What do you do when there are no answers? I have been vocal about my struggle with autoimmune disease, if not only to vent, but to hopefully encourage other people dealing with these issues to communicate their frustrations. It seems that there are no clear-cut answers, at least there haven’t been for me and I’m not sure what to do at this point. I’m so frustrated with the practitioners I have seen in trying to manage these illnesses. I’ve been having symptoms since 2007 and have been to three different rheumatologists in my area trying to create an effective plan for improving my quality of life. I had to go to the Cleveland Clinic to get an accurate diagnosis and I’ve done so much personal research that I feel like I could open my own clinic and yet I still feel bad on most days. My most recent follow-up was particularly disheartening. I’ve been in this cycle since the middle of March and was hoping for some type of relief. I don’t expect miracles, but I am at least expecting to be given some hope… for light at the end of this tunnel. I got the usual, try a round of prednisone and call us in a week to see how you’re feeling. Been there, done that…numerous times. Prednisone makes me feel like a million bucks, but once I’m no longer taking it, I feel bad again. And, we all know that long-term steroid use is not the answer. Meanwhile, I’m waiting for my lab work to be read, which I could just do myself, to determine my level of inflammation. However, my labs are typically normal and these labs don’t ever give an accurate picture of how I’m feeling, which would seem to be the most important thing.
I explained to my rheumatologist that I tried changing my diet for a month, of course, that is overlooked/dismissed. I got no recommendations for massage therapy, supplement use, yoga, etc…which all seem to be beneficial for people like me. If I can’t expect my rheumatologist to recommend/discuss these things, then why am I there? Most of the time I don’t look sick or look like I feel bad, but who has time for that? I have to try to continue daily life whether I feel bad or not. This process has made me realize that if you don’t fit into a box of classic symptoms or look sick, you are often dismissed. I’ve been told to get more sleep (I get 7-8 hours a night, every night just as is recommended for someone my age), I’ve been asked if I’m experiencing stress (other than my rheumatologist visits being stressful, then no), I’ve been told to exercise less, but when I do that I feel worse. I’ve been told that since my joints aren’t swollen every day and I can bend over and touch the floor that I’m doing fine (of course I can bend over and touch the floor, I exercise daily and am only 38 years old). There has to be a better way to deal with these things and I should be able to count on my rheumatologist to investigate options with me. Every time I go, it seems to be the same outcome…I leave deflated and sort of hopeless.
My follow up is scheduled for 6 months from now and I’ve been shuffled over to the nurse practitioner. I suppose because he doesn’t know what else to do with me and it’s easier to just let someone else spend their 15 minutes with me. Until then, I'll continue my more holistic approach and work towards a better quality of life every day.
A less processed diet, essential oils, fish oil supplements, daily yoga and an occasional massage along with my medication should hopefully help things improve. Any other recommendations, please send them my way!