This is the first of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
In an earlier article, Four Words That Change Everything, I talked about how being told you have rheumatoid arthritis seems to change your entire world. For me it was almost a decade ago and while I don’t think I clearly remember the doctor’s appointment, I remember the feeling of being totally overwhelmed.
It’s easy to overreact.
After I exhausted myself reading all the statistics and horror stories on the Internet, I immediately started figuring out how to make my house more accessible for the wheelchair I’d soon need and stressing on how we’d live when I’d have to quit work and go on disability in a year or two. Then I’d buck up and tell myself that I was a fighter and this thing wasn’t going to get the best of me. Then I’d find myself looking at wheelchairs again and measuring door frames in the house. It was a true rollercoaster of emotions.
Finally, I got my life back.
A lot happened the first couple of months after my diagnosis. I was prescribed methotrexate which I immediately had to go off because I had my hip replaced. When I recovered from surgery enough to go back on a treatment plan, I refused to go back on methotrexate because of the side effects, so I moved on to a biologic. About two months later, I decided I couldn’t deal with my rheumatologist so I switched doctors.
With a new hip that didn’t hurt like the old one, a biologic treatment that brought relief, and a doctor that cared about me, I decided life wasn’t so bad after all. I have continued to work, to travel, to enjoy movies and books and good food and interesting people. After the first tidal wave of panic subsided, I realized that life is still pretty good.
I’d give a lot NOT to have RA.
But I have to tell you that having a diagnosis and actually putting a name to what was wrong with me was a blessing. Instead of bouncing from doctor to doctor and having pain and symptoms that continued to get worse – I had a treatment plan for controlling the disease. There was something I could do about it and people to help guide me.
The decision to live my life fully in spite of RA
So if I could go back and talk to me, I would tell myself just that. That an RA diagnosis is not the end of the world. It’s an opportunity to make things better. There have been a lot of challenges since my diagnosis and I know that there will more facing me in the future. But I have learned patience and resilience. I have a terrific medical team and the wonderful RA community to help support me through the rough patches. And while my life changed with the diagnosis, it’s still very much my life to live to its fullest.