On the floor again.

It took Linda a good half and hour and two chairs to get me back up. Good thing I had my front door already unlocked when she came to get Mister.

I contacted a contractor to build a ramp for me. He came out, did the measurements and then told me he would call me later with an estimate.

He did - $3,700.00 for an ADA specific ramp. PLEASE!! I don't think so!!

My LEGS don't work right, not my mind!!

God Bless my neighbors!

Linda took me to Rex for my IVIG today and helped me back into the house. She is also helping out by walking Mister for me.

What is going on with my Blood Sugar today? It's 505! I need to call Cheryl ASAP! It's got to be something in the IVIG to cause this.

Well it turns out that I was right. The Polygam IVIG has a fair amount of Glucose in it. Cheryl has called the Pharmacy at Rex to find this out.

She is also going to call a few other people to find out what we need to do for my next dose of IVIG so it doesn't happen again. The woman is on the ball!

Happy Birthday Mother !

I can't get out of my own house because my legs don't work right. This totally sucks! I need to get a ramp and quick.

Things have gone from bad to worse. I’ve been having problems with going up steps lately, but this tonight my legs just plain gave out at the worst possible time.

I took Mister out for his last elimination and to my horror, I did not have enough strength in my legs to be able to lift them high enough to go up the steps to my house!

After much pulling on the rail of my steps and continuously trying to lift my legs, I finally needed to sit down for a while and rest. After a while I tried to get up. That was when I realized I also didn’t have the strength to get up from a sitting position. DAMN!

I tried to raise myself up and "butt" my way up the next step and into the house, but that didn’t work either. I have no strength anywhere. Not in my legs, nor my arms.

I REFUSE to cry.

After sitting outside for over an hour or two (in the heat and humidity, but it’s dark, so for this I’m glad) I hear my neighbor coming home and thankfully he hears my call for help, comes over and gets me up.

Don’t ever let anyone tell you that GOD doesn’t answer prayers. He certainly answered mine this night!

I have three doctor’s appointments today.

I’m riding up with Dad to RDU to meet LaShonda and Bri.

Okay, I’m beginning to understand what it’s going to be like to travel with a disability and this walker. I’m really going to have issues if I have to travel in a wheelchair. Well, maybe not, I guess it would depend on where I’m going and how I plan to get there.

I know from today’s experience with RDU security, I’m going to have to try to be a lot more patient with people.

Example: as I was going through security, they wanted me to take my shoes off. No problem. Now, if you see someone with a walker, be considerate and get her or him a chair BEFORE asking them to take their shoes off.

After the child (he was younger than I am) went and got me the chair, he asked me to remove my shoes. He was taken aback when I told him he was going to have to remove them himself because I was not able to because I couldn’t bend down.

Then he wasn’t happy when he needed to "wand" me and had to actually lift my legs. He was really put out when I told him he was going to have to get me out of the chair he put me in and the way it was going to get done was by me having to wrap my arms around his neck as I tried to stand.

I guess he figured RDU security didn’t pay him enough to get this "up close and personal" with the public.

All in all it was a good experience for me to go through. Now I know I can do it.

Going to Mom’s house this weekend. LaShonda and Bri are coming in from Arizona Saturday. Will be good to see them

Went to see Dr. Schecter today.

I feel mentally stronger than before. Having issues with my legs though.

As usual, some days are just better than others. Nancy has reduced the Prednisone from 60mg to 50mg (per day). It’s still high dose, but at least we are moving in the right direction of reducing the dosage.

Doctors Impression:
#1: CIDP appears to be responding to IVIg. She is definitely stronger than July 05th, it is too early for the high dose Prednisone to have kicked in.
#2: Abnormal EKG, for stress test in early August.
#3: One month edematous RUE. #4: Exacerbation of DM and HTN from steroids.

Cheryl did an EKG which came out abnormal (so what else is new) and referred me to Capital Heart Assoc for a follow-up.

It's somewhat distressing to have to tell a Medical Doctor WHAT your medical condition is. Somehow you expect them to know.

Physical Therapy at Wake Med today

My first meeting with Donna Hooper-Knox.

We already have issues. Her building is an old one and she is one the second floor and has no elevator. It took me a while to get up those steps.

We have agreed that I'm taking enough meds right now, and that we are going to "talk" about what is going on with me regarding my issues with CIDP and go from there.

I'll see Cheryl later today

It's hot!

I need to call Dad and ask him to watch Mister for me.

As much as I hate to do it, Mister is too much for me to handle right now. He can pull me off balance too easily.

