I got a Birthday Card from his office signed by all of the staff.

I think that is good PR. I have only been in the office once in the past year or so.

Heard from lyme doctor. He still wants me to continue on the amox. This means I stop the mentron (flagl) when I run out.

Received $35 from SBC for changing back to their telephone service. This will help to pay the telephone bill for this month. This is good and a relief.

That was a long 8-9 days. I am sure glad it is over with.
 

Glad to see that you made it through.

I'm feeling sad that I missed my big social event of the week last night - Sat Night Lyme Chat... I wasn't feeling up to it.

Keep up the good attitude - you are very inspirational to me Kam!

Wishing you health and hope
Cayce
 

I missed you at the Saturday Night Lyme Chat.

I hope you are feeling better soon too.

What week are you on with the abx?

My hope is that he will release me to go back to work. I am concerned about how I am going to pay the bills if he doesn't release me to go back to work.

I also am concerned about how I am going to be stronger enough to work if he does.

Catch 22. HA!

I am feeling pretty spiffy this am, but I haven't gotten out of bed yet. HA!

I will see how I am doing when I try to take a shower, get dressed and eat breakfast.

Then hit the road for the 4-5 hour drive. The skies look blue right now. This is good.
 

Anxious to hear how your second appt went!

I'm sure your exhausted, but please let us know when your up to it.

I'll send you an email to fill you in on my progress...

Wishing you health and hope
Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

- Luciano De Cresenzo -
 

I got home, checked the mail and found...24 hour shut off notice, we are going to come get your car if no payment by...., cancelation of auto insurance if no payment by...medical bills from Sansum Clinic (over $12,000 so far) and then the Landlord knocking at the door to pick up the rent.

I had the money for rent. This is good. And I think I can make payments on the utility bill if I can figure out where I will get the money to make payments.

I have been so fortunate. I have been on my own for many years and have always been able to pay the bills. I do not ever recall receiving shut off notices or cancelation notices until now.

I did receive notice that I will have medical coverage until March 24th. This is good. I thought it was going to end in Feb.

I just need to come up with the deductible and my percentage of the bill so they will do their part.

The doc said I would probably be able to return to work in May. This is good.

That means I will get a pay check in June.

RE: Doctors appointment....

I woke up at 6:30 am. Left the house at 9 am. Arrived at the doctors office around 2:00. Laid down in the waiting room to recharge my batteries.

I was feeling pretty spiffy that I had been able to drive there myself. Getting out of the car and walking was starting to get rough.

Felt better after I laid down for an hour or so.

Got back up and was doing fairly well for a short time with the doc and then body started to shut down. ( I sure wish I had some type of gage to give me a warning when this is going to happen.)

TAlked myself to my friends house close by and stayed down the rest of the night and into part of the next day.

Drove myself home and have been down every since.

The good news is that I did drive myself. The hills were green. The skies were blue with white cumulus clouds. The orchards were blossoming with pink flowers.

That in itself was good for the soul.

I will be calling Igenex Lab on Monday to get the kit to test for co-infections.

And going to the pharmacy to fill Doxy, diflucan, and amox prescriptions.

Also need to keep up Qestron and physical therapy, hot baths or some thing to sweat out the toxins.

Cried on the way back. You just don't know what is going to hit you. Dr. H had mentioned that he was doing a lot better.

He has lyme also.

He said he had been running in the sun lately.

I don't know why that brought tears to my eyes. I just don't realize how tough this condition is at times.

Something like running in the sun is such a good thing to be able to do. I am so glad he is able to do this again.

It is one of the first things that I noticed when this hit. I couldn't run and the heat really bothered me.

He was not only able to run, but he was able to run in the sun. Can you imagine that!
 

I have been down for almost 7 days now. I am not sure why.

I sure hope it lets up soon.

I am still waiting for pharmacy to fill diflucan prescription. It has been 4 days now of waiting.

Head is not clear today I am going to try and get as much water as possible down to see if that helps.
 

Trout

Have you tried guzzling some mineral water?
 

It is reassuring to hear from you.

OK. I will quit fighting this and conserve my energy.

Makes sense.

And I will try some mineral water, but I am not much on stuff that has carbonation in it.

Hopefully I can find some without.

HOw are you doing?
 

I went with a friend to look at campers. She has a nice, comfortable pick up truck so all I had to do was sit back and relax and watch the scenery.

I did get out and look at a few the trailers she is considering..but I moved slowly and sat often.

Today I was able to drive myself to church an hour away and back. My body is telling me to stay on my back the rest of the day.

I have a workmen's comp hearing 2 hours away tomorrow.

I hope to get the diflucan tomorrow..it has been a week now of waiting.

And I am getting more white spots..doc says that is a type of fungus and the diflucan will help.

I go to Samsun clinic Tuesday. I got the test results from Quest Lab and unilab that they did for lyme. Negative.

I also received the test kit to test for co -infections from Igenex yesterday.

I think I will see about having Samsun's lab draw the blood while I am down there.

And I have a cat scan of the chest and abdomen locally for UCSF Wednesday. They are still considering Myasthenia Gravis or some other neuro muscular condition. I told them I had lyme, but they still want to rule this out.

Since I have been waiting over a year for someone to do the testing to rule out all these conditions that were mentioned, it is good to finally have it done.

Changing to a PPO has really helped open up some more doors.

I broke down and got a pill box. I am glad I did. I have the pills all set up for the next week 4 times a day.

Now, I will know if I have already taken the pills or not. Or if I have taken them. HA!

And when I am traveling on the road, I can just take the row with that day in it with me.

Adjusting...I am adjusting...it is a slow process.

 

Thanks for the idea of the pill box
Now I just have to remember to get one the next time I get out of the house - we'll see if that happens

Lymie brained me didn't think about it - but I am always trying to remember what I've taken, or if I took this or that!

The only problem is my inhaler won't fit into one of those boxes - HA!

Glad you were able to get out and about today Relax and rest up for your next two days, sounds like alot happening at the beginning of the week!

Thinking about you!
Health and Hope
Cayce
 

I am hoping I am stronger today..I know I am smelling stronger. HA!

I had two cat scans yesterday locally. UCSF is still checking into other reasons for my symptoms besides lyme...but my bet is all will come out fine and lyme will be the bottom line.

I think they are looking into Myasthenia Gravis as a possible reason for my symptoms.

AFter a year and a half, it will be good to finally have all these conditions ruled out.

I also have an appt. for a SEP and VEP at UCSF the end of this month. This has been going on since November.

I had the lab work for co-infections done and sent off yesterday to Igenex lab.

A friend sent me $100 for my birthday so that helped with that expense.

Paying bills is very difficult at this point. I really need to pray about which things to spend the money on and when.

So far, all has worked out. I am in awe of God's grace and mercy and so thankful!

I also heard I was approved for help with the city utilities. My hope is that the money will come soon. It will help to pay for the past two months owed.

And I found out I will have medical insurance until April(I was orignally todl it would cancel in FEb) Since I hope to start back to work in May, this looks good too.

I sure miss my B-12 tablets. I really felt like they were helping with strength and cognitive skills.

I will be glad when I can order some more along with the vitamin C and mult vitamins and minerals.

Having a balanced life is my goal now and when I am back in the main stream of life.

I also came up with enough money to keep the car insurance from being canceled at this time.

Money is still a big concern. I am going to be a health coach for Trivita when I have the funds to do this.

I hope it will help to supplement my income now and after I return to work.

If it just helps to pay for the supplements, I will be thankful.

And I like the idea of helping others improve their health after experiencing this condition.

And I hope to be able to get out and go for a short walk today.

 

The insurance company gave me and the pharmacist several different answers as to why I could not get the pills.

They were still saying no when the pharmacist ran a lower dosage and less pills through the system and it worked!

I am interested in seeing how the diflucan affects me. Since, I think there is a strong arguement for valley fever being part of the problem too or some other fungus at work. Too many coworkers were coming down sick with the same symptoms.
 

No. No. No. It is supposed to be Good Morning Lord.

It has been 6 days since I had my almost normal day...drove to Santa Barbara.

I am not sure what is going on. But, I am not able to do much and I don't like it.

I know others are going through much worse and I will get through this.

The thought crossed my mind to put a gone fishing sign on my front door and hibernate for a week.

But, I know that I will not do that. I will get up and try to do what I can each day.

It seems the only thing I am able to do each day is eat 3 meals, take my meds, get the garlic down me 2 times a day, eat the parsley, and communicate through the keyboard while lying in bed.

Not only is my body not cooperating on most things, but my mind isn't either.

I am on my 7th week I believe of abx and my 4th day of diflucan.

The dishes are high, the trash is overflowing, the debts are high, I can't see the carpet in my bedroom floor because the clothes are covering it and the coffee table is covered with papers and other papers I know where their at one time I can't find.

The kitchen floor and the carpets have only been vacuumed or mopped a handful of times in the past year a half.

I know some people live like this all the time. I do not. I prefer to have things clean and organized and will be glad when they are that way again.

I guess you could say I am feeling trapped.

Mostly I don't like the fogginess of my mind.

OK Now that I have looked at the negatives, things don't look so bad at all.

There is so much more to be thankful for. Where is that thankful switch. I need to find it and turn that other switch off.

This too shall pass.

Today was a good day. I was able to be upright and get a few things done. I now have clean dishes and am working on catching up with the laundry.

