Up at 1.15 am til about 3am

IVIG today.

I met a woman from Fayetteville named Janice who has CIDP. According to her, she's had CIDP for over 20 years and has been misdiagnosed all these years. Janice told me that one doctor told her that with all the medical problems she's had, it's a wonder that she's still alive.

Just goes to show that Medical technology has come along way in 20 years.

Up again about 2 something until about 3.30 - 4am. Once again, why can't I sleep?

No pain last night.

I truly think if I didn't have this swelling in my legs and feet I would be able to walk.

Finally!! I reached a Fasting Blood Sugar of 141! Yes!

Went to bed early last night and was up at 2am. Stayed up until about 4am. Why can't I sleep?

No dope last night and no leg pains. Woke up again between 6 - 7am.

I think my legs would feel a lot better if they were not so swollen.

Slight tightening in chest.

Backing off on the dope at night. Feeling shaky in the mornings for some reason and legs are feeling funny, like they are going to give at any minute.

Not getting much sleep lately.

Going to bed at midnight, waking up around 2am, back to sleep about 3am, then for some reason I'm back up at 4.45am.

Up most of the day, I may doze sometime during the day. I try to stay awake during the day and not nap so I'll sleep at night, but this doesn't always work.

Legs are really bothering me. They feel like they have 20lb weights on each of them.

Took Topamax and Amitriptyln last night and had not leg pains. Legs are shaky this morning, may need to use wheelchair today. In wheelchair today, legs are very heavy and painful.

Went to PT anyway. Didn't want to miss out on anything, wasn't able to do any type of standing exercises, but was able to work out on the tablemat by lying on my back.

Where there is a will etc..

Woke up about 2.30am because of intense pain. On scale of 1 - 10, I'm off the chart (damn 10 being the highest), I'm taking more Topamax and Amitriptyln, but it's taking a while for it to kick in.

Fell coming out of the bathroom and once again, not able to get up. Waited until daylight to call Mom & Dad.

In bed for remainder of the day. Only getting up to go to bathroom.

Called Nancy and Cheryl to give them updates regarding fall.

Typing / writing are doing okay. My arm doesn't hurt must with doing anything these days. I still have residual numbness in both hands and fingers.

My internal thermostat went crazy today. I had the AC turned off early and when I turned it back on, my nerves went bezerk! I got soo cold that my teeth started chattering so hard that I got a headache! What the hell is going on??

I'm back to taking Topamax and Amitriptyln at bedtime because of nighttime leg pains.

It's 3.45 am and I up because of the pain in my legs.

The numbness in my feet is easing up, but the pain from the swelling is still there.

There is tightness in my chest whenever I get up and move around. I need to check the side effects on this script Cheryl gave me for this Edema

Really having problems with this Edema thing. Legs and feet are painful and it's not from the CIDP. It's from the swelling, which makes it harder to walk.

Some sensations are returning!!

Mister licked the top of my foot and I felt the warmth and wetness! Yea

Well the ramp has been up for a little while now, and I'm slowly getting stronger. My doctor's appointments are not as often.

I think this is a good time for Mother to go home.

Had a follow up with Cheryl today. Needed to discuss the Edema and Blood Sugars and get the results from the Stress tests.

Good news - Mother stepped on my toe and I felt it! Never thought I'd be happy when someone stepped on my toes.

IVIG today.
Mother and I may go to Spring Lake later today. Will be nice to get away

Seeing Donna from Mental Health today.

PT @ Wake Med.

I've lost over 20 pounds since July 05, 2005 and I'm on Steroids! Most people gain weight.

Doctor's Notes:

Impression: Weight 236. Gait is stable with a walker, weaker on left leg, with hip flexion and dorisiflexion 4/5. Grip weak bilaterally, 14 kg on the left and 10-11 on the right, interossei 4/5. Full-strength eye closure, check puffing, deltoids.

CIDP continues to be fairly stable with a combination of high-dose Prednisone since early July, and IV Ig started in April. Continue 2x month as long as it is available, continue Prednisone. Ok return to work part-time with wheelchair, and ramp for home use. Follow-up one month.

Went for my Nuclear Stress Test today. This took most of the day.

No one expected the medication to set off the CIDP. My nerves went straight RAW! I was in so much pain. The guys in the office thought I was having a heart attack.

I was down for the remainder of the day.

Meeting with Mental Health today, then OT and PT

Legs are starting to swell up. Will need to have Dr. Schecter or Cheryl look at this.

Today is Mother's Family Reunion

Blood Sugar was a little high, but that was to be expected since I actually had an appetite today.

Today was a good day!
AMEN!!

Rode to Baltimore today.

Hard ride. Legs are cramped. Lesson learned - need to ride in front seat of car and have driver stop more often.

PT and OT today.

Need to drop Mister off at the vet. May be going out to town tomorrow.

Taste buds are shot. Everything tastes like wet cardboard.

Have OT and PT today

I'm at the point where I need to have someone here to live with me, so Mother is coming to stay with me for a while.

I'm meeting with Donna from Mental Health today. I'd never thought I'd be meeting with a professional. We as a people usually don't go this route. We have girlfriends, preachers, sista's, mommas, etc who we turn to with our problems and issues.