If I could highlight the whole article I would because everything you wrote about is I something I have either said, thought or experienced. It took 7 years of pain, fatigue, lord knows how much blood work, doctor appointments, trying this pill then that one, being told it’s I’m your head, I am drug seeking etc. to FINALLY get diagnosed with not 1 but 3 autoimmune diseases as well as a couple of co-morbid diseases, disorders to go along with it. I am NoT crazy, I am not drug seeking, I am not making this all up, just because the blood work came back negative for so many years does not negate the pain that I was in! ( I don’t know why this is in bold or how to undo it. New iPad).
But then I knew. Rheumatoid arthritis, fibro, peripheral neuropathy in my feet so bad I could hardly walk for a year, tarsal tunnel syndrome, hypothyroidism, you get the drift. I am only 45 and I now take at least 7 rx’s not to mention the supplements. Like you I still have times when I wonder why I have this, why me? No one in my family has this or can remember anyone having RA. We think my grandmother had fibro, but back then it was called “nerves”. My cousin has osteo arthritis and had a hip replaced at 48, but other than that it’s a mystery as to why I am so sick. Was it because I drank too much, smoked too much, am I a bad person? Did I bring this on myself? I use to be athletic, water skied, cheerleader, worked out 4–5 days a week and loved every minute of it. Now, if I have the energy to work out, I need a nap after and then I am sore for 3–4 days. Not your I just worked out sore, but whole body sore, so fatigued I can’t get out of bed. Add steroids and thyroid issues equals 20+ weight gain, I need to work out desperately, but I hold myself back for fear of throwing myself into a flare.
Friends, they try to be understanding, but when you have to turn down invitations so many times they finally quit asking. Or don’t understand why I can’t make plans in advance, go to festivals or concerts, stay out late and play like I did even a couple of years ago. It hurts my heart when my best friend says “your not the same kimmie I use to know” or tells new friends she is not the same as she was, we use to kick it and have so much fun! Or “There’s the Kim I use to know and love” if I am having a good day and feel like raising hell! That breaks my heart in two and pisses me off to no end! I can’t be that person anymore! For one, come on we are getting older and two one night out for me makes me feel like shit for at least 2 days minimum. I hardly drink anymore because it is not worth feeling shitty. This is a whole new struggle for me as of late. Now I really feel isolated and alone, so I read a lot and get on Medium. I keep telling myself I need to find some new friends, but it just seems like a hassle and I have a lot of baggage. And won’t even get into my career and how all of this has destroyed it.
As for the doctors and how they are frustrated because they can’t figure out how to treat you. I know that feeling and see it on a monthly basis with rheumatologist, however he is one of the most understanding Drs I know. I hope you have a dr like that and if you don’t, please find one. We continually work on a treatment plan, which seems to be ever changing. The only negative thing I can say about him is every appointment he says “ I want to see less of you next time” referring to my weight! Yea doc so do I, so do I.
Thank you for your writing and the one thing I want you to know is it does get better, just a different better. This is your new normal.