My legs are really starting to swell, my knees are hurting and the pain in my feet has increased to the point where it’s starting to really bother me.

Spent the weekend at my parent’s house.

I was able to go up the three steps on the deck by myself.

I also forgot to pack my booster seat for the commode, but it didn’t matter because I was able to get up anyway.

Yea me! The PT is paying off.

I saw Cheryl today, and I’ve gained about 20 pounds. Most of this is water weight because of the Edema. She is putting me back on the Zaroxolyn and she called Dr. Garrett for a script for Bumex as well. Bumex is going to be a problem; there is NO way I can take that and work as well. That script has me going to the bathroom every 20 minutes.

The best news is that my blood sugars continue to go down and come in line to where we want them to be.

Went to see Dr. Garrett today, the nephrologist, (kidney specialist) that Cheryl sent me to see because I was "spilling protein". The test results are not good. According to the numbers on the test results, I’m supposed to be scheduled for dialysis any day now. It’s a good thing Dr. Garrett doesn’t just go by the numbers and knows how to think for himself.

While he does agree there is some damage to my left kidney, it’s not as bad as it seems. I’ll go back and see him again sometime in December.

On the CIDP front: I’m beginning to have more pain in my feet again. And the swelling is returning as well.

Went for another round of IVIG today.

I'm scheduled to get IVIG twice a month for the next two months, so this will take me into December, about a week before the Christmas holiday.

I've been getting IVIG for about seven months now, and my reflexes are just starting to come back.

It's a start.

I should have known it was too good to last. Was up several times last night going to the bathroom.

My blood sugar was really high this morning. I’m hoping it’s because I took my last med so late last night. Then again, higher blood sugars may be the reason why I was going to the bathroom so much last night.

I’m going to see my neurologist this morning and get an update on my treatments and how far I’ve actually progressed. I know I’m stronger, but I also know there are things I still can’t do.

I’m hoping she can give me a "general" idea of what to expect from here.


Good news!

I’m getting more of my reflexes back! I now have reflex action or re-action in all four limbs. It seems the combination of Prednisone and IVIG is working, so much so, we are once again cutting back on the Prednisone dose. I’m now down to 30mg per day.

I asked Dr. Schecter about extending the time between IVIG’s to 3 weeks, but she said she wants to wait to see how I do with the reduction of Prednisone first. If I’m able to handle the reduced steroid amount without any adverse side effects, then she will see if I’m able to go three weeks between IVIG’s. If I’m not able to go three weeks between IVIG’s then we will know it’s the timing issue of the IVIG and not the reduced steroid amount.

Overall, we are both pleased with my progress to date.

Still sleeping through the night and no serious leg pains lately.

Went to aqua therapy on Friday and my legs are still hurting. I’m still not able to pull myself up the ladder to get out of the pool by myself.

I wanted to go to the State Fair this weekend, but Austin and I decided that it would be too much walking for me to do right now and since I didn't want to take the wheelchair, I'll go next year.

I was up at about 6.15am this morning. I’m still sleeping through the night.

My blood sugar was higher this morning than it’s been in a long while. It might be because I waited so late to take my evening dose of Prednisone.

My legs are bothering me today and the “shakes” are back with a vengeance. I’m hoping things settle down over the weekend because I have an appointment to see Dr. Schecter on Monday.

One more day to go.

Stayed at work until 1.30pm today, then went to physical therapy. Did the lower body workout today. It’s only three machines but they really work my leg muscles.

The only thing I want to do after the lower body workout is sit in a hot tub, but since I can’t get out of the tub by myself, that is still out of the question. For now anyway.

Today is Wednesday and I’m already TIRED.

My arms and legs are heavy and dragging by 7.00pm and my feet are starting to swell, which is the LAST thing I need. They really hadn’t completely recovered from the Edema.

My original plan was to be back to work full-time before the end of the year. To be honest, my confidence in my ability to do this is waning. My appointment for Chapel Hill is not until January, and I’m being advised to wait until after then, but things at work have made it necessary to rethink this.

The good news is I’m still sleeping through the night without any problems and my blood sugars are coming back in line.

Last night was the first night I slept COMPLETELY through the night without getting up AT ALL for ANYTHING!!!

Today was my first day back to work part-time.

This week will be a good gauge of how things are going to work out with the fatigue factor of CIDP.

Even though I’ve been preparing for this day by sitting at my computer at home for quite some time now, I’m still tired.

I have to wonder what I’m going to be like on Friday afternoon after a week of working part-time and doing physical therapy on Tuesday and Thursday.

Am I going to be ready for the next phase, which is adding aqua therapy into the mix?

Slept until 8.00 am this morning. I can hardly believe it myself.

I've been given clearance from my job to come back to work part-time starting on Monday, the 17th.

My PT insurance has run out so I need to sign up for extended PT w/Wake Med tomorrow.

I also found out that the Aqua sessions are not covered by my insurance either. If I want to do the Aqua part, I'll need pay out of pocket as well or use the city pools.