Tomorrow I drive to Sansum clinic. It will probably be at least a 10 hour day.

I hope that I am not down for 7 days afterwards like I was last time I made the trip.

Still having trouble gettng the diflucan from the insurance company.

The amazing thing is that I did it. I drove myself and sat up for the most of the time.

I was there to see a pysch.

I had difficulty with my eyes on the way back and stopped at a coworkers house around dusk. They drove me the rest of the way home.

I also had to crawl to the bathroom and then had my arms fold under me when I tried to crawl into bed.

It is Saturday now. I stayed down all of yesterday and it looks like I will need to stay down again today. My arms still are so weak they hurt.

I am not sure if the trip was worth it yet. I will know more once I go back for the test results.

I no longer have any diflucan. The insurance says they have not heard from the doc regarding the form they need in order to ship me the diflucan.

I will e-mail the doc again.

I have an appoitment with a toxicologist with workmen's comp in Visalia next week and SEP/VEP testing in SF through their MS Center.

This should just about do it for the box of tools the medical field has.

The only thing that hasn't been down that was suggested when this first began is a MRI of the lumbar spine.

My plan is to continue with the abx and the LLMD and hopefully get back to work by May.

The utilities, car payment, auto insurance, and medical bills are all behind and overwhelming.

It certainly would help if workmen's comp would be approved and I started to receive the checks.

I am thankful for all that God has provided this past year and a half....most amazing.

But, spirits are low at this time. I know they will improve once I am able to get up and about again.

Patience. This too shall pass. And there are those who are going through so much more.
 

The good news is that I drove myself to UCSF Medical Center and back. I went up the night before.

I had the SEP/VEP that was recommended in Oct. 2001 and finally being followed through on.

The bad news is that I am still trying to recover from the trip.

I want to jump ship. I want to get off of this old, lady, debilitated body, poor cruise ship and get on the young, vibrant, healthy, prosperous cruise ship.

You say I missed the boat...too late..lyme or no lyme...dang!

OK. How about if I leave the word young out.
 

I am starting to feel human again after 3 or 4 weeks of little to no mobility or cognitive skills interspursed with 3 intermittant days of being able to travel and be almost normal. I think that is what put me down for 7 days each time afterwards...one day of going to the docs 3 or 4 hours away.

I stopped taking the drugs and eating one day last week. I just had water and carrot juice. The next two days I only had 1/2 the drugs and 1/2 the meals for the day. Not intentionally...it just worked out that way.

Just very low functioning.

I am hopefully back on track now. I am going to focus on getting at least 2 scoops of Questron down each day if not 3 along with the garlic, meds, meals, parsley, carrot juice and water.

I have even made a chart to help me because some days I don't know what I have done and what I haven't done. And I am learning I need to check it off as I do things because if I wait, I can't recall what I did.

The bills look like they are going to be paid this month. Amazing. What a relief.

My hope is that I will be back to work in May. Then I will just need to get through May. IN June I will start to have a paycheck coming in again.

AT this point, my health is not improved enough to return to work, but I want to give it a try.

Being at home the past year and a half certainly has not improved my health.

I have not gone to physical therapy in at least 3 weeks because I was not able to physically.

I may start up again this week. I go two days a week for one hour and do very little compared to how active I was before.

But, it feels good just to move the body a little. I do not think it is good to not move the body.
 

I have not gone to physical therapy yet.

I did go to UCSF neuormuscular center. I was lost for an hour and a half in the city of SF before I found the parking lot. Walked the two blocks to the office and was short of breath and completely drained.

Doc did not have the test results for cat scan, VEP/SEP. Wants to do an EMG. And concerned that I had not seen a good pulmonary specialists.

I got lost on the way out of SF...ended up staying in a tent cabin in Big Basin Redwood State Park. It was tough to be there and be in so bad of a shape. My mind and body were gone.

I had planned on driving to SF and back in one day, but my mind wouldn't allow it.

Doc. prescribed zoloft. I started taking it Saturday. I have been sleeping around the clock.

Sent email to doc. She said I must be sleep deprived. It is true that I didn't sleep Wednesday and Thursday very well..but I don't know why I am still sleeping around the clock.

Still need to find a primary doc. Insurance is running out end of this month.

Still hope to return to work in May. Not sure who is going to release me to go back to work.

Feel I need an electric scooter and cooling vest in order to get back to work...30 minutes from parking lot to classroom..legs will not get me there at this point.

I am concerned because options are not looking good right now.

Zoloft seems to be numing all feelings at this point. Doc suggested I take the pill at night instead of am so I will try that tonight.
 

I became a Trivita Health Coach. I have 24 customers. It is good to find something that I can do from home and that I believe in.

I just need to lie on my back next to the computer or lie on the couch and make service calls.

I find that on a good day I can do the computer for about 40 minutes. I haven't tried the service calls yet.

I no longer have insurance but I did get the abx refilled before it ran out so it will last me awhile.

I received a notice from the low income apartments in town that they may have an opening. This is good...I think.

I just need an income now. Hopefully Trivita will help with this.

The sublingual B12 seem to be helping with the fatigue more so than the zoloft.

I also started taking Trivita's acidopholus and other supplements in order to build my body back up...they came with the business box.

The zoloft depresses me and I sleep a lot.

The issue of workmen's comp doesn't look like it will be settled until after June.

Who knows how long it will be before I hear from SSDI.

My hope is that I am well and back to work before these issues are settled.

I haven't been able to do the dishes since last Saturday..hopefully, I will be able to do them tomorrow..Saturday and get groceries.
 

I stopped all meds the past 3 days. Only took 1/2 zoloft and one diflucan today.

My latest thinking is that I got valley fever the same time everyone else did at work because of the same bizarre symptoms and also got bit during this time.

Either way, the diflucan will help. It treats valley fever and yeast if that is a problem.

I talked to a representative from the CFS Association and she said I had CFS instead of Lyme.

That is the problem with this. Everyone has their own opinion on what I have.

Only my LLMD has come up with answers as to what to do to get better.

I really don't know what I have been out of it the last two months but I am doing what I can to get a little bit of myself back.

I was able to go to the grocery store yesterday. This is good. I used the electric cart and got quite a bit of stuff because who knows when I will be able to go again.

I no longer have insurance, but I am OK with that for now.

I need to turn the car in. Farmers sent me a cancellation too. I am not sure if it is because of the two tickets or because of the illness but no one seems to want to insure me at this time and I really can't afford it.

The LLMD said he would fill out the paper work to try and help me get an electric scooter but it was too late for the insurance company to process it.

I recieved my health certificate from TriVita. It is a nice one. I hope my body and mind follow suit soon.

I will be looking at the low income housing Thursday.

A Congressman's assistant called today from my email back in Feb. asking for help with getting SSDI.

She said she would look into it.

I was able to borrow enough money to pay rent this month, but that is it. It will be interesting to see how the other bills get paid.

Hopefully TriVita will bring in some income.

It will be good to not have to worry each month how things are going to be paid.

I did walk the block to the post office and back today. This is good. And I did get a shower and get dressed.

I tried to read the printed word, but didn't last long.

I will be glad when I can read the great American Novel again.

I found out I can get credit for my AOL bill today if I take a survey once a week or so. This is good. This will help!

It seems that all wheels turn very slow except the bills. They are coming in faster than I can keep up with them.
 

The church near me had a yard sale Friday and Saturday. They sold some of my things for me.

I needed $308 to move in to the apartments.
I received $208 from the yard sale and a friend brought a card over with $100 in it for Mothers Day.

The church is trying to get people to help me clean, pack, move and have another garage sale this weekend.

I am downsizing. My hope is that this will bring in enough to pay the utilities and some other bills.

Another lady is at the store right now picking me up so groceries.

This is all so humbling and amazing.

As far as my symptoms, my head seems to be a little more clearer.

I still feel like I need an oxygen mask when I try to move or sit for very long.

I am able to do a little, get back down and then do a little more.

It has been a long time since I have had a day when the breathing was not a problem.

Did you know we exhale more toxins out of our bodies through deep breathing than we do through the other end?

(I have been listening to my TriVita tapes.)

So, breath deep at least 5 times a day.

That had to be God.
 

I do believe the hardest part of this is people not understanding.

I don't understand why my body is behaving this way and when it is going to stop or if it is going to stop.

It is odd, but what bothers me the most is that my mouth feels like cotton all the time and my lips are always dry and cracked.

They are fine is I don't move. But, with mobility...the shortness of breath...the dry, cotton mouth, chapped cracked lips come.

Yes. I am drinking lots of water. Yes. I will try to get more down me today. I usually drink 5 of the Danasi Bottles a day.

[This message has been edited by kam (edited 05 May 2003).]
 

Thanks for the reply. I think I will be OK once the move is over and I am settled in.

I certainly will miss my car.

Like you, I haven't worked in over a year and a half.

I have stopped taking the Questron. I had forgotten all about it until you mentioned it.

My LLMD along with other docs wants me to see a pulmonologist because of the difficulty with breathing with mobility.

But, I no longer have insurance. Perhaps workmen's comp will provide one.

I too try to think of others and be greatful this is all that I am going through when things get tough.

But, I had forgotten that. I also try to count my blessings which have been a lot.

I thought I had a pretty good attitude until lately. I started taking an anti depressant and I wonder sometimes if it isn't depressing me.

