Normalizing My Flares

RA Guy Adventures of RA Guy 16 Comments

big flareFor the past month, Rheumatoid Arthritis Guy wondered how he would share the news of the eventual return of his RA symptoms. For a while there, I tried looking into the future, and what I saw were blog headlines, Facebook updates, and Twitter messages declaring: “It’s official: RA Guy is back in a flare”.

The truth of the matter, though, is that I have officially been back in a flare since last Wednesday, and I decided that I would not make it such a fanfare moment.

Don’t get me wrong, I’m not in the least bit of denial…I accept what is going on and am reacting to things accordingly. I never thought I would say this, but going through this flare seems almost normal. And the best part has been that the things that I enjoy doing the most have gone on almost completely uninterrupted.

In the past, the act of bringing my forearm crutches back out of the closet was always a difficult one. I always felt defeated, as if I had not done enough to take care of myself in order to prevent the need for crutches. I now know that the speed with which all of the tendons in my feet can become severely inflamed is due to the nature of my illness, and is not a sign of how well I do or do not take care of myself.

On Wednesday afternoon my crutches were back in use. Although encountering mobility limitations is never completely easy, this time around it did feel just a tad bit easier. On Thursday morning I went and bought that new pair of forearm crutches that I had been eyeing since a month ago. With their sleek molded design and lightweight material, I now think of them more as a fashion statement and less as a sign of my mobility limitations.

I have no idea how long this flare will last, but compared to previous flares I can say with certainty that the severity of my symptoms has been less, and their duration (at least up to the moment) seem to be shorter. It doesn’t feel like my world has been turned upside-down; instead it’s sort of like I’m returning to a routine that may not be my favorite, but which I know from experience how to do well.

Yesterday afternoon I had my monthly appointment with my rheumatologist. He too noted that my flare did not seem to be as bad as my last handful of flares. He always answers every question that I have, and always asks me if I have any more questions to ask. I always leave his office feeling more confident than when I entered, and for this I am grateful.

My visit with my rheumatologist yesterday lasted 90 minutes. (No joke!) One of my questions was about the safety of long-term and/or higher-dosage corticosteroid use. (He is always very cautious about prescribing me Prednisone, and when he does it is always for controlled periods of time that begin to taper down almost immediately.) Out came multiple textbooks and rheumatology journals, and he gave me a thirty-minute lesson on the ins and outs of corticosteroid treatments for rheumatoid arthritis. I almost felt like I was in med school.

If this doesn’t qualify as empowering a patient, I don’t know what does.

Last evening I went to the annual book fair in the city in which I live. After walking around for about half an hour, my ankles and feet were in pain. I told my companions that I was going to go sit down in the coffee shop and wait for them – to please take their time in going through the rest of the fair. As I waited, I thought back to a few years ago, when I missed out on the book fair completely because I was in too much pain. It was then that I realized the great strides I have made in terms of living with RA. I am sure that my internal smile was visible to those who were around me.

I managed to enter this current flare without too much resistance or fanfare, and I think I’ll plan on exiting it in this same way. In doing so, I think I’ve found a way in which to make my flares just a little bit less disruptive. If they’re going to be a part of my life, I might as well get somewhat used to them.

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

Photo Credit: Big Flare! Creative Commons 2.0

Comments 16

  1. Vicki C

    thank you for reminding me that progress, not perfection, is the goal! 🙂 I needed this message today!

  2. Millicent

    In my 5th grade classroom I always posted this saying for my students, & I believe it with all my heart: “Attitude is a little thing that makes a BIG difference.” And another saying that I abide by: “This, too, shall pass.” Maybe they are both cliches, but there’s a lot of truth in them & they help me. I’m glad you’re smiling internally!

  3. cateepoo

    You have done so many wonderful things for yourself but this seems to be the greatest gift so far. Appreciating how far we have come is so important. It is easy to focus on the flares but a challenge to concentrate on the progress we have made while in a flare.

