Being sick and being in pain is just one of the FUN AND EXCITING parts of having an autoimmune disease. But let's not forget the joy that can be found getting diagnosed and receiving treatment. Because you haven't lived until:
- paper is jammed in a not-so-pleasant fashion into the lower eyelid; the eye that is dry, no less, and doesn't want to be messed with
- a resident 'performs' a spinal tap, biffs, and you get poked again
- the headache that follows
- and the we just don't know what's wrong with you...
I could go on and on, but I don't want to brag.
Here's some thoughts after reading recent comments:
- The neurological symptoms are a big drag. They are considered less common, and I think, misunderstood. I saw a reputable neurologist and we still didn't come up with any answers. No one thought it was autoimmune, even with the positive ANA. Until. Until a high frequency showed up on a brain MRI. Even the doctor dismissed it, but followed through with more tests. I have often thought that if I had complained about my dry eyes earlier, we may have arrived at a DX earlier. But because my chief complaint was neurological pain, numbness, and fasciculation (twitching), I think it took longer. The neurologist referred me to the rheumy doctor - maybe that helped...
- I don't know where I was going with that...
- Another thing I've come to appreciate from both doctors -honest, however, vague answers.
Me: So, are my cluster/vascular/I-want-to-stick-a-key-in-my-eye headaches from Sjogrens? Is the nerve inflamed?
Doc: Maybe. Could be.
Me: Hey, I ache more than my Grandma. I'm sporting orthopedic shoes...Is this related?
Doc: Hmm. Maybe.
There's a pattern. I think it is because these things are tricky. They shape-shift (sorry to go all Star Trek on ya). Everyone 'does' it differently.
So like parenting, politics and religion, every one got a horse in the race.
I just pray my horse can get up and go.