RA Kryptonite

RA Kryptonite

There are times when I feel on top of the world: capable, effective, useful, powerful. In these moments, the future feels full of possibility and I feel able to turn those possibilities into reality. It’s a wonderful feeling, almost like I’m Superman. I love my super hero days.

My weakness? A traitorous immune system

However, you’ve already read the title of this article and you are reading a site for rheumatoid arthritis/rheumatoid disease (RA/RD), so we all know where this is going. Every superhero has his/her weakness, and for this Superwoman, my weakness is a traitorous immune system coupled with a fierce desire to ignore my limitations. RA/RD is my kryptonite.

I’ve had a very busy spring. I work full time, I have two young kids, I’m on the board of a non-profit organization, I’m on our school district’s parent advisory board, and I’ve been on a campaign team for a friend running for the board of education. The past several months have been packed with meetings, conference calls, canvassing, public events, a benefit concert I organized, and all those frenzied early mornings to get the kids and myself out the door to school and work and the hurried evenings of getting the kids fed, bathed, and read to before I pass out myself.

Just reading that feels exhausting, but the reason that I do it is because I love to collaborate with others to try to create needed change. I get a high from putting my head together with others to come up with ideas for increasing awareness and implementing changes for kids in our community. When I am a part of these types of teams, I do indeed feel like Superwoman: I feel a deep sense of purpose and capability; I feel powerful.

It’s that feeling of camaraderie and accomplishment that leads me to over do it time and time again. While this spring has been full of invigorating connection with others and wonderful mini-victories, it has also been full of sickness and joint pain. I’ve persisted because the campaign is time-limited, and win or lose, one of my obligations will soon evaporate. So rather than listen to my body, I’ve kept trying to push myself to the Election Day finish line. Yet that RA/RD kryptonite keeps coming out to remind me that I am human, not a superhero, and that I am a vulnerable human at that.

RA kryptonite works in many ways. It makes me feel heavy with a deep, persistent fatigue. It makes me feel weak with the effort required to hold a toothbrush, a cup of coffee, a purse, or even the weight of my own body, as that effort feels enormous when one’s body is riddled with pain. RA kryptonite makes me feel slow as I walk at half pace, take stairs one at a time, and stop for breaks between tasks and naps between outings. I would say that RA kryptonite brings me to my knees, except that would be far too achy; rather, RA kryptonite brings me to my back.

While I hate kryptonite, I must stop denying its existence in those moments that I revel in being Superwoman. When asked to take on another endeavor, I need to stop and say to myself, “Yes, I really want to be a part of that, and yes, I have a chronic condition that is going to flare up if I overdo it.” Sometimes the equation is yes + yes = no. While the temptation to be a superhero is very strong, so are the powers of my own personal Krypton: RA/RD. While flying sky high as Superwoman feels wonderful, being rendered useless by RA kryptonite always seems to be the price I pay when I wear myself out. It seems that living a human life on Earth is the healthiest compromise.

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

View Comments (19)
  • DianaBG33
    7 months ago

    I can so relate to your kryptonite story. I too was Super Women/ Wonder Woman but I had my artifacts- a cane, wrist guard, shoulder stabilizer, and hot and cold packs at work. I kept telling myself I wasn’t going to let RA control my life.

    So I’d push through- but I paid for it in pain and limited movements. I even tried to make light of the flair up to suggest some grand adventure went awry.

    Looking back I don’t think I’d change things but I tend not to focus on the difficulties of the flair- up. Kytonite be damned!

  • Tamara Haag moderator author
    7 months ago

    Thanks so much for sharing DianaBG33! It’s helpful to hear your experiences and perspective. Wishing you all the best, Tamara

  • jhundley2018
    8 months ago

    You are doing amazingly well. I am 72 still working in schools coaching principals. Pain was taking me down just like you described. Yesterday I went back to two Alcats I have taken in the past and ate only my food both said were ok. Last night I slept and this morning less pain. I will continue this path plus yoga I did last night. Could only do half of cd but will try again tonight. I will pray that your “kriptonite” subsides.

  • Tamara Haag moderator author
    8 months ago

    Hi jhundley2018, Thanks for your encouragement and kindness and for sharing your experience! Being 72 and continuing to offer professional development with principals while having RA is quite a feat! I am glad that you are finding some things that bring at least some relief, and I hope you feel much better soon. Thanks for being in our online community, Tamara

  • jeg1949
    8 months ago

    I really enjoyed that read. I have those same kind of days and I push myself way to hard. It’s really bad when you crash!