Finally got my eyes checked. I guess Prednisone is good for something. Once I told the eye doctor I was on them, she redid my paperwork for the insurance. Stating something about the fact that I'm taking Prednisone would make it a Medical claim and that I would still be able to use my ABB Inc insurance at a later time.

And get this, she also knew about CIDP. It seems someone in her family has/had something very similar to it, so she was very careful in her examination of my eyes. She did tell me that with the Prednisone and the fact that I'm a diabetic, my eyes would get worse, then adjust.

We both agree that in the meantime, I may need to stop driving for a while.

Second day for IVIG

Today I'm on the 7th floor. This is where the just delivered moms are put. Needless to say, it was a noisy floor. But at least I had my own room with the standard TV and private bathroom.

IVIG today.

I'm not in the Day Treatment Center today. Today I'm in the Same Day Surgery part of Rex Hospital.

I’m So ready for my next IVIG. My legs are just not co-operating.

I don’t know where or why I’m so fatigued all of a sudden. It’s everything I can do just to get out of bed.

I need to buy a "booster" seat for the bathrooms because it's getting harder for me to get off the commode. I was frying fish and almost burned the house down because I couldn't get up in time.

And what the hell is going on with my eyes? Strobe lights, flashes, such pain. I’m past due to get my eyes checked. I'd better hurry up and do that before something else goes wrong. Damn!

Today was my first day on steroids.

My blood sugar skyrocketed to 353! What the hell?!

Cheryl (along with Dr. Schecter) wants me to start taking anti-depressants or at least begin to speak to someone about what is going on with me in regards to me being depressed. Personally, I think I should be depressed, at least just a little.

You don’t tell someone that they have a rare chronic disease and DON’T expect them to be just a little depressed and some point and time. But I did agree to see someone.

I’d rather see someone than take another pill.

Going out on Short-Term Disability.

Don’t like the idea, but it will make Sonia happy and will give me the time I need to get better and to give these medications a chance to work.

Dr. Schecter is changing the frequency of my IVIG from once a month to twice a month. She hopes that this along with the steroids will boost my immune system. Part of the issues with steroids is that there are so many side effects and issues with steroids. I’ve got more med’s to take because of these steroids.

Dr. Schecter has made an appointment for me with someone named Cheryl Proctor at my GP’s office to monitor my diabetes. Since I’m going to be on steroids for sometime, I’m going to need to start taking insulin.

This is something to look forward to. (Right)

Doctor's Notes

Impression: Progression of CIDP despite monthly IV Ig, with improvement after the first dose in April. Initially we were trying to avoid using high-dose IV Solu-Medrol because she has diabetes.

Plan: Increase IV Ig schedule, 0.5 gm/kg q.2 weeks. Add high dose Prednisone, 60mg daily, with calcium + D and Fosamax. Try adding Topamax 25mg h..s. for pain, it can also help with diabetes control and weight loss. Refer to primary care for help with diabetes and hypertension as we add steroids. Consider antidepressant for reactive depression due to medical problems and concerns about independence and ability to work. She understands that treatment does not guarantee improvement and is upset about the possibility of further loss of function. Follow-up two weeks.

In such pain last night and today.

There is no way I can make it to work, nor am I going to make it to my appointment next week I need to see Dr. Schecter TODAY.

Made it to Dr. Schecter’s office, she’s going to admit me to Rex tomorrow for IV steroid infusions. There is no way around it now, the IVIG alone is just not working.

Nancy also did another Nerve Conduction today. Results are below:

Summary/Interpretation: Compared with 04/14/05, the righ median, ulnar, peroneal and tibial moter responses are all a little slower in DL., fairly stable in CV, a little slower in CMAP amplitued, and F waves are still moderately slow. The right sural SNALP is now normal. The right medial SNAP is now absent. The right ulnar SNAP remain low amplitude and slow.

Impression: Mild worsening of slowing in motor nerves, with further disperioni of CMAP resulting in lower amplitudes, compared with 3 months ago. Some sensory nerves improved, others a little worse. Overall mild progression of CIDP, after several IVIG treatments. Clinical correlation recommended.

How much more am I going to have to endure?

Austin left too soon today.

My butt hit the kitchen floor as I was trying to pick up a bag of groceries off the floor and put them on the counter.

Since the food was in a plastic bag, it didn’t weigh 10 pounds, and I didn’t have the strength to pick it up without hitting the floor.

Worse yet, once I hit the floor, I didn’t have the strength to sit up, or get up. I ended up rolling to the couch and pulling myself up onto the couch. It took a half an hour for me to get from the kitchen to the couch.