Living With Rheumatoid Arthritis Almost a Year Later

People ask me about my Rheumatoid Arthritis. Most days I smile and say something to make them feel better, because really that’s why they’re asking.

I went from 60 to zero in a matter of days. I went from running, loping really, long distances to needing naps twice daily and being unable to uncurl my hands. I was fit and trim, and then inactivity and medicines left me bloated and queasy. The uncontrollable parts of it all makes me uncomfortable, and I sense it does the same for the people around me.

I’m almost back to being me. I’m a little stiff in the mornings, and I can’t exercise for more than two hours. I’d like to play a proper tennis match, but if I stop exercise after 90 minutes I seldom ache in my joints, when I pass 90 minutes my hands, hips, knees and ankles ache for 24 hours. I’m confident that this will change and I will return to proper tennis.

The Simponi saved my life. It didn’t cure me of Rheumatoid Arthritis, yet, but the results have been so fabulous that if this is as good as it gets I’m really happy. I’m still taking hydroxychloroquine and we may add back the methotrexeate or some other chemo, but for now the two medicines seem to be knocking things out nicely.

I exercise every day. I exercise partly because I’m a person that needs to move and it makes me happy, and partly because it’s an important part of living with Arthritis. I don’t take my motion for granted as I once did, and I’ve added yoga back into the mix. I also spend at least 30 minutes every afternoon floating in the pool. The absence of gravity is wonderful.

When it was clear that I had RA I felt my world crashing in on me. I thought it was the end of everything. Now it’s just a bump in the road.

 

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  1. I adore articles like yours that speak plainly and without pity about the realities of RA. Your story is authentic because it does not gloss over the pain nor does it get stuck there. I admire your courage for admitting, of all things, that your life has been improved by a TNF-inhibitor rather than hearing yet another anecdote about the ways the medical community has failed. I can relate to the “new normal” you describe while hearing the tacit disappointment that we aren’t the super women we used to be. Thank you. I imagine you still have a great swing during your 90 minutes on the court.

  2. I so know what you meaning. I have similar problems but am not really being treated yet beyond Celebrex. It’s not enough, I need more than that but the rheumatologist is unsure about the Dx because of my labs. Hugs to you and prayers for more good days. :)

  3. I’m glad you are finding yourself again in all of this. I have fibromyalgia, and there were times in my life (college was rough) when it was really bad, and times in my life where I didn’t feel the pain or exhaustion of it (pregnancy). The most frustrating for me is having the desire and motivation to get up and do things (clean the house, go out with friends, go to dance class, work on a project, whatever), but my body says “no.” Learning to listen to my body (knowing when it really means no, and knowing when I can push through the pain and fatigue) is a constant challenge and balancing act for me. I’m very good at having a “good day” and pushing myself way too hard, and finding myself miserable for the next few days as a result. My hat is off to you for finding that 90 minute limit and obeying your bodies needs. You’ll get your full game back, but even when you are able to play a full match, there will be days that your body might say “not today.” Those days can be hard, especially if you’ve been looking forward to having a fun day or accomplishing something you’ve been putting off. I have learned to use my fibromyalgia has an excuse to be spontaneous, and to let go of the guilt that comes with spontaneity. If I wake up feeling great, I might use the day to catch up on stuff I’ve allowed to pile up, or I might take that day to go do something fantastically fun and irresponsible. I hope you continue to feel better and continue to find the balance you need to feel the most like yourself while listening to your body’s needs. I’m cheering for you on and off the court!

  4. I’m so glad you write honestly and to the point about the realities of having RA including the medicines that we have to go through to find relief. 

    I know how difficult this past year has been for you and the fact that you didn’t let this become the end all to be all, is something to celebrate. I am very happy for you.

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