Taking Care Of Myself

RA Guy Adventures of RA Guy 17 Comments

Today feels like one of those “pivotal” days, probably because–as I will explain in a while–this day is inextricably linked with some of the days that followed my diagnosis of rheumatoid arthritis, many years ago.

As I started my day by going to the lab to get blood drawn so that my rheumatologist could establish my new baselines, and as I finished my afternoon with another session of physical therapy, I couldn’t help but feel how “normal” all of this has become. It used to be that all of my medical appointments and all of my rest breaks would get squeezed in between all of this other things I had to do. Now I know that there are many other things that I’m still able to do, especially when I’m having a “good” day, but by and large taking care of my body and taking care of my (physical and emotional) health has definitely become something which I now perform on a full-time basis. It has, in way, become my job.

I am a year and a month away from turning 40. As I look around to many of my classmates who I graduated with from Columbia and Harvard, I see a lot of executive titles, industry leaders, and high-paying jobs. It used to be that I hated having to spend so much time on my health care, and I hated that over the past decade my career continually had to play second fiddle to my health. (I recently saw someone write something along the lines of “you know you have RA when you too sick to even telecommute!”)

Now, however, I’m on the opposite end of the spectrum: I’m grateful that recent lifestyle and work changes have allowed me to prioritize taking care of myself, above everything else. Yes, my career has suffered, as has my money-making potential. But in the end, I’ve achieved something which has no price: I’ve somewhat successfully figured out (even though there continue to be many speed bumps along the way) how to live with this painful and debilitating disease.

Years ago, soon after being diagnosed with rheumatoid arthritis, I was prescribed methotrexate. At the time, I certainly wasn’t ready to accept the fact that this illness with which I live was chronic. Looking back, I also don’t think I was prepared to take such a powerful drug. I wasn’t even aware of the fact that I should take omeprazole an hour before taking my stronger medications; something which is now a given, but back then I was a complete newbie. (While Superman gets abs of steel, I’m left with a stomach that seems to be made of tissue paper.)

Later this evening, I will once again start taking methotrexate. I think this is why I’m in such a pensive mood at the moment…because while the act (taking a few MTX pills) is the exact same thing that I did at the start of my RA “career,” everything else about my situation is completely different…and being able to make some of these connections between the past and the present allows me to see exactly how far I’ve come over the past years.

I’ve accepted what I have. I’ve accepted what this means. I’ve accepted this will never go away. Such simple words, words which will never be able to accurately communicate just how hard it is to reach some of these levels of acceptance.

I’ve also accepted, though, that the most important thing for me to do is to continue to take care of myself, above everything else. And as I return to taking methotrexate later today, this is exactly what I’m going to be doing.

I’m going to be taking care of myself, as best I can.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 17

  1. Tina Tarbox

    Even though I’ve had RA since I was a child, I didn’t really learn to nurture my health and well-being until I was in my thirties. At least we have both figured out what is most important in life. That’s a lesson some people never learn (although I’m not necessarily a fan of how/why we learned it). I hope your first dose of mtx goes well.

  2. Katie

    Good luck. I’m a couple of months on methotrexate and I find at the moment I’m flipping between dispair and acceptance I hope to reach your level of acceptance soon thanks for sharing

  3. abcsofra

    I hope that this medication will help you ra guy. If anyone deserves it, you do. And, this second time around, you are alot smarter, more informed and able to leap tall buildings (yes I know only in your mind of course). But you have so much more power now then before. Time is on our side in that respect as it helps us to gain knowledge, patience, and perserverance. Wishing the best with this new medication.

  4. El

    Good luck to you on this round. 🙂 It took me a long time to “do” anything about the “cRAp” running around in me. I really didn’t know a lot about this lovely thing until about 7 or 8 years ago. (Ignorance is bliss?… :\ ) Even though I’ve had it for about 24 years now. Anyway, I hope that you get relief and feel better. Take care. El 🙂 p.s. Love the blog and I think you tried to friend me on FB one time and I lost the email. I am gonna go back and try to find it soon. 🙂 Right now, too shot to sit here on this thing anymore tonight. 🙂 🙂

  5. Marcia

    RA Guy – you’ve come a long way and I pray that MTX will be more of a friend to you this time around. You have developed much self-awareness, and RA awareness, since your journey began. You’ve come not full circle, but rather you are on an upward spiral in terms of personal and spiritual growth. RA is a hard taskmaster but if you allow the possibility (and I’m sure you do) that your MTX experience will be different this time around, there are untold benefits to your experience. And, in Buddhist terms, it’s just another turn of the wheel. Blessings to you!

  6. Cathy

    My thoughts are with you tonight. For me taking medication has always been a difficult thing to do, but in the end, has helped me tremendously. I hope many times over that the same is true for you.

  7. Linda P.

    Two weeks ago, my rheumatologist added diclofenac to my Enbrel plus Plaquenil regime. Somewhat wistfully as he was discussing the pros and cons, I remembered that before a first major flare in October, 2010, I took no medications. I had been resisting any medications such as diclofenac because I could handle the pain that came along with the inflammation . . . I thought. I didn’t want my body to have to deal with any more medications than were absolutely necessary for me to function. My rheumatologist told me that he had better hopes for me than the recovery that I had been able to achieve so far. Somewhat sorrowfully, I agreed. Suddenly, I could sleep better at night and had more energy during the days. After this two-week period, I realize that dealing with the pain and inflammation was taking a bigger toll than I had imagined. I wasn’t being heroic and stoic, as I had imagined. So, I can certainly empathize with all the different factors you’re weighing and hope you find the solution that works for you.