When I first took it, I sleep around the clock and lost about 2 weeks of my life. I didn't care about anything.

The doc said to give it 6 weeks so I am trying to do that. She also said to cut back on the dosage and I did that.

Did you hear about the guy that had to cut off his arm in order to survive.

I was very thankful that day that I was just dealing with lyme and something else that hasn't been determined yet.

I think it is valley fever.

Well, I have yammered enough. I appreciate your reply. It does get pretty lonely at times.
 

I read your entries and think of what a strong person you are....amazing.

I am so glad God is with you. Your church and its people are wonderful.

People can't cope with this...so, I try to give them a break.

Take Care,

Kent

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

How are you doing? Still working part time?
Still on treatment?

I am glad I am living by myself right now because I find I am less patient with people.

I do try to give them a break. But, I am amazed at all that I could do that I took for granite that others that are well can't do.

Since I have had to rely on others I have really noticed the different abilities with just household chores.

Amazing.

I will be so glad when this move is over.

My LLMD called and he wants me to see a pulmonologist because of the difficulty with breathing.

No insurance right now so that will have to wait. Did I mention this already?
 

The garage sale the church had brought in just what I needed to move into the apartment.

Then they came over hear and sold some more of my things. This brought in what I needed to pay this month's utilities, and possibly the 3 out of town doctors visits that are coming up.

I also sold my car.

And the ladies who did the garage sale also packed up the kitchen, bathroom, bedroom, etc.

Moving day is Monday and Tuesday. Cleaning day possibly Wednesday.

I would have never thought I would have been able to do this. But, one lady has been instrumental in recruiting help and co ordinating everything. She has been great!

My hope is that when I call the Toyota company Monday for the pay off, I will have enough left over for meds....then hopefully..back to work.
 

I am exhausted today...took a long nap.

I wonder if the diflucan helped me function better than normal. I am out of it now.

If this is valley fever too, that would explain why the diflucan helped.

I wasn't able to walk last night for awhile.

And I haven't done much today at all except lie down and eat a little at a time.

I can't seem to eat much in one sitting. Not sure why. If I am just took weak to chew or what.

I just fatigue so quickly. I didn't know eating took so much energy.

I continue to be dehydrated and need to keep water in me all the time.
 

I haven't been able to do that in a year and a half.

I then went for a walk with others. Fell in the street and now have a skinned knee and elbow.

I got up this am to go to the bathroom and fell in between the bed, desk and bike. I sat there for a while waiting for my strength to return so I could get up.

I no longer have a back in my robe. It was torn during the fall. I think my back has a mark on it too.

I have been lying in bed all morning waiting for the strength to get out of bed.

Hunger is getting strong so I think I will be getting up soon. I am glad I had a bottle of water next to the bed.

Although I still am dehydrated even though I have been drinking it.

It was great to have an almost normal day yesterday.

I don't think I will be moving much today. I will be going over to the old place. I am not sure what I will be able to do to clean it. But, I have help.

I still have the dry cough and the lowering of hearing now and then.
 

I received a call from SSDI. I have been approved.

I have an appointment this coming week at their office.

It will not be much, but it is enough at this time.

I did a dance in my head because my body wasn't able when I received the news.

Then called and shared it with my parents of whom I have been borrowing money from to keep a roof over my head.

They were very glad to hear it as it has also made things financially rough on them.

They are living on social security at this time.
 

Maybe you can take a deep breath and have all your energy at the ready for fighting Lyme and Valley Fever.

Ann-OH

I just got back from a church campout in the mountians.

It was great. I was able to go for a few short walks. I was able to see General Sherman's Tree in Grant Grove and walk a short distance around the campground.

I thought it was because I had stopped taking the drugs.

I had weeks of barely being able to feed myself and I was so weak, it had to be liquid...chewing was out.

So, out of desperation, I stopped taking the drugs to see if that would help.

I thought it did for a couple of days...but then on the way down the hill from the mountains, my body shut down on me again.

I have been laying here for several hours trying to get the strength I need to put on a pot of soup to heat up.

This is not good.

The good news is that I will be seeing my LLMD soon and the workmen's comp doc the end of the month.

I am still in the process of trying to find someone to drive me to the docs.

If I get stronger, I will take the train.

Change of subject...

I found out I am receiving SSI instead of SSDI.

It turns out this is could be better because I will have medical soon which includes drugs.

I was told if I didn't receive the card to call. I have called twice now and gotten the same story. "if you don't receive the card next week be sure and call us" It has been 3 weeks now. Hopefully, I will receive it next week.

I need to find a primary doc as my LLMD wants to only be a consulting doc due to the politics of lyme right now.

Change of subject...

I wonder if it is the heat that is causing me to be so weak?

It doesn't make sense because the house is air conditioned.

RE: Mountain TRip.....

Although it was nice to be out and about....I concluded that one needs to be very cautious as to who you go anywhere with at this time.

With me, multitasking can be too much...the curving mountian rodes, the radio or CD music, the road noise, the constant conversation in the vehicle, the eyes being bothered by the light and movement, the ringing in the ears, etc...the body is just not up to par and gets overloaded seeemly so easily...so bizarre.

Plus, It is just impossible for me to sit upright.

I would like to stop this journey now. I would glady give my cross to someone else to bare, but I know that is not how it works.

I know the story of the person who wanted to put down their cross and went into the room to pick up a new one and ended up picking up the same one because it was so much smaller than what others are carrying.

Change of subject:

I received a certified letter from the state of California letting me know that they were going to lay off 15 teachers at my place of employment.

My hope is that this will be determined to be work related and I will not be laid off at this time.

The other person who came down with the same symptoms at work continues to work part time because she is not able to work full time yet.

I goofed. I thought the workmen's comp doc was later.

LLMD said to continue detoxing along with a hot bath every other day with epsom salts.

And to continue building the system up with supplements.

Then I am to start the diflucan (I continue to believe that I contacted valley fever and lyme around the same time)

The diflucan is for valley fever too and it seems when ever I take an antifungal I become stronger.

Then I am to start shots 2 times a week to treat the lyme.

I need to look into a home health nurse.

I also had blood work to check my kidneys and some other testing.

I would need to look at the lab report. I can't recall off of the top of my head.

The doc should get results in 3-5 business days.

I still have not chosen a primary doc or made an appointment with the pulmonologist.

I plan on calling Monday to schedule an appointment.

LLMD said he has been off abx for 3 weeks now. That is encouraging.

I continue to be able to do a little, rest and then do a little more each day until I crash and have to wait it out.

My hair and fingernails are growing. It is unusual for me to have strong, long fingernails.

I am assuming it is the supplements.

Have not heard back from pharmacist regarding prescriptions yet.

A lady from church brought over groceries today, took my laundry home to do, and took a few things to put in storage at her house for me.

I am still trying to organize the new apartment and declutter. I am still not able to walk without stepping over and around things.

I continue to find it difficult to find things.

I will be glad when the place is organized and clean.

I signed the papers from work regarding lay offs.

I beleive I can not be laid off while workmen's comp is pending, but not sure.

Work is laying off 15 teachers.

One is going out on medical retirement in a month or so...the one that came down sick with the same symptoms I did at the same time.

Only she is doing better than I and is able to work part time at this point.

The past few days have been encouraging. I am always more encouraged when I have a little mobility.
 

I heard from the pharmacy today. They are just waiting to hear from the doc to get his license number. It looks good as far as getting the prescription filled.

I also have been able to go swimming a couple of times. It was great. My body felt normal for a short amount of time.

It has been encouraging being off of the abx...more mobility each day.

It also may be because of less stress financially after being approved for SSI.

Still limited on what I can do each day, but usually able to do a little bit.

I am slowly able to get this place clean and organized...a first since I came down with this in Oct. 2001.

Looking into getting on a list or two for an assistant dog, getting a primary doc, getting home health care, getting an electric scooter or wheel chair, getting on a list for low income apartments near parents, paying debts in small payments, getting to a pulmonologist, getting another appointment with workmen's comp doc (still hoping that this will be connected to work some how since so many of us came down sick with similar symptoms the same time), and of course...still fighting the good fight to have my health return.

I seem to have about a couple of hours each day of productivity if I pace myself...work a little, lie down..work a little more...lie down.

I have charged some things to help...a comfort chair so I can sit up more. I can take it with me to the docs, etc so I do not have to lie down in the offices...also charged a laptop table I can use while lying down in bed...still trying to figure out how to get those last two screws in, and I broke down a charged a TV...I guess this means my imaginary friends will be put on the back burning now. HA!

Found out...no food stamps while on SSI. This means I have about $60 for food each month. I hope to increase my customers with TriVita so I can supplement my income and continue to afford the supplements for myself.

I have had more help with getting things organized and clean around here than I had the last 18 months at the old place. This is good.

This also cuts down on the stress.

Planted cacti after loosing other plants to the heat and not being able to water them.

It was the most fun I have had in a long time besides being able to make it to the pool and doing a few laps and being able to make it back.

Also have been able to walk to grocery store twice in the past 2 months...store is very close. Used electric scooter while at store. Sure wish I could bring it home with me...but not sure how to get it back yet.

And rode my bike twice in the past 2 months to the post office....also not far.

Hope to be able to do these things more often in the near future...but the heat shuts my body down.

I feel I improve with supplements. I have noticed this in the past when I have had the opportunity to take them...especially the vitamins and the sublingual B12.

