It’s been a year and four months since I heard the official diagnosis. I didn’t have fibromyalgia. I had Rheumatoid Arthritis.
At first, I was elated. It wasn’t all in my head! Finally, I had a diagnosis that meant medicines that worked! A plan could be put in place! I could get my life back on track, wooot!
Then I cried. It hit me. I had an autoimmune disease. That was lifelong. And there was no cure.
For the first six months, the focus was staying employed and dealing with the many doctor, physical therapy, eye, and God knows what else appointments that come with a diagnosis like this. I felt like I was giving away at least a pint of blood every few weeks. My SED rate numbers where super high. I was in pain all the time. I would cry on my way in to work, on my lunch break and then on my way back.
Good old depression was here to stay it seemed.
I started going to therapy weekly and that helped. Also, my Rheumatologist is awesome and has helped me get on medication that seems to be doing it’s job- lowering my inflammatory markers.
My job has been very understanding and my benefits are amazing. Seriously. I rarely pay a ton of money out of pocket. I love the company that I work for.
The next six months were me feeling better and attempting to get back to my manic pace of work. Plus parenting and being a wife. Oy!
That manic pace didn’t last long. My medicine failed and I had to start all over again with Enbrel. I learned that just because I’m on medication doesn’t mean life will return back to my old normal. I’m now making a list of things that can be added around our apartment to help me help myself. Like a rail in the bathtub so Costa doesn’t have to help me get in and out when I do my Epsom salt soaks. Or a special bottle opener so I can give my kiddo her bottles without having to ask for help.
I also have to have Tylenol and Salon Pas patches with me at all times. I keep Prednisone in my purse and a script on file at the pharmacy just in case. I have a space heater under my work desk, a blanket in my drawer and even more Tylenol.
Costa and I have been fighting about getting a new car, but I’m going to keep pushing for it (he doesn’t think it’s a good idea financially). Our little 2014 Nissan Altima is cute and 5 years ago would have totally kept me happy….but now it hurts to get in and out of it. When I sit on the passenger side, I have to sit at a funky angle to take pressure off of my joints. And I can’t get our kiddo into the backseat because it would require me to twist in ways that are not conducive to the pinched nerves I have running along my back. So in this case, finances < wife’s sanity! 🙂
I guess the biggest change has been mental. And it’s still a long work in progress. It’s hard being a Type A, overachiever to someone who has to remember to relax. To not stress so much. To not worry. To listen to her body even though she really, really, really doesn’t want to. To ask for help.
There are days where I get it right and days where I don’t. But this is my life now, both the good and the bad.