    Also, I wanted to say that, although I would not wish this disease on anyone, if your life had taken the track for which it seemed destined before this illness hit you, you would not have made the discoveries you have made, this blog would not exist, and I would not have found great comfort, succor and information. You have made a difference in my own adjustment.

  8. Lyn Burnstine

    Good luck. I’ve been on it for decades, and, except in the beginning when my then-rheumie didn’t know to give me folic acid for the mouth sores, I have no bad reaction at all to it, not even fatigue or weakness that some people talk about and that I think I remember from 25 or so years ago.

  9. Brooke

    I relate when it comes to career. Career and moving up was my sole focus for so long that when RA started to hold me back I felt as though I didn’t know who I was without my “career”…something I am working on accepting. I read a quote today that, although somewhat depressing, actually made me feel better: “If there’s no solution, there’s no problem. If their’s no solution, what we’re dealing with is a fact of life that we haven’t yet accepted” Steve Chandler, Reinventing yourself: how to become the person you’ve always wanted to be.

  10. Gillian Pidler

    Hi RA guy, best of luck for your return to the mtx. It has been my ‘friend’ for around 16 yrs now, first on pills and the last couple years on injections. I dread to think where I’d be now without this drug that I hate having to take, I have to remind myself each week when I inject the yellow substance to look at the bigger picture.
    I never had a career as such, I’m a Mum of 3, dxn early on in my second pregnancy, but when my eldest started school I got a little part time job at her school which I did for 13 yrs. I loved every single moment of that job & was heartbroken when I had to let it go, thanks RA. But on the flipside of that I now have the gift of time that you speak of, to put my health first and take care of me. I have time to start my day slowly & if I’m doing ok for spoons I do my yoga practice, then any jobs that need doing are done through the day as I’m able. I spend a lot of time resting & recovering from the things I have to or choose to do, but as we all know that is an important part of caring for our bodies. Wishing you luck xx

  11. Carla

    Best wishes to you on your new treatment plan. I hope that it helps relieve the flares and the terrible pain you’ve been experiencing.

  12. Natasje van Niekerk

    I feel your pain. Me first is hard… I just took up studying full time. I’m feeling it’s toll in my jaw.

    I love your blog, and I would really like to subscribe… in case I forget to read it. I forget to brush my teeth and wash behind my ears, so… It happens.

  13. Joanna J aka Lemon-Aid

    I’ve taken MTX for several years and STILL need a moment before taking those little yellow pills each week. But, I know it has been a significant help so I stick with it. And even though it gives me pause, I’ve learned to meditate and calm myself so I don’t get too stressed about it.

    I pray the return visit to this med is successful and meaningful to your wellness.

  14. Derek McNamara

    I got diagnosed with RA a year ago at age 19, my life has turned upside down. Before I had dreams and was on my way of becoming an Air Force Officer but then 6 months after I begun to feel symptoms and many medical test later I was diagnosed with RA. I was promptly kicked out of Officer Training School, the full gravity of what I have dealt with in regards to this disease did not manifest itself until about Christmas where I have been more or less forced to rely on my parents to help me with all of the menial things in life that I used to be able to do. I think I am at the point where I have lost hope and mourned over the death of the old me…and now reading your post RA Guy, it just sinks to me to new lows (Not about that you have come to your own peace about your loss)but that I am going have to accept the fact that I might not have a career because of this damn disease. I am beginning to ask myself the question, is life even worth living anymore?

  15. KellyRH

    Good luck with the MTX, I will be praying that all goes well as you start back on the meds. I have been on MTX three weeks tomorrow and I have not had any negative reactions, but the pain is not abating. Guess at the next appointment my doctor and I will be talking about uping the dosage or adding something on.

    I am new to RA and your blog, but wanted to thank you for your posts, as they are helping me through my frustrations. I am frustrated that I am unable to do what I could two months ago. Your journey gives me hope that as I move through my future with RA that I can find peace.

    Again, prayers for a good outcome for you on the MTX.

  16. Kate@Cooking with Arthritis

    Good luck with it and hope it helps. I really didnt thing it was helping me but was taking it with Humira, funnily enough when I came off it, I had a massive flare. Which is a long way around of saying, sometimes these drugs feel like they aren’t doing much, but hang on in there as they might be!

  17. Erika

    I just found your blog today and I’m so impressed with you attitude. What an insightful and inspiring post!

    I have psoriatic arthritis and I have always felt the same way – that no one can know better than myself what is right for ME. I am so thrilled to listen to your heart-felt feelings and experiences.
    I am currently on the opposite path as you, just ending a 4-year stint with pharmaceuticals to explore the amazing options available through altenative therapies. It is a joyful journey, and it is what is right for me right now, at this time. But it wasn’t always so, and who knows where the future will lead.

    Thanks so much for your courage, confidence and strength. What a wonderful example you are to others facing chronic illness.

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