What is WRONG with me?
A preliminary report came back from Stanford. My radiation oncologist mentioned part of it to me so I came home and emailed my rheumatologist. He wrote back that he was going to have the pulmonologist call me. She called, said she had to call Stanford for some explanation of their report. She went on about all these conditions, etc. ANd, told me to stop taking prednisone. I'm sorry, what? The lesser does makes me feel worse, I was feeling better on the higher dose and now you want me to stop because you say it's not working?
I emailed my rheumatologist again, asking him if I should, in fact, stop the prednisone. Last I was told I couldn't just stop taking it cold turkey because it will make my adrenal glands a bit wonky and I'll be sick. Oy vey. What the frick is going on? So is it not Wegener's? Is it something else? What the hell!? I feel like I am back to square one, not having any idea why I feel so horrible.
I honestly want to cry. I don't know what's wrong with me, I can't seem to feel better. I've been coughing for almost 4 months. I've never had a cough this long. The sinus pain is back, my ears hurt, everything from last year with the fun addition of the crappy cough. I am mad as hell, fed up with feeling crappy, pissed off that I thought we had some answer and now we don't have an answer at all??
If I get to taper off prednisone ... fine, I will. I desperately want to eat less. But, I felt better when it was a higher dose. I didn't know it at the time but now I do! I was doing better than I am now.
Seriously, I don't even know what else to say right now. I'm angry, confused, puzzled, ... this is my health. If it is Wegener's and I don't treat it ... it could be bad. If it's not, GREAT! I don't want to have a lifelong, life-threatening autoimmune disease. I am sure there is a better alternative to that. But, I don't see why I would still be this sick for this long with no answers. Everything lined up for Wegener's. My ANCA blood test, the symptoms, the granulomas in my lungs. OMG this is all so frustrating. I just want to scream!!!
I'm still waiting to hear back from the doctor. I hope to hear from him before I'm supposed to take my next dose of prednisone. I usually take it around 10am so ... there's still a chance he can email me in the morning.
I even only wrote 1000 words today because I just don't even know anything right now. I feel like I'm in yet another holding pattern, still with no answers, still with no end in sight.
I quit. I tell you. I quit.