The only constant is change

We have had 65 days of temperatures over 100 degrees Fahrenheit (38 degrees Celsius), and today will make 66. I'd forgotten how ferociously cabin fever strikes during these slow, hot Texas summer months. Just like in winter, we move quickly from the house to the van, from the van to the office/store/restaurant. And we move just as quickly on the return side.

Jordan went back to Illinois just over a week ago, after spending eight weeks as BR's live-in caregiver. It wasn't always smooth, but we did finally find a groove, and enjoyed her company. Jordan spent most days up in her room, which couldn't have been easy given that the A/C was not able to keep up with the heat and temperatures would reach 80-85 degrees each day. Great for beach. Not so good for bed.

We had a neurologist appointment on Monday. We really had only one expectation going in. Both BR and I were sure that he had gained some weight since his last sit on the scale four months ago. To our dismay, he's lost seven pounds. In four months.

131 pounds divided by 1.75 pounds lost per month leaves 75 months until 0.

Tonight was meatloaf night, with salad and heavy honey mustard dressing, black-eyed peas, and homemade peach ice cream for dessert.

The neurologist put BR on a more sustained schedule of steroids. Instead of three grams of prednisone every three months, he's taking one gram every four weeks. The difference in his energy levels, appetite, and comprehension is amazing. Please, no whammies!

I'm not dead yet

No way back. No good options left.

As he entered the waiting room, a large, friendly sign instructed him to be seated and wait for his name to be called.

"God will be with you shortly."

The neurologist has disengaged. He didn't offer any treatment courses to help manage BR's symptoms. When we brought steroids back up as an option, his response was "OK. Do you want oral or IV?" I got the distinct impression that he didn't think there was anything that would help, and he would have prescribed hemlock if we asked for it.

So I turn to you, dear readers. Do you have any experiences or advice regarding the difference between oral Prednisone, or IV Solu-medrol?

The Wheelchair Kamikaze warns of a side effect called Avascular Necrosis, which he got while being treated with IV Solu-medrol.

I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.

Lisa Emrich has a nice article on Health Central summarizing the more common side effects.

In 2005, I was in the process of being officially diagnosed. After the results of my Lumbar Puncture came back, I was called into the neurology center to begin a 5-day adventure into SolyWorld. One of the other MS patients already hooked up mentioned that it was like “PMS in a bag” - a description he and his wife had lovingly coined.

WebMD offers:

Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.

Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.

Hmm. So we may just be getting a short period of better quality of life at the risk of some pretty severe and permanent side effects. Maybe we can play a timing game. A round of steroids now to help get through the hot Texas summer months. A round in November to help get through the holidays.