More than MS?

Although some snow was flying for part of the morning, spring is here. The courageous snowdrops by the door are old news and a solitary crocus and pinpoints of periwinkle tell me that we are truly moving forward in the season.

Many difficult conversations begin with a weather discussion—don’t you think that peculiar? When what needs to be said hangs heavy, waiting–until the talk about temperature, wind speed, and humidity is complete. And here is the part where my thoughts diverge: to tell what I feel or what I want to feel? My family would likely comment that I am a straight-shooter and not able to act a way that I don’t feel, so I guess my path is already worn.
Since January I have had 33 tubes of blood drawn. I guess the good things about that are: I didn’t come close to fainting, even when 16 tubes were drawn at once. Those were ordered by a rheumatologist that I had to see after having a strange thing happen to my toes. Let’s just say that there were spots, madly reddish-purple spots, with swelling and tenderness. The second good thing about having all that blood taken, is that I can say that with some swagger and elicit some great responses from an unsuspecting listener.

The kind doctor called last week, and immediately proceeded to tell me about my abnormal test results. Since my life’s objective is to FEEL BETTER (I have other objectives too, but if I can’t reach that one, then the others might be moot.), I was hoping that all those lab tests would show something that was an easy fix. I wanted a simple answer or a quick round of pills. But no.

The results indicated a type of auto-immune illness. (I don’t say ‘another’ because I am not believing fully the autoimmune theory of MS) The tests prompted the doctor to look at my last brain MRI and contact my neurologist to tell her that perhaps what has been labeled “MS” has really not been MS, but lupus. Lupoid sclerosis is the term she used– a kooky phrase that indicates a fusion of MS + lupus. My neurologist was adamant that my MS was really MS and that the lupus was just another diagnosis, separate. Like a bonus. But then there was more–a coagulation problem that indicates lupus, and adds a high risk of blood clots. It was then that I felt a bit like fainting, because, you see, I have a fear of having too many diagnoses to carry.

The blood tests have to be repeated in 12 weeks according to diagnostic protocol, and then, “We’ll see.” I am lingering in that land of waiting to see, but I am not a good waiter at all. I’m busy looking for other answers that don’t include more drugs (a favored drug for lupus is one that could cause irreversible eye damage). Mostly I’m trying to stay busy living, which, when done correctly, is the best revenge of all.





4 thoughts on “More than MS?

  1. Oh, Donna. I here ya. Boy do I here ya. I am annoyed for you and sort of happy for you (that you have some answers however irritating) and just plain, well empathetic. Frustration is the most common feeling I have had of late with my condition (currently “status migrainosus”). Labels and a panacea of drugs that may or may not work and may or may not cause other things to happen. It is all so incredibly complex. And then when we can just plain live, just plain overcome, for as long and as hard as we can muster . . . you are right . . . that is indeed the best and sweetest revenge. It is just that at times I feel it gets its own revenge.

    • Laurie, so sorry to hear that you are still battling the fury of whatever the name of ‘it’ is that they give to you this week/month. However it happens, life goes on. And then it goes on again, painlessly and perfect.

    • Thanks, for the thought, Anne. I think I will walk towards the Murakami ledge soonk even though I’ve had two negative lyme tests….were they the right ones? (titer) My hesitance twds lyme is irrational, but hey, this whole gig is surreal.

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