Friday, February 12, 2010
Life happens...it just does
As many of you know, this has been quite a week for me. It all started with my IVIG on Friday and the allergic reaction to the tape. I really thought I would bounce back but I think between that kicking my bad immune cells off and the stress of close family members with major medical isssues I don't think my system had a shot for this treatment. Pile on top of that day after day after day of snowstorms to deal with as a travel agent and boom...I'm down at the bottom of the hill.
I wanted to write this post to explain in a little more detail how this illness will effect me moving forward. Those of you who are nearest and dearest to me - and have still not figured out how to subscribe to my blog:) have responded to my struggles this week with grave concern. While I truly, from the bottom of my heart, appreciate the level of love and worry, I worry when you worry. I can't help it, it's just how I am, I am empathetic to the Nth degree. If I could remember back to my birth, I was probably crying because I was worried about the pain that the labor caused my mom.
Anyway, back to the reason for today's post. I know that the literature says that myasthenics can go into remissions and that treatment can manage the disease. This is all true. However, it is still a disease and management is a quality of life issue, not a cure. For example, two treatments ago I had a solid 7 day run of very mild symptoms where I felt near normal. It was wonderful and I am optimistic that moving forward this will be the standard result.
Unfortunately, this week, a little thing called life got in the way of stellar results. It is okay, I am not ready to throw in the towel or say that the treatment does no good. In fact, I am certain had this week happened without the treatment I would be right back in the hospital again. I can breathe, I can swallow, these are the two symptoms that led me to dire straits and multiple hospital stays. But that didn't happen this time, even though I had a horribly stressful week. So I became very fatigued - I can sleep. So in the evenings the double vision set in - I can rest my eyes. So my legs became weak - I have my walker (and they stayed strong enough to continue my physical therapy exercises).
So the moral of this post is - Life Happens. It can be boring, joyful, sorrowful, stressful, funny, exhausting, and whole host of other emotions. I love my crazy life. Does it sometimes get in the way of how I feel? Absolutely, but I bet it gets in your way as well, it just manifests itself in different ways. And without it there wouldn't be much of a story, now would there?
Lots of love...and optimism,