Have had bloating return. I didn't have that while on abx but bloating seems to be related to activity...now activity while on abx.

Still trying to write lyme story for Faces of Lyme and other newsletters.

Still trying to figure out when I was first lymed...difficult to know which symptoms are lyme related or possibly something else.

It sure would explain the bizarre symptoms in the past.
 

This will be the 4th time I have taken an antifungal in the last 21 months. We shall see.

Now, I don't know if it is the diflucan that makes me stronger or if it is because I have been down and not moving.

We'll see how I do off of it.

I am still waiting to get in to see the primary doc...

...to get the bicillin (I have lost track how long I have been waiting...I think the prescription went in on the 23rd of June)

...waiting for home health care

...waiting for a nurse to administer the bicillin

...waiting for a note from my doc for the nurse and for work

...waiting for the workmen's comp doctors appointment

...waiting for SSI to get back to me to let me know what I owe the attorney

...waiting for IRS to send me the forms to make payments on taxes owed

...waiting for the attorney to get the workmen's comp papers to Samsun Clinic

Samsun Clinic called and they want half my income in order to make payments for the bill owed to them.

...waiting to be able to do routine chores around the house and to take a shower

...waiting for the old insurance company to pay $2,000 of the Samsun Clinic bill that they are disputing (Since this took place in April, I don't it is going to be paid)

...waiting to finish getting unpacked

...waiting for the weather to get cooler (it seems this heat really shuts my body down)

...waiting to have Myasthenia Gravis ruled out or confirmed (EMG is in October now)

...waiting to have valley fever ruled out or confirmed (Since this started with a long list of possibilities it is down to two or three now...heavy metal poisoning is part of the picture but not sure what to do about it since spending more money on supplements is out at this time.)

..waiting to be able to make myself some age defying pancakes and some other things I would like to bake or cook.

..waiting to be able to take a shower and get dressed without being totally exhausted and having shortness of breath.

...waiting to get well
 

Yes. I did finally get the bicillin.

I put in a call to my LLMD to see how to administer it.

I am still waiting to see what to do.

When I talked to him at the appointment, he said to see about a home health nurse.

When I called the insurance company they said they needed a note from the doc.

I saw the local primary doc and hoped he would administer it.

He refused.

I am on medical (the insurance you get with SSI) so I am limited right now on who I can see.
 

I had contacted Congressman Dooley's office and they forwarded my message to the assemblyman.

The person that called me knows the head of the medical center locally and is going to contact him.

The plan is to get treated for lyme. I have the bicillin. I just need to administer it or have someone administer it.

My LLMD is 4 or so hours away.

We'll see how it goes. He said it would probably be the end of next week before I hear back from him.

He seemed to know about lyme and said all the doctor needs to do is contact Conn Medical Center for help.

It would just take one phone call and didn't understand why the doc didn't do this.

The call was encouraging.
 

I am assuming it is because the budget was passed for the state.

They are sending me a form to fill out, send to my doc and then back to them.

This is positive and encouraging.

I also heard from work and they received the note from my LLMD.

And my LLMD called. Hopefully, he is sending me the doctors note for the electric scooter, the Student Loan Disability Form(they have losted the ones I sent them and now are charging me interest big time), and applications for an assistant dog.

The local PCP are not willing to help. I am assuming it is because they want to go with CFS instead of lyme although a rheumotologist ruled out CFS/Fibromalgia.

It is difficult to beleive that I have yet to find a good PCP since Oct. 2001.

It looks like I will need to go out of the area...which means I will need to find someone to drive me the hour or so for a PCP.

This condition is difficult enough in itself without having to fight the medical field.

The local PCP said for all he knows IGENEX is a bogus lab on the grounds that he had never heard of it.

I asked him to call or check out their web site and judge for himself. He said anyone could create a web site.

The whole meeting went like this...nothing but obstacles and looking for ways to discredit me as a patient by the doc any time I directed the conversation towards trying to get my health back.

We were not on the same page.

I received a call from the assemblyman's office. They had called the CEO of the local medical center and they referred me to a doc.

I told them I had seen this doc when I first came down with this and on my second visit, he dx me with fibro, gave me a sheet of paper that said to learn to live with it, there was nothing that could be done about it and don't try to collect disability.

When I told the doc I didn't have the symptoms that were listed, he told me I had the fatigue didn't I and walked out of the office.

A nurse then came back in and said the doctor said not to come back for another 3 months or so.

I later saw a rheumotologist who confirmed I did not have fibromalgia, but didn't have a clue as to what I had and asked me to let him know when I find out.

Staying positive with the medical field being so negative is very challenging and difficult to understand.

Still waiting to hear from work regarding income for the past year in order to set the record straight for SSI and start the payments for the attorney.

Still waiting to get the workmen's comp doctors appointment.

And many of the other things I listed above.

Still very low functioining and typing this as I am lying down on my bed next to the computer.
 

I called pharmacy and they replaced the bicillin they gave me ....this time in the original box so I would have the directions.

Now, I am trying to get it together enough to get to the neighbors in order to have her give me the shots...it is probably less than 7 steps to my neighbors...but movement and processing is not on line yet.

It is the old waiting game again before I can eat and dress...in the past, I have waited until about 2 or 3 pm and then been able to dress and function enough for the basics.

The obstacle here is that the neighbor is from Peru and I really have difficulties communicating with her most of the time...partly me..partly her.
 

She then showed up at my house later that day and said something to me as she was leaving with her grand daughter.

I was out of it and missed the message.

I went to her door several times later and received no answer.

I guess she was trying to tell me she would be gone for awhile.

In the meantime, I received the paper work for a home health nurse.

I called my doc and left a message regarding where to fax the paper work to him.

It has been a week and he still has not responded.

He also has not sent me a doctors note so I can get a closer parking space here at the apartments or so I can get an electric scooter in order to get around.

I am discouraged. Not only because I have had little to no mobility for a week but because it is taking so long to get results.

It is difficult enough dealing with this condition.

I tried the third prescription for antidepressants and once again, they seemed to make me worse.

I slept through the night for the first time in a week last night. I am hoping they are out of my system now and things will improve.

I received appointment letters for the local infectious disease doc( an hour or so away) and the pulmonary specialist.

The infectious disease doc appointment is a month away. The pulmonary appointment is in Jan. of next year.

The appointment for testing for MG is in Oct I believe and then who knows when I will get the results.

I still have not heard regarding the appointment for rescheduling the workmens' comp doc.

Neither has the attorney provided the workmen comp papers to Samsun Clinic.

My LLMD wants to be a consulting doc only, but he is the only doc I have at this time that is helping.

The local primary doc said he would not not help but would refer me to the two specialist above.

I know God has provided encouragement and hope all along.

I will be so glad when I am out of this slump I am in right now.

The ability to have mobility followed by days of inmobility really gets to me sometimes.

Most of the time I do OK.

I think it is because of lack of sleep that it is hitting me harder this time.

This too shall pass.
 

I tried to check to see when I was feeling this way last...it looks like the middle of June or was that July.

Either way...not good. Too long between this waxing and waning stuff.

The past two days I have been able to get out of the house for short periods of time.

I am so thankful for the electric scooter in the grocery store and at K-Mart.

I am trying to figure this waxing and waning thing out.

Am I waxing when I am able to get out and about for short periods of time?

And it is waning that happens when I run out of gas while I am out and about and have to beeline home and stay down for several hours before I get up again?

I tried to ride my bike to the local coffee shopt this am. It turned out not to be a good idea.

I wasn't as well as I thought. Good thing the coffee shop has a place I can lie down and regroup before I head home.

It is probably a 5 minute ride to the coffee shop or less.

I still have not started the bicillin...LLMD's office is closed until the 9th...form from home health care needs to be in on the 9th...neighbor has not been home so she can't teach me how to give it to myself...local doc refuses.

I see LLMD soon so I will deal with it then.

Sure hope home health care extends my deadline.

I have been able to keep up with the dishes lately.

A friend made soup for me so I have been eating it for a couple of weeks now.

This has allowed me to use the energy I would use to fix something to eat for dishes.

This almost brought tears to my eyes.

Now, I just need to find someone positive to help out.

It seems I have zero tolerance for negativity right now.

The other person that came down sick the same time I did called to tell me a local man died. When they did the autopsy, they found out it was for valley fever. He was not being treated for valley fever.

Once again, I would like to be confident that I am not fighting valley fever here too since so many of us at work came down sick at the same time with the same symptoms.

Only one was dx with valley fever...three were hospitalized with pneumonia which is a valley fever symptom.

I called the valley fever center in Arizona and made an appointment, but getting there is going to be challenging financially and physically.
 

I had an appointment with the infectious disease doc.

I asked him to show me how to give myself the bicillin shots.

HE refused. Said people have heart problems that were treated with abx for lyme.

Said there isn't any lyme in this area.

Said there are false positives on lyme tests.

Said, I most likely have CFS and that all he could do was give me sympathy.

He made copies of the large stack of medical tests I have already had.

Said he wanted to do his own testing...so I had blood work for cocci, lyme and a general panel again.

When friend asked why I have the low temps, he said it could be thyroid problems.

My temp was 96 when I was at his office.

Bottom line...I guess it is time to give the bicillin shots to myself some how some way.

