Tuesday, March 30, 2010

Won't You Tell Me How To Get There?

A friend and I were googling a disease that I was unfamiliar with. After we read all the squirm-inducing symptoms, we looked at the list of conditions that could be the cause, and Sjogren's Syndrome was one of them. She said, "Oops, you shouldn't have read that. Gonna sleep OK tonight?"

I laughed and said that probably five years ago it might have sent me into a worrywart panic. But back then my comfort level with autoimmune disease was much different than today. Which isn't to say that I have achieved zen like acceptance of it all. Yet.

But early on, I attributed everything from a hangnail to dandruff as being caused by SjS. It took awhile before I realized that sometimes a cold is just a cold, not autoimmune-caused non-specific pulmonary interstitial pneumonia. Or that back pain is just a pulled muscle and not transverse myelitis.

It's so hard to walk that line between overreaction and denial, or between hypochondria and total disregard for one's health. Somewhere in between, there's got to be a calm yet realistically alert state in which it's possible for a Sjoggie to assess those physical issues that are a daily part of dealing with chronic disease.

If you find that place, would you please let me know where it is? I'll save the location as a favorite on my Garmin.


Jenny P said...

I TOTALLY hear you. Personally, I feel like that's a major problem in my life - but in terms of my PCP! I seem to get doctors who (aside from not understanding almost anything about my condition, including how to pronounce it) want me to see my rheumie first for even a cold incase it's autoimmune, but naturally that's not realistic! I'm trying a new one this week, here's hoping!!

annie said...

I'm still reading up on sjogren's, as this is all still new to me, but I try not to read medical/health sites prior to bedtime, as I know it will start my imagination working overtime (as well as my nervous system). I've made the mistake of reading about anti-ro/ssa (what I test positive to), and I vow to stop. Ignorance is bliss in certain cases. I find dealing with the disease on a daily basis is easier than reading about it, so treat issues one at a time, and one day at a time, and try to remain calm.

stephanie said...

What works for me is that I do not read about SS or diseases. The more I read about them, the more I think about them, and I don't want to think about them as there are too many good things in life to thing about and focus on! If some health issue comes up and won't go away, THEN I look into it. Sure, I have had to make adjustments in my life, but so what? Everyone does along the way. There are people MUCH worse off them me in the world, so I am grateful for where I am.

Anonymous said...

That's so true ! Everytime I have something, a cold, an headhache, I have to think and ask myself : is it a side effect of my med ? Is it a new Sjogren symptom ?
Usually I list everything and ask the doctor at the next visit. Like now, I have ezema, well it's just an ezema. It's not Sjogren relate (but it itch anyway!).