Wednesday, January 20, 2010

Today is a good day

Today I am happy, weak but happy. I just found out that my in home IVIG treatment will be covered by insurance and we can start on Friday as scheduled. This is good for a few reasons:
1. I will have two days to suffer the worst side effects of treatment before attempting to work
2. I will have the same nurse every other Friday, her name is Cynthia, same as my mother who passed from cancer in 2001 and my daughter. She sounds very nice and i like her name. All she does is IVIG so it should be night and day compared to the two hospital stays where the nurses admitted it had been years since they gave anyone IVIG.
3. I will not be exposed to other people's germs, after finding out I had the swine flu for the entire month of December I do not wish to get sick again. I know having young kids this is not entirely preventable but my immune system just can't fight stuff off right now. And to think back to how much I persued getting the vaccination...all for naught!
4. I get to relax in my house, in my pj's, and not worry about getting a ride after my 6 hours of treatment.

With that said, I am nervous about having treatment so often, I think my veins are shot from the four hospital stays I endured this year, but it really does help me. I couldn't open my right eye, swallow, or walk when I had my first treatment. Now I can do all of those things (most of the time) after my treatment and then a few days before I'm due for my next I start going downhill. The goal is to have it even out so I am having less and less weak days and I am very optimistic. I know this disease is incurable and has a mind of it's own but I think I am in the most capable hands. It only took three bad experiences to get there but considering the average time from symptom onset to diagnosis is 2 years and I did it in 6 months, I can't complain.

I was feeling so good the past week and then this morning my illness hit me in the face. The old familiar feelling of weakness that wasn't there when I went to bed last night was here this morning. I couldn't lift my arm to hit the alarm or open my pill bottle. Once my hubby got me a Mestinon I started feeling better but not like yesterday. It doesn't cease to amaze me how quickly I go from normal to disabled. Here is to treatment working.

1 comment:

  1. Hey Jen,

    I'm SO glad you found my blog! Yes, unfortunately, I have had this much longer than you...: ) Do you know if you are AChR+ or MuSK+? I am MuSK+. Mestinon never worked for me, neither did IVIG. I have to go to U of M every 3 weeks. Are you on any other medication? I'm on CellCept, and it has been a lifesaver for me. I am looking forward to getting to know you! What part of Grand Rapids are you from? Did you or do you have a neuro up there?
    Best wishes to you, and please keep in touch!