But, first I want to make sure I have food in the house in case I start the herxing so bad again that I am not able to do much at all.

The good news is that it is cooler here today. And that I got to get out for a couple of days.

A friend came and took me to the mountains.

My hope is that this doc would work with my lyme doc. I still need to find a doc who takes MediCal and is lyme literate.
 

But, the body and mind are not doing very well now. I hope to recharge...regroup, etc.

I have doctors appointment with ID to get test results and to see what his plan of attack is Monday.

Sure hope person who said she would take me to docs an hour or so away follows through.

Sure miss being independent.

Also have appointment at UCSF Medical Center Thursday. Not sure how or if I am going to be able to make that one.

Will call number today to see about obtaining an electric scooter again.

Parents sent money for food. I have all ready spent it. It has been great to eat well this week. $100 does not go far around here. I just purchased chicken, fresh veggies and soy milk.

Samsun Clinic sent a letter telling me they were sending my account to collections. I have been paying $25 a month on it.

Need to call them this week to see if they will not send me to collections. Not sure what that means credit wise..but it can't be good.

He told me test results were fine for cocci, lyme and CBC.

I wasn't expecting much from him. So, wasn't too disappointed that he didn't have a clue as to what to do about my condition.

He did give me a note for an electric scooter. Now, I just need to get the paper work going for MediCAl.

He said to be careful because their were a lot of quacks out there saying they could treat my condition.

I also asked him for a prescription for a cruise to Alaska too.

He said he would if it would cure me!

AFter I left, I thought I should have asked him for a prescription for a Harley instead of an electric scooter. Smile.

Talked to Hoover Round. She said that they need to doc to fill out more papers in order to the get the scooter and depending on what the doc writes depend on if the insurance will approve.

Since, the doc doesn't have a clue as to how this is to live with...I don't think he is the one to have fill out the papers.

The docs just see me for a few minutes in their office. I have yet to find one that will go for a 10 minute walk with me so they can see how difficult it is to get out and about.
 

I was told the test is frequently done wrong so they wanted to do their own.

Myasthenia Gravis Foundation and others with MG say like lyme...test results can be negative and you can still have MG.

The best test is the tensilon test or to take the drugs to see if they help.

I am not ready to be a lab rat at this point.

UCSF's EMG was also OK.

A fellow teacher paid for the train ticket and the hotel. I had a rough day getting there, but did better on the way back.

It felt good to be out and about. All I needed to do was recline on the train. I can do that.

I interviewed a couple of people for in home health care. One of them will start Monday.

I also am going to give myself the bicillin shot while she is here in case I have any problems.

I sure hope the shots help. I have heard good reports from others regarding bicillin.

I told SF neuro the local docs refused to treat me for lyme or give me the shot.

She said just to use a mirror and make sure I don't hit a blood vessel.

I wonder what I am suppose to do if I hit a blood vessel?

I was able to walk the short distance to church today..sit up a little at church...stand a little, lie down a little and then walk home.

I will most likely need to be in the reclining position the rest of the day..but that is OK.

It was good to get out and about for a short time. The pastor said he would unlock the gate so I can take the short cut next time.
 

I tried to give myself the shot, but found I didn't have the right tools.

I called the pharmacy, they referred me to my local doc, I talked to the head nurse, she would not administer the shot unless the local doc approved, he already has said no, I called the hospital's head nurse and left a message. She is out and will be back tomorrow.

This is so unbelievable and so frustrating.
 

A doc there agreed to have his LVN show me how to give myself the bicillin shots.

All went well. It feels very good to have finally overcome this obstacle.
 

Neither one of us have that nursing skill. HA!

I feel it must be making a difference to have in home health care a couple hours a day for 4 days a week.

I like having the 3 days off because it is exhausting having someone in the house.

I try to do what I can when she is here so we can get some of the paper work etc that needs to be done for my health.

And I have noticed that I don't have to wait until 2 or 3 to eat on those days that I am not able to get up and fix myself something because she is here to do that.

Eating regularly and nutritionally has got to be of a benefit to ones health.

I am so thankful my LLMD filled out the paper work for an in home health provider.

[This message has been edited by kam (edited 01 December 2003).]
 

I was not able to move for at least 3 days. I was able to do a little today. I tried to go out to eat with a friend, but wasn't strong enough to last the whole meal.

It was good to get out though.

I don't know how long I have been on the bicillin shots now. I think I have had about 8 of them.

The doc gave me some suggestions of supplements to take to help with becoming physically fatigued so quickly.

I have misplaced the list and hope to find it soon.

He also wants me to complete some lab work and send it to MDL. The local lab refused to draw the blood stating liability.

Another obstacle. I am heading down south day after tomorrow. I am hoping a lab down there will do the work.

I have been waking up too hot to sleep lately and am very warm right now. I know if I wait it out, my body will go back to normal.

I am still housebound for the most part. It has been 2 years now.

Treatment has been just a few months...I think 3 months at first and then off for 3 months and then on again for about a month or so now.
 

Especially since the teacher who came down sick 2 weeks before I did is now being dx with CFS instead of valley fever as the local docs want to dx me.

She too has not been able to return to work for 2 years full time.

It will take God Almighty to help out here.

I did OK on the Amtrak Train/Bus as I was able to get two seats or the back seat of the bus so I could lie down off and on.

I did notice that the I really have a problem when I get too fatigued. Even lying down doesn't help. The noise, movement, etc...just gets to be too much.

I also have missed my bicillin shot and am waiting until I get strong enough to give it to myself or someone drops over to help me give it to myself.

I don't have much patient right now so I would really rather not deal with calling someone up at this point.

I know I will have a better attitude after I am able to recharge my batteries so to speak.

I didn't even call the in home health care provider to tell her I was back. I need to find someone else as I find myself not looking forward to her arrival.

It has been one year now since I received the test results from Igenex that showed I had lyme disease.

I have taken about 3 months of orals...I think and approximately 10 or 12 bicillin shots.

I take the supplements when I have the funds.

I am still trying to find a way to bring in more income.

I also am still very limited on what I can do each day.

I made a chart to help me follow through on the garlic, parsley, bicillin, green drink, exercise, questran, hot baths with epsom salts, etc.

I think about not taking the meds at times, because I think I was doing better without them....but then decide to continue on the meds.

The main goal continues to be to have my health return and I am functioning so low without the meds that it is not OK with me.

So, I continue with the bicillin shots in hopes that in the long run I will be functioning better.

I think my legs are working better than they were with the shots, but not sure.

I wake up in the middle of the night too hot to sleep. I started taking the thyroid meds lately.

Really dislike drugs, but not sure what else to do at this point with the resources that I have.

Continue to be very thankful for my lyme doc and the support of others with lyme disease.

It is the support of others that help me to continue on the bicillin shots as they report that they feel it is the bicillin shots that helped them get their lives back.

Went on a test drive for Rascal Scooters. They wanted $1500 down and $175 a month for 3 years.

This is not a possibility.

I feel that even if I had the funds to do something like this that I would shop around. This just seems wrong. How can a scooter cost that much.

The thought of being able to get out and about was a strong selling point for me until they told me the cost of doing this.

Still looking for a doc who accepts my insurance and will work with my lyme doc or at least has the same goal I have....get me back on my feet and back to work.

It will be interesting to see where I am 6 months from now. I have begun to learn that this is going to take time and that there are not overnight quick fixes unless it comes from above.

I have given up on putting the book together until I am in better shape.

I continue to want to move out of the area to an area where health care is better and there is more nature...the beach, the mountains....and better transportation and churches.
 

But, sleep has been irregular. Not sure if it is due to thyroid meds. Have yet to check for side effects of meds.

I am still functioning very low.

I have an appointment with a new primary doc out of town today. My hope is that he will work with my lyme doc and have the same goal I have: to get me back on my feet.

I had the lab work done for the CFS panel and bartonella yesterday after trying for over a month to complete this.

Hope to hear from doc soon regarding lab work with MDL and Unilab.

Am making payments to UCSF MEdical center for work done last year when I had Blue Cross.

Also making payments to Samsun Clinic for work done last year with Blue Cross. (Samsun has sent me to collections...the small amount I was paying was not enough in comparison to what I owed)

Blue Cross still refusing to pay a couple of bills from last year.

I have been going in debt each month in order to keep food in the house due to money going towards installment payments. Not good. Trying to find a better way.

I have approximately 15 bicillin shots left.

Have sent email to organization in hopes of getting on the list for a service dog.

Still need a wheel chair or electric power chair or scooter to get around. If it is a wheel chair, need someone to push it for me as arms become weak quickly.

It will be great to be able to get out and about more. I just need to purchase a battery. I am not sure where to get one at this point. I did check the web, but I am sure shipping for something that heavy would be costly.

A friend is going to take me to pick up the chair and another friend is going to help with the cost of the battery. This is good.

I am glad I have this log. I checked back to see how long I have been on the bicillin. It has only been 2 and a half months. I think I have about another 6 weeks to go before I am out of shots.

Last week was a good week because I was able to get out and about a little. This week has been a rough week so far because I have little to no mobility.

IT is times like this that a power chair will help. I think if I had one, I could at least empty the dishwasher and do the dishes or just go for a spin around the block.

I can't get to the kitchen sink right now because it is full of dirty dishes. And when I try to get something out of the fridge to eat, it usually ends up on the floor.

