Skip to Accessibility Tools Skip to Content Skip to Footer

No. 1 – The Diagnosis

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.

Feeling overwhelmed after diagnosis

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.

My life after an RA diagnosis

Methotrexate, a new hip & switching doctors

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.

Continuing to live my life

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.

The closure that diagnosis brings

A treatment plan for RA symptoms

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.

Accepting the challenges ahead

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 be 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Carla Kienast author
    2 years ago

    Hi RockCandi: Thanks for your comment. First, I have to say that I loved being on Xeljanz while it worked for me. (I’m what’s known as a “refractory” patient, so things tend to quit working for me.) I’ve got my fingers crossed that it will work for you as well. Second, and more importantly, thanks for writing in and telling your story. I’m glad that my story and others shared here have helped you. I think community is a critical tool in managing this disease. I hope you’ll come back and update us. And remember, we (and I) are here if you need us!

  • rockcandi
    2 years ago

    I love your positivity Carla (yours too Rick)! I was the same way for a long time about the going back and forth from telling myself I didn’t have to settle in and allow the disease take over my life to going into the specialty section at my pharmacy and checking out walkers and special shoes and utensils. I’ve had JRA since the age of 6 but after a period of remission started by age 7 it was ignored by mom and in turn by me. (Even though I always knew something wasn’t “right”.) Then I had to take on the 13 year battle to get rediagnosed as an adult. By the time I got the diagnosis of JRA and Lupus at age 30 I was relieved to put names to what was going on (even though I was pretty convinced that I had RA) and to be able to start treatment. It’s been an uphill battle to find the right treatment. Now at age 36 my rheumy and I had found something (Actemra) that was helping “a lot” although I did have to go back on MTX in addition, but then in Jan my insurance stopped paying for the Actemra. And since I knew that MTX shots alone wasn’t going to work well enough to have to deal with the horrible side effects, I stopped it too. Now were going to try Xeljanz, although she seemed only to be trying it to appease me and didn’t seem as if she believes it will help. She says if it doesn’t work we are going to have to stop trying to avoid infusions. (The only reason I’m willing to try one more thing before infusions is simply having to have my husband miss work once a month to drive me over an hour away from home to the center where my rheumy and infusion site are located.) Anyway, I’m thankful to you for sharing some of your story and helping me to remember to stay positive. Just bc I have these diseases doesn’t mean I AM these diseases! Just bc I have to make modifications to my daily life doesn’t mean I have to stop living my life!

  • Lawrence 'rick' Phillips moderator
    2 years ago

    I would tell myself, to remember to always be thankful. Not thankful that you have RA, but thankful you made it as far as you have in 1999 because you never expected to get this far. When you remember to be thankful, nothing else will get in your way.

  • Poll