I had my IVIG today.

Today was my first time using this pump with IVIG.

The IVIG solution has a tendency to increase my blood sugar levels. With this pump, I was able to set a temporary basal rate while getting IVIG. This is really cool!

Only got up once during the night and slept until 7am. YES! This insulin pump is great. I'm still being monitored each day and we (Frankie) and I are still making adjustments to Basal units, timings etc. but things seem to be working out.

Austin is still here. Seems the 11.15pm bus was over full last night and the next bus out wasn’t unit about 3.45am. I told him about waiting until the last minute and taking that late night bus, in case things go wrong, but nooo, he has to have things his way.

Today is Monday and he’s missing a day of work because he didn’t want to listen. . Oh well.

Went to the office today. I’m supposed go back to work part- time next Monday. We shall see.

Up at 3.45am to check blood sugar. Couldn’t get back to sleep until about 4am. I haven’t done this in a while. Up again about 7am.

I was starting to sleep better at night and not getting up so much to go to the bathroom. It’s only been a week and the pump is making a difference.

The Edema is getting so much better. I can wear my tennis shoes again! My left foot is back to normal and the right foot is getting there.

Still having issues with numbness, tingling etc in both feet.

Austin is still here.

Austin woke me up at 3.30am to check on my blood sugar.

For today’s leg exercises, I drove the 5 speed while we were out and about today.

It’s a dreary day today. Warm, but cloudy with rain off and on all day today.

Slept until about 8am this morning! It’s getting better and better. I think the rain helped.

I’ve noticed that my blood sugars are quickly coming back under control with this pump. It’s a lot easier to control my blood sugars with the pump. I just have to remember to count my carbs for EVERYTHING and enter them into the pump before I eat.

I was able to change the reservoir for the first time without any problems and without wasting too much insulin. This insulin pump is not as bad as I thought it would be. I just have to get used to having something attached to me at all times.

I have physical therapy at Rex Healthpark today. I’ll need to decide if I can afford to sign up for the "Six Weeks" course. I want to, but $100 is pricey right now. The aqua therapy is covered under my insurance.

Austin is supposed to come down this weekend. We shall see.

I woke up to Mister whining to go out. It was 7.15am. Can you believe it? I don’t.

Frances from the pump was supposed to call about 9pm last night to review my pump numbers. She didn’t call until about 11pm, right when I turned out the light to go to bed. We went though the numbers and she showed me how to do a "correction’ when my blood sugar is too high. It was. I forgot Cheryl set my goals from 100 – 150 and that a 250 blood sugar is now too high. I need to get used to this. That has been "normal" for me for since July.

It’s a good thing I’m used to getting up in the middle of the night, otherwise I’d be ill having to get up between 2am – 3am to check blood sugars and do corrections.

My blood sugar was a 148 this morning. Pretty good for me.

Austin called last night. First time I’ve heard from him in a couple of weeks. When he called the first time, I didn’t answer the phone; I just let it ring.

I knew he would call back later. I answered then.

It was a strained conversation, but what did he expect? Just that, according to him, therefore, he got what he expected.

Up at 6.30am.

Didn’t sleep well last night but what else is new.

Needed to be up between 2am – 3am to check my blood sugars because of the new insulin pump. I’m going to be monitored for the first week to see how I’m doing on it.

Went to aqua therapy today. It was good to be able to get into a pool again, even if it only went to 4 feet deep. The warm water felt great.

Hopefully I won’t have any ill effects later today, because I think this will really be beneficial to my recovery.

Up at 6.30 am.

Slept most of the night without getting up to go to the bathroom more than twice! Cool Beans!!

It’s been a long while since I can remember sleeping well. .

I needed to take a Bextra before I went to bed last night, maybe that had something to do with it.

9.00pm
Had my insulin pump class tonight. It’s a little daunting being dependent on this little machine. It’s supposed to make things easier for me. All the basic and important calculations have already been done and programmed in, all I need to do is input the carbs and my blood sugars before I eat.

Up before 6.00 am.

Spent most of the night going to the bathroom every hour on the hour.

This new script Dr. Garrett gave me for this Edema is something else! It's called Bumex and it's supposed to "get blood out of a turnip".

Well....it's definitely getting liquid out of places......

It states "take twice a day". I don't know about this. I need to get some KINDA sleep, and I don't sleep well at night as it is.

Up at 6.30 this morning.

Spent most of the night going to the bathroom. Good thing I have the ability to go right back to sleep afterwards. Don't know why I'm "running" so much. I thought things had slowed down, so to speak.

Blood sugar was 145 this am, which is pretty good for me considering it's under 200 for a change.

Today will be a busy day for me. Support Group Meeting, eye glass pickup, and med's pickup. I'm quite sure something else will come along.

The GBS/CIDP support group meeting was interesting and informative. It was nice to see other people who have the same issues as I do. I’m sorry we have this disease, but it’s nice to know that I’m not alone. The next meeting is in March ’06.