  • Tamara Haag moderator author
    8 months ago

    Hi jeg1949, I’m so glad that you found it to be helpful! This is such a tough disease, but I do find that knowing other people have similar emotions and frustrations in response to RA is helpful. Thanks for sharing your thoughts! Gentle hugs, Tamara

  • johnscott
    8 months ago

    Such a wonderful piece and much of which I recognise in my own situation. One funny thing in your article, did you know of the liquid bone used by orthopaedic operations is actually know as Kryptonite! Really look it up!

  • Tamara Haag moderator author
    8 months ago

    Hi johnscott, Thanks for the compliment and for sharing. And no, I had no idea that there’s a medical orthopedic product called Kryptonite – too funny! Thank you for sharing that. Wishing you all the best, Tamara

  • MayteR
    8 months ago

    Wow, thank you so much for this! I was just recently diagnosed as well, and I, as well as my family is shocked by how much this has slowed me down. I’m really having a difficult time coping with NOT being super woman. I am blessed to have a super supportive husband and grown children, but still, I almost feel “guilt” for not being able to do what I used to. Reading this really made me feel a little bit better.

  • Tamara Haag moderator author
    8 months ago

    Hi MayteR, Thanks for sharing! The first year after my diagnosis was such a hard time for me. Please know that we are here any time you have questions, comments, or experiences you want to share. It’s difficult adjusting to life with this disease, but I’ve found that it does help to learn and share with others. As you mentioned having a supportive spouse and feeling guilty about your loss of productivity, you may find this article helpful: https://rheumatoidarthritis.net/living/love-letter-supportive-spouses/. It’s a love letter written to supportive spouses, and mentions that guilt. Remember, you are doing the best you can and you didn’t ask for this disease (I have to remind myself of that all the time because I frequently feel guilty as well). Wishing you all the best, Tamara

  • lisaqo
    8 months ago

    You said it all when you said, “yes + yes = no”. That is the toughest thing to remember. Balance. Thank you Tamara!

  • Tamara Haag moderator author
    8 months ago

    Hi lisaqo, I’m so glad that this was helpful. Thank you for sharing your thoughts. It helps to know our struggles are shared, so thank you for sharing that you contend with this one as well. All the best, Tamara

  • swise85
    8 months ago

    Sorry disregard that last message. I just seen the rest of your response. Thank you very much.

  • Tamara Haag moderator author
    8 months ago

    You’re so welcome! Please continue to let us know any time you have any questions. Take care, Tamara

  • swise85
    8 months ago

    Thank you so much! What is the Facebook page called?

  • swise85
    8 months ago

    I love this! You have said it in the most amazing way. I was finally diagnosed with RA in January of this year. I have had symptoms for at least 9 years but doctors told me I had bursitis. I had some major flares last fall and did some research. Within that I found out RA runs in my family. I went to my FP and asked to be tested. Of course my RA factor showed that it was a possibility and then I was sent to my now Rheaumatologist. I love your post and couldn’t have said it any better myself. Would you mind if I share your post to FB. Many of my friends and family have a hard time understanding what exactly RA is and how it makes me feel.

  • Tamara Haag moderator author
    8 months ago

    Hi Swise85,

    I’m so glad that you found the article to be helpful! Yes, please share any of our articles on Facebook, as spreading awareness of what RA is and how it impacts those of us who have it will hopefully help others understand a little bit more about what it’s like to contend with the challenges of RA. We also have a Facebook page: https://www.facebook.com/RheumatoidArthritisDotNet/ where our articles are posted as well as reader comments, so that may be of interest to you.

    I’m sorry you’re contending with a recent diagnosis, but hope that with it will come treatment options that might actually help after the years of misdiagnosed symptoms you’ve been dealing with. Please know that we are here any time you have questions, comments, or experiences you’d like to share. It’s a tough disease, but we are in this together to learn and share and cope with others who know what it’s like.

    Wishing you all the best,
    Tamara

  • Richard Faust moderator
    8 months ago

    Hi Swise85. Please feel free to share the link to the post. It is great that you want to get the word about RA out there. You may also be interested in this video Tamara made on things she wishes everyone knew about RA: https://rheumatoidarthritis.net/video/ten-things-i-wish-everyone-knew-about-ra/,

    Sorry that you had such a struggle to get a diagnosis. It’s a good thing you were such a strong advocate on your own behalf and not afraid to go to the doctor with what you had learned. Now that you have the diagnosis you can get on the path to a proper treatment regimen. As someone new to RA you may be interested in a series one of our other contributors did on things she would tell her newly diagnosed self. Here is the first one on receiving the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/.

    Please know that you are always welcome here for information and support. Wishing you the best, Richard (RheumatoidArthritis.net Team)

  • swise85
    8 months ago

    Thank you so much Richard

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