9 Things I’ve Learned About Exercising With RA

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1. Upon increased use, muscles that have been inflamed and/or infrequently used are usually going to hurt more before they hurt less.

2. It’s essential to be able to distinguish between pain that results from muscle soreness, and pain that results from incorrect or overloaded use of the joints.

3. When starting an exercise routine, it’s critical to implement new movements very, very gradually; a body that has been ravaged for years needs plenty of time to recover, heal, and strengthen.

4. Personal trainers with physical therapy training are worth their weight in gold; they can help a person with rheumatoid arthritis modify exercises accordingly and reduce the risk of injury.

5. In addition to the commonly acknowledged benefits of feeling better and looking more fit, muscle strengthening and weight loss also help arthritic joints move around with a little more ease.

6. When I’m flaring I still go to the gym, but I make sure to limit myself to extremely gentle stretches and exercises. (I find the atmosphere of the gym to be very therapeutic, especially when I’m at my worst.)

7. Consistency is key.

8. There comes a point where regular exercise actually helps reduce fatigue. It sounds strange, I know, but it’s true. (And multiple studies have affirmed as much.)

9. Our bodies are capable of amazing things.

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

RA, Feelings Of Shame, And Strength

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Rheumatoid arthritis can often cause us to feel ashamed: ashamed of moving with difficulty, or of walking with a mobility device; ashamed of not being able to contribute equally around the house, both time wise and financially; ashamed of needing extra support to fight the demons of depression, and so on.

When such feelings arise, it’s important—and absolutely essential—to remind oneself that while many people have no idea of the challenges we face on a constant basis, there are indeed others who understand what you’re going through, and who know firsthand the absolute strength that is required to live and cope with this disease. Don’t ever forget, you are not alone.

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


Who Am I?

RA Guy Adventures of RA Guy 9 Comments

Chronic illness, pain, and depression have a tendency to rewrite our personal identities, quite often against our will.

Sometimes this redefining takes place on our external surfaces, where others can see: a small limp in our left leg, which is compensating for an inflamed knee, or a new cane or set of crutches. Yes, the mind knows that using these mobility devices is in a person’s best interest, but the heart still can’t get over the new stares that one receives while walking through the store, or to the still-foreign reflection in the mirror.

Other times this shift in identity is caused by lumps of hair that start to waft around like dandelion tufts in the wind, a result of the medicines that we sometimes take in an attempt to find something–anything–that might slow the progression of our disease. “Don’t be so vain,” some people (including myself) might say, as the tears start to fall at an even faster clip than the hair from my head. “Why does this bother me so much,” I ask out loud–“I have shaved my head on multiple occasions, and loved how I look.”

And then I it comes to me. What’s bothering me is that this change in my physical identity is being done against my will. It doesn’t feel like a choice; it feels like a heavy imposition.

The biggest changes, however, usually come deep down inside where no one can see, other than ourselves. (Sure, other can see our change in persona, and can see how the chronic pain seems to be eating away at us, inside and out…and we often ask ourselves, in desperation, why can no one see what this is doing to me? Though if we are honest, we would have to admit that there are times when it is way too scary to look at ourselves, even though we’re the ones living with this…)

And as with many other things, the harder we refuse to allow it to change us, the more it eventually does.

Two years ago, when I reached rock bottom, I felt like no one, like nothing. I no longer knew who I was; I had no idea what the future (or what the rest of the day, for that matter) had in store for me. I started feeling like a ghost walking amongst others in the crowd–my presence was still slightly detectable, but I wasn’t really there. The pain, the immobility, and the vision loss continued to smother me, and my reality was no longer an issue of low self-esteem. It was a matter of no self-esteem.

I was now operating with a blank canvas…but as any artist will tell you, a blank canvas is meant to be filled.
I have since learned, though, that this bleak experience was actually a wonderful opportunity in disguise. Yes, my pain and disability had taken away so much of my sense of self, that I was now operating with a blank canvas…but as any artist will tell you, a blank canvas is meant to be filled. The beautiful thing is that this time around, I was able to re-build myself, and re-define myself, exactly as I wanted. Instead of spending precious energy on the Sisyphean task of trying to make my rheumatoid arthritis go away, as I so often did over the past decade, I was able to paint it’s presence into my landscape, and to see the happiness, and self-awareness, that it has bought into my life.