    Sending lots of healing thoughts to you today and for myself, a little smile as I think about how far I have come too.

  4. Helen

    I find when I am able to say to myself, “I feel awful right now, but I haven’t always felt this way and I won’t always feel this way in the future,” I am able to weather pain – physical or emotional – much better than I used to. Acceptance is such an important thing to do for ourselves, but it can be very difficult to get to that point. I’m so glad you are there!

    And it sounds like you have a fantastic rheumatologist. Sometimes I think that’s half the battle!

  5. ann marie

    that’s interesting… when i have a flare or a bad day i also go through this sort of unconscious it’s-my-fault thing for a while before i realize how i’ve been thinking, wake up and tell myself some more compassionate thoughts.

    you know what i think that’s about? (for me anyway…) my newer realizations about this illness and how i cope have to do with power and control. i’ve always liked to feel in control – i think most of us do, to a degree – and for me it was to a larger degree. and when it comes to situations like RA our ideas about control are called into question. how much power do we have over this illness? do we in fact have any at all?

    i’ve had this illness for 12 years and only in the past three or four have i really begun to acknowledge how sad and angry i am that i am forced to face these things that are happening to my body, these things that affect every area of my life and have asked me to let go of so much. and how little control i seem to have over the course this illness takes!

    i was brought up not to acknowledge my anger. i was supposed to be giving and accepting and positive yet no one could actually teach me these things because they only knew how to repress, not to surrender. now that i am learning to notice when i’m angry, i can deal with it and let it go. and that’s when the beauty of surrender is possible for me.

    thank you for your website. i’m new here and feel fortunate to have this source of connection and information.

    and you all seem so likeable and insightful and strong. cheers!

  6. magda

    thank you. I am just now going through the full diagnosis part of my RA and just started on prednisone. I too will blog about my journey from the beginning, partly because it helps, as a sort of catharsis and partly to let my son know how this was when he’s older and partly to keep the awareness out there! I never really knew much about this until just few weeks ago! Best wishes to you!!

  7. Laurie

    Thank you for helping us all see the light. Things aren’t always as bad as they seem or how we percieve them. Looking for the bright light in everything sure helps!

  8. Pollyanna Penguin

    I’m SO sorry you’re going through another flare, but I’m SO glad you’re coping with it so well. I must remember to come back and read this post when I have a flare! I want your rheumatologist though!!!!!

  9. Sharlane Billman

    RA Guy…..I love what you have to say and your whole site in general. Your drawings make me laugh (wheel chair episode!) and I can relate to you because my husband is also an architect and I know how hard it is for him to be restricted in his creative side. Fortunatley he doesn’t have RA. I am amazed at how you manage to have such good posts that are thought provoking, informational, and sometimes totally funny to boot. Thank you and hang in there with your most recent flare. Thinking of you. Sharlane

  10. Post
    RA Guy

    Thanks everyone for your kind comments. Sometimes I feel like the advances I am making are somewhat mundane, but then I see people’s reactions here on the blog and I recognize otherwise. I appreciate this.

  11. Linda Robinson

    RA Guy, I just joined today and read this piece. You sum up my feelings exactly. I am in a mild flare now after my Rheum. said the remission word 2 months ago. I had such high hopes that flares were behind me, but, I’ll deal. Rather than letting it get me down, I am staying positive and remembering how much worse I was before.

    I’m a teacher and there were days last year I couldn’r sign my name, so I had to buy a rubber signature stamp. This year, so far, my students don’t know I have RA. Like Milicent posted, “This too shall pass!”

    Thanks for all the inspiring posts and best of luck to all of you for a pain-free day!

  12. Jennifer

    I just came across this website and it’s so inspiring, I’m 29 year old female and I was diagnosed with RA when I was 24. Some days are better than others but the Spring and Fall really get to me when the weather changes. RA is something that runs in my family and it’s so nice to see others online just like myself!

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