I slept deeply and peacefully last night…with only one trip to the bathroom. When it was time, I woke up slowly and comfortably. The first thing I noticed was that I was not horribly queasy. I just sat up in bed! It was not like climbing Mt Everest. It did not make me short of breath. I stood perfectly still and put on my nightgown over my head, while raising both arms. I walked to the bathroom with only minimal pain. I lightly held onto the walker instead of clinging to it for life. I both sat down and stood up from the toilet without using both hands. I just moved in space without support. I shot up my insulin without being doubled over in pain. I easily drank down my juice with Miralax. There was no trouble raising my arm and no trouble swallowing! I was not mind bogglingly dizzy. I could see just fine. As I filled my weekly pill box, I realized it was easier to think. I was not doing everything in a stupor. The cloud had lifted.

The difference in quality of life is HUGE! It’s weird that I accepted all my difficulties and figured there was nothing to be done about them. I thought without IVIg, I was just stuck being permanently miserable. Unfortunately there are drawbacks to steroids. After awhile, the side effects build up and are as bad as what was wrong before. Steroids raise blood sugar, weaken connective tissue, cause weight and fluid gain, accelerate cataracts, cause a feeling of “permanent PMS”, etc, etc….


I had gotten up at 3 AM to take my night dose of Mestinon and Motrin, so I wasn’t due to take more until 9 AM. I finally remembered at 9:30. Then I got up to make breakfast. I made hash browns, eggs, tomatoes, half onion, half avocado, 2 slices Provolone cheese and some Hatch Valley Salsa (for $2.33). About half way through I got SOB, it was painful to stand, I got wicked bad dizzy and I felt sick again. I sat down with my plate of food and gulped air. I struggled to breathe a few more minutes and realized DUH!!! I had not yet taken the Medrol and Plaquenil.

I got a good loading dose Friday/Saturday because I took 6 pills Friday night and 5 pills Saturday morning. Today I only took 4 pills. I hope the feeling of well being comes back. At almost noon, I don’t feel well at all. Boooooooooo……hisssssssssss…..

My neck/back of the head is swollen up, I hurt all over, I’m queasy. I am bummed! I found myself once again hunched over and leaning as far forward as possible so I can breathe. At 3 PM, the wicked bad headache hit, my right arm doesn’t want to lift and my lymph nodes in the groin area are back to being painfully swollen. I am starting to hate life again. This sucks. I need more steroids.

The good news is the lesser dose of steroids hit around 6 PM. I can lift my right arm again. I am in limbo between feeling OK and crying about it. I have been going back and forth according to how well my meds are working at that moment. I sure would love to be put on a daily dose of steroids to keep me feeling well and even. But…..all that would be unnecessary if I just got regular IVIg. Steroids have a lot of bad side effects.

I have come to realize how unimportant I am in the scheme of things. An old, poor woman is not worth very much. Few people want to waste resources on me. Utah sure doesn’t.


Olive is my guardian cat. She is very conscientious about reminding me to take meds. It’s me who needs to remember what she means when she starts tapping me with her paw and meowing.