As I sat down to write the latest installment here, I thought about Susan.
Susan is my friend who commented on my last post. I went to her blog so that I could highlight some of the information she shared. I was surprised to find a new post from her. Her last post was in May.
Susan’s story is nothing short of amazing and I highly recommend reading it in its entirety. I had let slip from my mind something very important from her story. She didn’t quit. She had every reason to quit trying to get a diagnosis and appropriate treatment. But, she didn’t quit. In fact, she took a very active role in getting to the root of the problem. Please read her story at http://chronic-connections.blogspot.com/2007/08/my-story-begins.html
For the past two days, I’ve been thinking I should call the whole thing off.
What has gone through my mind?
- I don’t want to get a muscle biopsy. It’s more invasive than I thought and if it’s like everything else, it won’t do anything for me anyway.
- I shouldn’t bother seeing my physical medicine doctor anymore. She hardly examines me and has no clue what’s wrong with me. She said yesterday, “We don’t have a name but we can try to treat the symptoms.” She also said my weakness is “much improved”.
- I don’t want to see a third neurologist. What’s the point?
Yes, I sound like a teenager instead of the grownup I am. I believe these feelings mostly stem from fear. The fear of being the boy (or woman) who cried wolf is a very real fear for me. I could explain right now, but I’ll save it for later.
Right now, I’m going to meditate. Well, my type of meditation. Sit quietly, focus on breathing, and read from my “Daily Book of Positive Quotations”.
Filed under: Uncategorized Tagged: | undiagnosed chronic illness
Keep going! I was sick for many years before being dxed with CVID (common variable immune deficiency) and Lupus in 2006. And just recently, I was dxed with Adrenal Insufficiency. I’ve been suffering from this latest dx for at least 4 years. I ‘m the one who suspected adrenal disease & asked my primary doctor to test for it. The endocrinologist I saw seemed confident that I did not have it. But he sent me in for the definitive test anyway – my adrenal hormone levels were very low. If my immune deficiency & lupus had been discovered years ago, I’d be in much better shape now.
Sharon
Ah! You have that muscle wasting/ chronic pain, too? Must be par for the course.
I’ve been getting labs and the run around for a while. My neuro-psych has me on Cymbalta, and it has been helping a little- but I am still working on finding the cause.
Good to catch you on here.
Sushi Thyroid