A year ago, I didn’t know much about Rheumatoid Arthritis. What I did know, scared me to be honest. It has been a very challenging first year with this auto immune disease and I was also told I have Fibromyalgia on top of the RA. One year with Rheumatoid Arthritis has presented a lot of challenges and a lot of modifications.
A year ago, I thought I would start on some medicine and things would go back to normal. I would be able to return to my job, return to being active with my children and around the house, and be able to get back to building my career. Little did I know at the time, I would go through multiple medicines, still experience pain and fatigue, and have to completely re-arrange my life to accommodate this disease and get some sort or normalcy to my life.
In this first year, I have been on four different medicines. Three of them failed due to not helping with the pain and having horrible side effects for me. Some of those side effects I’m still dealing with such as the high blood pressure brought on by taking Arava. The verdict is still out on the 4th medicine as to whether it will work for me or not. The frustrating thing about all these medicines is that they take months to start working. I think more than anything, I have learned how to adapt my life to not overdo it and to keep my pain on the lower end. I’m also trying some natural remedies to help with inflammation to see if that will aid the medicine I’m on now.
It is hard to explain to people that aren’t aware of how RA works and it is also different for each of us. My pain usually occurs from over doing it with any one particular thing – standing, walking, sitting, typing, talking, etc. My pain normally is worse at night instead of the morning. When I explain to people that yes, I can do all that I use to, but only in small segments with lots of breaks for rest, they just don’t understand. I schedule my day around my pain and my fatigue. The fatigue usually strikes in the afternoon and the pain will start to get more as I go through the day if I do anything for longer than say an hour at a time.
Simple things like going to the grocery store wear me out. A trip to Dollywood with the kids will be short, less than 2 hours, and normally involve me napping on the way home and taking pain relieving medicine as soon as we are in the car to head off the pain that is coming from walking an hour or so. If I talk more than usual on a given day, my jaw will flare up and I won’t be able to hardly open my mouth. Makes eating a challenge sometimes until the pain subsides.
I never thought a year ago that I would be still battling the pain and fatigue. I never thought I would not be working and give up my career aspirations that I had before in order to take care of myself. My career field was stressful and stress makes my RA and Fibro worse so I can’t be in a stressful situation anymore or one that has little flexibility for rest periods, scheduling, etc.
I’m hopeful though that I will be better in another year than I am today. Surely, I will find the right combination of medications and lifestyle modifications that will allow me to get back to living life instead of always focusing on my RA. One thing that I would like to point out is that coming up on February 2nd is a day of awareness for Rheumatoid Arthritis. We need to find a cure for this disease and better treatment options. I hope that you will participate on February 2nd and show your support for those of us living with Rheumatoid Arthritis.