I sure hope a power chair will give me that edge at times like this.
 

I saw him because I have had several docs including my lyme doc tell me I needed to see a pulmonologist because of my shortness of breath with mobility.

It took 6 months to get in to see him, and then 6 hours out of the day. The next visit is in February. I need to get those records between now and then.
 

I am all ready into my checking overdraft again this month. I have enough to borrow to see him this time, but what about next time?

Finances are getting me down. I wonder what the odds are of me getting well without being able to take supplements and the other non prescribed alternative therapies.

I am also discouraged that I don't seem to be getting any better.

I know I will feel better just from talking or seeing my Lyme Doc. I feel like there is hope after seeing him.

But, I also feel trapped at times in my body and mind.

I would like to find something productive that I could do to supplement my income in order to take the stress off of things and to just plain be able to do something constructive that doesn't totally exhaust me.

This too shall pass.

This time last year, I didn't even know how I was going to pay rent, purchase food, pay utiities, etc.

Now, I have SSI as an income, a power chair that really has been a blessing, a dx, and a low income apartment to live in.

I am not sure what the problem is, but I do feel sad and discouraged.

Hang on in there you are a real fighter, I really do hope you get some more help with your finances.

Are you sure you are on the best abx for your symptoms? Lets hope your LLMD will help you, you really deserve some better luck.
 

I have hope again. I was very low functioning while there so I hope I have things covered.

I recall that I have my checks covered. I am too have a shot of bicillin twice a week in the right check and a shot of rocephin in the left check...I think that was twice a week too.

I also am to have a shot in the arm of B12. I think that was once a week, but I will double check.

I double checked and it says to see package insert of which there is none. Hmm.

I also have Tequin to take twice a day.

And a prescription for something else that I can't read at this time.

Just about everything came back positive on the CFS panel from MDL labs.

I need to contact the bee lady to see what it is going to cost to get a few things from her.

I listened to Dr. B's audio on the way up and found it very helpful.

I had two Starbuck Frap's and 4 excedrin to help me get through the day. I also reclined the passenger seat.

And we stopped at the Jelly Bean factory and took a tour on our travels.

I was really low functioning so not much was going in. I laid down on the floor at one of the stops because my batteries were running really low.

A kid got yelled at by his parents for doing the same at the next stop so I decided I would just concentrate on holding myself up and forget about trying to take in what the tour guide was saying.

I had forgotten how kids like to mimic others and it reminded me of my teaching days.

I'd like to go back when I am doing better and take the tour again. The smell alone is worth the tour.

All in all. It was a good day and everything went smoothly. My guess is it will take a couple of days to recover. And that I will be up most of the night due to all the caffeine.

I am so thankful my LLMD does not wear a white coat. And that I look forward to seeing him. And that we both have the same goal....to get me well and back on my feet.

I heard in Dr. B's audio that there is one lyme doctor to every 10,000 people with lyme. (Most have not been dx yet)

ON the other hand...lyme doctors are one in 10,000 in the medical world as far as I am concerned.

It is the strangest thing. It is almost like a break from the lyme. I have something that is familar. Unlike the lyme, I know this will go away.

I stopped all meds for now. I was sick to my stomach and had enough of the pressure in my head for lack of a better way to describe it.

Once again my Dad has put doubt in my mind as to whether or not the doc I am seeing is really helping me or not.

Then, the other teacher came over who came down sick the same time I did with the same symptoms. She is doing so much better than I at this point. That also put doubt in my mind.

She continues to complain of the stiff neck and some other things. I continue to tell her she needs to see a lyme doc.

But, then she is functioning so much better than I am. I am not very good advertisement for being treated for lyme disease as a way to get ones health back.

I also am still trying to get the syringes and needles for the B12 and rocephin. The in home health care person dropped the prescriptions off at the pharmacy that all ready told me they couldn't help.

I sure hope they don't throw the prescriptions away like last time.

I had told her to try another pharmacy in town and she went to the old one instead out of habit.

I also had strawberries and whipped cream and wheat thins.

I had the pain/pressure in my right eyeball again. Strange, but it is somehow connected to having white flour, or sugar, or diary, or pasta. It happens everytime even though it doesn't make sense to me.
 

The local pharmacy said they couldn't fill the order. They referred me to a pharmacy an hour away.

That pharmacy said they didn't have exactly what the doc ordered but could substitute 3cc instead of a 10cc and that the price would be $100 because my insurance would not pay for it.

Today, I was having my annual physical (about 3 years late) and the NP called the pharmacy across the street.

Viola. They filled the order for syringes and needles and the insurance picked up the bill.

The past two days have been better than usually mobility wise. I was out and about in my power chair from 9 am to 3 pm with a lay down break in between there yesterday and took a 15 min walk at sunset after reclining for 3 hours.

Today, wasn't bad either. Not as good as yesterday, but I was out and about some.

I laid down in the dentist chair which helped to recharge my batteries. Other than that, I was upright or in a recliner like position from 9 am to 5 pm. I did lay down for a while at the doctor's office while waiting..but it was in the room and on a table.

In the past, I have had to lie down in the office while waiting to see the doc.

I like having days where I can sit up for the most part.

Making progress??? Time will tell.
 

I didn't realize that this may be the reason I am having such a rough time of it lately.

But, this certainly wouldn't be the cause of the head stuff.

I stopped all meds yesterday afternoon. I have had my limit on this head stuff and am hoping by taking a break I will feel better or at least be able to continue with the meds.

I also will be starting the rocephin when she returns next week. So, I thought I would try to flash my body out.

I took a hot bath with epsom salts this am. I am drinking some detox tea I found at the local drug store and lots of water.

I am not sure if I want to take an excedrin today or not to help with the pressure in the head. Sometimes it helps and sometimes it doesn't.

I am feeling very discouraged. Just going to the drug store to pick up the tea was too much today. I also tried to purchase some veggies to plant and the epsom salts.

I was in my "dune buggy". It is so frustrating to be at this since Oct. 2001 and not see any progress and at times feel as if I am worse instead of better.

Especially when the other lady who came down sick at the same time with the same symptoms at work is doing so much better than I am.

Am I on the right track? I do believe lyme is part of this..but...??

I still don't understand how one can be working full time at work and at home one day and then be so low functioning for so long.

I still don't understand why I don't have my health back or what to do about it to get it back with the resources that I have.

I wrote a check on my checking overdraft in order to get the tea, epsom salts and 3 small plants today...not good.

I also am discouraged because I thought I would have thought of a way to bring in more income by now that I would be able to do during my higher functioning days.

Mostly, I just need the pressure in my head to go away and the high pitch sound in my ears.

I also notice that I have the twitching again in random parts of my body. I don't know if I notice it more because I am on my back more because the twitching is going on.

It is so strange to have parts of your body move under the skin at random.

If I look at the big picture, I still have a lot to be thankful for. I have a good LLMD who has helped me to get in home health care, SSI, and most importantly is trying to help me get my health back.

I have a power chair now. I have a roof over my head and it is quiet for the most part here.

I have been able to read now and then. I am on my 4th novel by Neveda Barr. I still have problems with focusing, recall, double vision, etc...but...I wonder if that is why my brain is aching lately??

I really dislike not being able to get out and about or having to rely on other people to take me to doctor's appointment's etc.

I would just like to get a trailer and travel.

Of course, just going away for the weekend would probably be enough for me right now and take me several days to recover. HA!

This too shall pass.

Maybe I will go for a cruise in my dune buggy and not try to do anything but sit there and enjoy being out.

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

That helped. I did OK for about 20 minutes and then had to turn back. But, it was good to be out.

[This message has been edited by kam (edited 20 March 2004).]
 

It had taken several attempts to get the needles and injectors that my LLMD had wrote a prescription for back in FEb.

My in home health care person and I tried to recall what how we were supposed to administer the rocephin and B12 shots yesterday.

We didn't feel comfortable giving it a try until we had a doctor show us again.

So, I went back on the bicillin, and two other meds the LLMD prescribed.

I ached all over and was a couch potato again yesterday after the shots and only one pill each of the orals.

I couldn't sleep again last night until about 4 am.

I have the pain in my eye again and the rubberband like headache.

I don't like it. I liked being able to function like I did for a few days while off the meds even if it was low functioning.

I have noticed that since I have been on the meds, I am lower functioning.

This is such a difficult condition to figure out.

I have doublts I am on the right track again.

I am going to take 2 excedrin and not take any meds today. I also am hoping to get well enough to get to the store to purchase some more epsom salts and take a hot bath.

I made an appointment with my LLMD in May. And I have placed a call to a NP that my LLMD told me about that is only an hour and a half a way who will work with him.

I also have lost my taste for food again. It was great all last week to enjoy the taste of food again while off the meds.

[This message has been edited by kam (edited 27 March 2004).]
 

The head nurse showed her how to administer the rocephin, bicillin and B12 shots.

She also gave us a box of bandaids, antiseptic wipes, some syringes and needles, and a bottle of the stuff to mix the rocephin in.

The help from this office is like night and day compared to the help from the office in my home town.

I have both the head nurse and the doctor a copy of ILADS guidelines. And I loaned my DVD and audio of Dr. B's presentation to the head nurse. She seems willing to learn about lyme.

I was able to sit up in the waiting room and do a little work while I waited just like I use to do before lyme.

