August Update

Monday, August 16th 2010

I had my August neurology visit today on the heels of my most recent IVIG treatments. Even though the explosive improvements June and July weren't there this time, I am continuing to make good progress.

My neurologist feels it is time to switch to a maintenance treatment program:

• Instead of getting a week long IVIG course, I’m going to get one a week and see how I do.

• I’m going to continue to cut back on my prednisone, five milligrams every two weeks until I get down to 50 milligrams a day. This will help with the side effects. If I’m able to go down on the prednisone, I could go off one of my anti-depressants. While the anti-depressant helped with the steroid induced mood swings, it is had its own set of side effects.

• She is concerned about my weight loss. I’ve lost over 70 pounds since I first went into the hospital in March. I was expected to gain weight as a side effect of the medications. She suggested I try eating more.

• I’m okay with that.

• The best news of the day is that I no longer have to wear my cursed mantihose during the day. Because my legs are much more active than they have been I don’t have to wear my mantihose. She suggested I switch to knee-high mantihose, but I don’t see that happening. Because I’m not going to be wearing the thrombosis hose any longer, I need to increase the amount of activity in my lower legs. To celebrate that, while doing my evening lap tonight I spend a significant portion using my feet to propel my wheelchair. My calves are tingling, not unpleasantly. I assume the feeling is from blood being pumped through tissue that has been largely unused in recent months.

• Also to help prevent blood clots, I’m going to start taking a baby aspirin every day.

Of course the switch to maintenance is a little scary to me. My brain immediately jumped to, "What if I get sick again?" My physician said to call her immediately if I start showing any symptoms. The solution would be to go back to my five times a month IVIG treatments. Of course with CIDP, nothing is certain.

I also had my monthly physical therapy assessment this morning. My PT was properly amazed at how much progress I’ve made in a month. "Last time I saw you," she said, "you were nearly paralyzed." That was the first time anyone had used paralyzed in reference to me.

Once again my “ glass half empty” world view kept me preoccupied with how bad things could really be. That is some serious stuff, being paralyzed. The most unfortunate people are paralyzed. Is that me?

I am still getting stronger every day. Insurance is taking care of medical bills. I just got a new (hand crafted by a friend) table so I can use my computer anywhere in my wheelchair. I had lunch today in uptown Oxford, outside where I could watch the returning students.

And I didn't have to wear my mantihose.