It was great. But, I was fading fast towards the end of the visit. The sound of the fan in the room was too much, I couldn't process what she was saying and my body was really functioning low. That invisiable, fully loaded, semi truck ran me over again while I was in the waiting room.

I have had better than usual past 3 days. I was on my feet walking around town one of thsoe days for an hour. I also was able to attend a Bible Study one of those days. And I have been able to get the dishes in the dishwasher. I still need to empty the dishwasher and get the rest of the dishes clean. If I take it slow and do a little at a time, rest and then do some more, I am able to get the job done.

Still can't figure out what the cycle is with this and why I am able to do these things sometimes and then go days when I am nto able to.

I also was able to make some whole wheat biscuits one evening if I did it in steps, rested and then did some more.

So, the multi tasking is better.

And I started reading the Purpose Driven Life. My hope is that I will be able to read a chapter a day. We shall see. I have been able to read in the past and then wasn't able to again. I hope it sticks with me this time.

And I have been doing little short jogs. So, the connection between the brain and the legs is working much better.

I believe I am seeing improvement.

The difficulty with sleeping at night is still an obstacle. This seemed to start the first of the year.

I have not been able to sleep until sunrise the past two nights. And then for only a few hours. I did fall asleep on the couch tonight from about 8 pm to midnight, but then work up and haven't been able to get back to sleep.

All in all there has been more mobility the past 3 days. It is the 2 months that it took for me to problem solve and get the rocephin in me that mindboggles the mind. It doesn't make sense that I am functioning that low and it takes that long to get the job done.

It also doesn't make sense that the in home health care nurse isn't doing much better than I am in this department...she is just able to do the cleaning and cooking better than I can at this time.

I also received a bill from the local hospital of $700 for the blood work they drew for MDL lab. I am not sure why and will try to trouble shoot that tomorrow.

Was told again that the system is showing I have HealthNet again which is wrong. I haven't had Healthnet insurance for over a year. I need to trouble shoot that one too because medical bills are not being paid by MediCal due to this.

It is nice to have the head clear enough and the body strong enough to deal with these matters.

The local pharmacy delivered epsom salts to me today. Someone had prepaid for them. This was a nice surprise.

Started the sweats a little at night again.

Still difficulty focusing and staying on track.

Still have the chapped lips and dehydration with movement such as todays.

Perhaps it is the shortness of breath with mobility and breathing from my mouth instead of the nose??

Got the paper work signed for PG&E by doctor so I can get the discount on the air conditioning. Temperature still has a big affect on me and heat still shuts me down.

Growing garlic and parsley in pots on the patio. Lost one pot of parsley. Hope the other hangs in there. I try to eat a little parsly each day as recommended. I haven't been doing the garlic and need to give it a try again. Last time, I just couldn't get it down.

Also started free samples of colostrum. I think it is helping, but this thing cycles so time will tell.

Because brain and body is functioning better, I am able to make sure I get enough acidopholus down me too.

I am keeping a chart to record when I take the acidopholus to help me remember that I have or haven't taken it.

Blistered my feet a few days ago, because I didn't feel the heat of the sidewalk burning them. It takes so much to get my shoes on that I usually leave them off. Guess I better get in the habit of putting them on to be on the safe side now that the weather is getting hotter.

Local church also gave me a check which helped with food for the rest of this month and transportation costs to doctor. This is good.

Stopped by workforce to see if there was anything that I could do job wise at this time. I was pretty low functioning so couldn't stay long. Hope to go back and also check with school district.

I really need to just see if I can make it to the once a week Bible Study and church routinely first. But, my mind wants to be productive when I have a few good days.

The reality is that I am doing good if I can get to the grocery store and fix myself 3 meals and take a bath every other day.

I am not doing this right now. Sometimes yes. Most of the time no.

See LLMD in about 2 or 3 weeks I believe if I have the funds. I think I will be OK for May. REnt is being lowered by $60 then. I need to look at the budget and see where I stand again.

It isn't showing up yet. I'll give it a day or two and then check again.
 

I also received a postcard telling me that I would be interviewed within the next 4 weeks for a service dog.

My LLMD has recommended I try Bee Therapy and purchase royal bee jelly, but I don't have the funds at this time.k

He also suggested a pad to put on the bottom of my feet to detox, but I don't have the funds for that either.

I was able to wheel on over to Bible Study this am and laid down in the back during church service. I did dose off, but it was good just to be there.

I am exhausted on and need to be on my back for a while in hopes of recovering and being able to do a few things around the house.

I also am hoping to go to the 6 pm service now that we still have light.
 

I have been able to walk either 5, 10, or 15 minutes each day.

I have been able to hold myself upright for longer than usual.

The biggest benefit is my head is much clearer for the most part with the exception of this morning. I woke with what I call a rubberband headache...but it went away.

Things that have changed is that I increased the bicillin shot to 3 times a week and am taking the rocephin shots two times a week, taking B12 shots once a week, taking colustrum 3 times a day, making sure I take acidopholus 3 times a day, making sure I am eating 3 times a day, taking a hot epsom salt bath every other day, sleeping well at night now, making sure I get at least 4 bottles of water down each day.

The new part is that I am functioning well enough to be able to do these things.

I also know that I had these times in the past before starting on abx so I am not overthinking this until I gave it more time.

I am however really enjoying this for the most part. I am not normal, but I do have more mobility at this time and cognitive skills. I still need my down times to regroup, recharge and recover.

I just had my bicillin shot, rocephin shot and B12 shot so hopefully it will help.

My head is still clear as long as I am lying down. I do have a slight ringing in the ear.

I think I had almost 10 days of consistency. It was great. I could do a little, lay down, recover, and then do a little more.

 

Have contacts to make today, but not functioning well enough right now to make those contacts. Hopefully the head will clear and I will be able to later today.

Good day yesterday. I was able to sit upright for most of the trip. It was an 11 hour day.

Need in home health care who is able to coordinate all the medical needs when I am not able to..present one is good at household chores, but not other things.

I will be on rocephin IV for 6 months. Not sure if drug company will provide these drugs for 6 month. Forgot to ask LLMD.

CAlled SSI to find out what to do about correcting problems with MediCAl. Bills are not being paid and I am being billed for things. Told I have other insurance which I do not.

She gave me MediCal number. That number has been busy.

Head is a big problem today and getting in the way of getting things done. I will rest and try again later.

I noticed there was a new head shop in town, but I think they would just want to sell me pipes and bowls and papers....don't think they would have a new head for me.

Sure would like to know more about my doctor. He will be speaking in England for two weeks soon. I'd like to know how bad he was, how he got his health back, how long it took, what he was misdx with for 5 years before getting a lyme dx, and how I too could travel around the world and make a difference and also have fun hopefully!
 

I am not fit to be around today. I don't know if it is the lack of food in the fridge for a few days now or the inability to do simple clerical type of work or that I am getting better and thus getting less patient.(freudian slip)

I saw the primary doc. While I was there, I asked him how my test results came out regarding my annual physical which was 3 years late this year.

He just passed the buck and had the clerk make copies for me. I later was able to read them and saw that I was low in 7 things this time. I was fine 3 years ago. Now what. Does it matter that I am off on 7 of those things?

Is it just me or is there a lyme brain epedimic out there?

On the positive side. The article I wrote on invisible disabilities was in todays paper.

Don't know if I mentioned I wrote an article the first of the month on May is Lyme Awareness Month that was published two weeks ago.

These are good things. I could not have done these articles this time last year.

But, I also wrote them lying down.

Today, I tried to sit upright and get faxes out to my lyme doc, a pharmacy, the insurance company and one other that I can't recall at this time.

It was too much for me to handle. It was as if the oxygen or blood was not getting to the brain.

I need to go back to doing one thing, finish it and then start the next. It is just not in my character.

I wanted to make one trip to the copy machine. One trip to the fax machine. And one trip to the post office.

The paper work is backing up...some of it for over a year. Hopefully the next in home health care person will have secretary skills also.

I have medical bills that should have been paid by the insurance companies that are not getting paid and are going to collections.

They are saying my records show I have other insurance. I went through this last year too..it is on going. I have yet to find the correct person to change the computer to show I only have one insurance.

I have letters from the previous insurance companies stating when my insurance ran out an that I am no longer insured by them. Yet. the computers keep showing I have other insurance....lyme brains...comptuer spirochetes.

Then SSI is saying that they will stop the SSI income if I don't get the print out to them from work regarding income since 2002.

I have done this. SSI lost it or said they didn't get it. I am doing it again. Last time it was a big problem just getting the print out from work and then it was incorrect.

Hopefully, it will go smoother this time. Lyme Brains again?

Too many glitches in the system.

I brought my lyme docs prescription to the primary. The primary wants the lyme doc to fax him.

OK. Hopefully the lyme doc will turn on his fax machine tomorrow or empty his mail box or get my email message regarding the matter.

This time it is my lyme brain that is half the problem with trying to do these tasks that should be easy but or not.

I have an appointment out of town with a pulmonologist. I need to get on the phone and start asking for rides into town.

We don't have public transportation from point A to point B here.

I must be getting better. I am ready to get in the car and drive myself. I don't want to ask for rides. But, I don't have a car.

And there is the time this week when I had that other doctor's appointment and I had difficulty getting from the office to the car.

I certainly wasn't fit to be behind the wheel then nor could I have driven. I could have if I had laid down for two hours to recharge. I was not sleepy.... just very low functioning..even to the point of sitting up or laying down and reading.

It is evening and I would like to get out of the house. I know that I need to take the power chair in order to do this.

But, I so would like to walk instead.

Conclusion: I must be getting better. I am at least functioning at a high enough level to what?

Be angry? Frustrated? Sassy? Inpatient is the word.

It is a good thing I lost my marbles. I would probably only end up throwing them at this moment in time then falling on them and landing on my behind.

Sometimes we are our own worse enemy.

This too shall pass.

Will I get the rocephin?

Will I get to the grocery store?

Will I get to the doctors?

Will I get the Rocephin IV supplies?

Will it work?

Will I be able to drive again?

Will I get more of my independence back?

Will I learn from all of this?

Will I be able to do my own laundry and put them away so I know where they are?

Will I be able to do my own dishes and put them away so I know where they are and that they are clean?

Will I be able to write addresses in my address book any time I want to without having to wait until that window of opportunity?

Will I be organized again?

Will I be able to run in the sun again or swim or hike or fish or go camping?

Will I be able to hold my grandbabies and be able to play with them before they are old enough to drive me places?

Will I be able to get up early and start the day off with a shower each day again?

Will I have the strength to put on make up each day again?

I am not sure why I am down. I do know that I forced myself to get some paper work together to fax Thursday morning and didn't wait until I had the window of opportunity.

Not sure is that is what caused this or not.

I am doing better today, but still too weak to get out and about. Hopefully tomorrow.

At least I don't stink any more. I was able to take a hot epsom salts bath today.
 

It is like having someone throw you a life support system when you get to talk to the lyme doc.

He is going to talk to the primary doc and he is going to call in the diflucan and other drug for the gall bladder.

I didn't ask him about the rocephin.

I also received a call from the people who are installing the IV line. She is coming here tomorrow and then I am going to where ever they are installing the IV the following day. I am not sure what she is going to be doing here tomorrow.

And she will come out the following day to help train the in home health care person.

The primary doc went ahead and ordered 2 to 6 weeks of the IV rocephin and they will have all the supplies.

I thank him for that. He had been waiting to hear from my lyme doc since ?

My lyme doc wants me to be on the rocephin for 6 months, nut at least we are getting things started.

Things are starting to full into place. I also need to hire another in home health care person as the one I have is moving out of the area. If I didn't live in such and out of the way small town, they would have a list for me to choose from. As it is, I need to place an ad in the local paper.

I don't like the idea of having this tube in me. But, when I first started reading about lyme disease and what needed to be done to treat it. I felt that I was at the point that I did need an IV rocephin.

I pray that all goes well. And that I get my health back with this drug.

I continue to need to stay on my back today. I am OK typing this out while lying down with the keyboard on my legs.

But, if I try to talk on the phone or stand or sit....it is as if I am not getting oxygen or blood to my brain. It has been 4 days of this now.

I was able to take another hot epsom salt bath and I was able to get dressed today. This is good.

I also walked with difficulty to the mailbox. But, I did it. I hadn't been there in 3 days.

And I have wondered lately if there is a connection between not doing well and the twitching that goes on under my skin.

I don't know if I notice it more because I am having to lay still or if it is there other times and I don't notice it because I am up and about.

Either way, I don't like it. It is as if something alive is under my skin and I don't have any control over where and when it moves or for how long. It is usually for a very short period of time.
 

Will learn how to take care of things myself tomorrow.

Just hope the bleeding stops soon or I will wake up with a lot of blood on my sheets.

I also was able to do more today than I have been able to the past 4 days.

But, will need to keep my arm still and flat the rest of the night so mobility continues to be out at this time.
 

There seems to be glitch in the system. One insurance will not pay because the computers are showing I have other insurance.

I also included letters from the other insurance companies stating when my insurance expired with them.
 

I am excited about having a dog around.

The interview is next month..which isn't far off.

The wait after the interview could be up to 3 years. I sure hope not. I also need to go to school myself for 2 weeks at the training site.

NP said it was normal to have that much blood the first time.

It seems the main problem is weakness. Difficulty with eating, breathing and holding my body upright and moving. Cognitive skills too. Can't seem to stay focused or read or make decisions. CAble is out so being a couch potatoe is out too.

Good news is that more rocephin and supplies were delivered today. And someone brought over lunch which I am stretching to dinner too.
 

Mobility and sitting up is still out today. The left knee is in a lot of pain. Crawling is out because the arms are to weak too.

This too shall pass.

Good news is I had some unexpected income for food this month. This is good since after I paid the bills I only had $40 left for the month.

The cat didn't leave my side and went where ever I went all of yesterday and this morning.

I am a little stronger this afternoon. I was able to take a bath and put clean clothes on.

The cat seemed to sense this and is back to sleeping under my bed.

It was nice to have the company while I was so low functioning.
 

1. The first thing that comes to mind is the I am beginning to get ideas again.

2. I haven't had the sore tailbone in a long time.

3. I haven't had the feeling that I had been to the dentist and he or she had numbed my right cheek in a long time.

4. I haven't had the loose stools out of blue in a long time.

5. I haven't had the cramping in my stomach.

6. My shoulder/arm is not so painful that I can't move it.

7. I don't have that strange feeling in my mouth as if I am swallowing my tongue or something.

8. My doc says I no longer am giving off an order. (In other words, I don't stink.)

9. I haven't had those days where I had to lay very still and very quiet or I would throw up because of something going on in my head.

10. I don't wake up feeling like I partied too much the night before. (I am guessing that is what it feels like as I wasn't the drinking type to begin with)

11. I don't wake up with what I call a rubber band headache.

12. I can lay my head on the pillow and I don't get the numb feeling as often.

13. I don't get to the point where I feel like I need to go to the emergency room because breathing and moving is not working very well and is scary. (I think this may be because I am learning my limits now.)

14. I don't have the aching in the ankles and knees. (This too may be because I am not over doing it on my feet....but then again, I recently had those pains big time when I started the IV rocephin and I hadn't been on my feet.)

15. I am able to lie here and use the keyboard for longer periods of time before needing to take a break.

16. The bloating in the stomach is not as frequent. (I think this is because I am taking more digestive enzymes.) Although, I had the bloating in the stomach before I even started on abx.

17. I believe my hearing is improved. It has been some time now since I have watched the volume go off on someone when they were talking and just saw their lips moving.

18. I am able to sit upright at a meeting and process most of what is being said now for up to an hour at times. This is not something I take for granted. I still have my days when I need to be down and isolated. In fact, I am experiencing the meetings about once a week at church only. I am not sure how I would do at some other type of meeting yet.

19. I am able to enter my checks into the ledger and balance the checkbook now. (I have yet to get back to entering it in a data base as I use to.)

20. I am able to write and fill out forms for the most part now. I don't take this for granted either and wait until I have those times when I can do this.

21. I am able to feed myself breakfast almost all of the time now instead of having to wait until after 3 before I was functioning well enough to get in the kitchen. (This may be because I have the in home health care help 10 hours a week. It helps. I am not so drained I can't function. I also have the power chair that helps to conserve strength too)

22. My hands do not turn ice cold as if they were out in the snow from being on the keyboard for a short period of time.

23. The insides of me do not shake like they use to. (Again, I think this is because I am learning my limits and am not trying to be normal when I am not.)

Well, that is about it for now. I will try to find the log that I kept when I first came down with this and see what else I can ad.

I was having a discouraging day so I thought it would help to look back and try to recall what symptoms I am no longer dealing with or what I am able to do now that I wasn't before.

1. I am able to do a monthly budget now.

2. I am able to write the checks in the ledger and balance the checkbook now.

3. I seem to be better with numbers too.

4. My hands don't turn ice cold and ache after using the keyboard for a short time.

5. I am able to take a bath almost every other day now.

6. I don't wake up feeling like I have partied all night. I am assuming here because I never did the drinking stuff.

7. I don't wake up with what I called the rubber band headaches anymore.

8. My checks no longer feel like they do after you visit the dentist.

9. My tail bone hasn't hurt in a long while.

10. I'll get back to you on more. Break time again.

11. Every once and awhile I am strong enough to put on a little makeup.

12. I haven't noticed the tingling of the hands and feet most of the time when I take a hot bath. (I had that for years and just thought everyone did this.)

13. I haven't had the shaking inside or outside as if I just crashed and burned on my motorcycle..but I feel that is just because I am not trying to be normal anymore. I do get it again if I don't stay within my limits.

14.

After being very low functioning yesterday, I was able to get out and about today for a couple of hours in the power chair, take a break, empty the dishwasher, take another break, and then pick up a few things at the grocery store in the power chair. I am hoping to be able to finish in the kitchen this evening and bake some chicken and water the plants.

It is so nice to be able to do these things.

I haven't been able to do this much in a long time. This is good.

I am wondering if I was so low functioning on Monday because I had not had an rocephin for two days>

I was able to reschedule the appointment for the interview for the assistant/support dog.

I have the rides lined up and am looking forward to seeing if I am a good candidate or not.

I am not looking forward to the train/bus ride. The last time I took a ride to my LLMD's, I told myself that I would avoid that if at all possible.

It is OK if I am doing OK. But, if I am having one of my rough days the movement and noise is too much. I also hope I get a spot with two seats together so I can lie down.

[This message has been edited by kam (edited 17 June 2004).]