I now wake up every day, knowing I have become exactly who I’ve always wanted to be. I look back at the journey that bought me to the present, and I know it wasn’t easy; I also look into the future, and know that major challenges will inevitably continue to appear on my path. But I am okay with that, because I now know who I am.

Thanks to my chronic illness, I finally know who I am.

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

Hospital For Special Surgery: Share Your Story

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closed doorsTwo years ago today, I was in the midst of an extended stay in New York City. (Even though I am a U.S. citizen, I’ve been residing in South America for the past 10+ years.) The reason for my visit: to go to the Hospital for Special Surgery in the hopes of receiving a new treatment for my rheumatoid arthritis, which had spun out of control and which was no longer responding to the pharmaceutical treatment options that were available down here where I live.

I have since opened up about some of the many challenges that I faced during this period, when I reached rock bottom. What I haven’t spoken much about are the details of what actually took place, when I walked into this hospital looking for something — anything — that might be able to help me.

My primary reasons for not sharing my story were twofold.

First, I was so shocked and hurt by what happened that immediately upon returning home, I scheduled numerous sessions with my psychologist in order to work through the emotional pain of what took place. I knew that I’d probably reach a point when I would be ready to publicly talk about what happened, but that until I then I didn’t want to write words that might seem to come from a place of anger. (My rheumatologist, who has been treating me for years, actually started trembling when I updated him on some of the things that had taken place — that is how upset he was!)

Second, I met many professional and caring individuals within this healthcare center — nurses, lab technicians, and support group coordinators, that I didn’t want to paint the entire institution with one broad brushstroke. As is the case with most organizations, one will find good, caring people and one will find, well, let’s just say…the exact opposite.

I’ve reached that point, though, where I am ready to share.

I share my story because I think that by doing so, I will finally be able to gain some closure on what ended up being one of the worst experiences of my life. I share, because I hope that these words might be able to provide some support and encouragement to individuals who currently find themselves, or who might one day find themselves, in a similar situation. I share, because a reporter from a major international newspaper recently encouraged me to talk more about some of the challenges that I’ve faced while trying to receive healthcare. And I share, because just a couple of hours ago I received an email from the Hospital for Special Surgery, asking me to share my story. (I really did! Okay so it wasn’t a personal message directed specifically to me, but it was an announcement about the hospital’s newest PR campaign titled — you guessed it — “Share Your Story.”)

So, here’s my story of being “treated” for rheumatoid arthritis at the Hospital for Special Surgery in New York City:

  • Upon seeing me for the first time, the very first thing Dr. C. Ronald Mackenzie (former chair of the American College of Rheumatology ethics committee, and current ethics chair of the Hospital for Special Surgery) did was ask: how does social security disability work, and why are you applying for this program? As far as he could tell, he opined, I was a perfectly healthy young man. (Never mind that he had never even met me in person up until a minute or two before, and also had not yet had a chance to look at any of my medical records. As far as my extreme difficulty with any type of movement, as well as my forearm crutches, well…I’m not exactly sure what he thought those were a sign of.)
  • The next thing Dr. Mackenzie did was glance through the medical notes that the other doctor in the room, Dr. Reena Khianey, had just spent the previous hour jotting down. Dr. Mackenzie pulled out a pen and immediately started crossing out item after item on the list of diagnostic tests, labs, and radiography exams that Dr. Khianey had prepared. We have to look at his knees and at his eyes, Dr Khianey protested — those are the patient’s biggest areas of complaint! We are not going to look at his knees and his eyes, Dr. Mackenzie replied — I already know that they are not going to show us anything.
  • On a follow-up visit, I was informed by Dr. Mackenzie that due to my personal financial situation, he would *not* prescribe me any of the newer biologic treatments, even if he did determine that I was (medically-speaking) a candidate for such treatment options. When I told him that it was his responsibility to prescribe medications, and that it was my responsibility to find a way to pay for them — that I even had a letter from the hospital’s financial assistance office describing some of the prescription assistance plans that I might be eligible for, he replied that I was misinformed.
  • He went on to say this was clearly a case of my subjective analysis versus his objective evidence, and as far as he was concerned, I showed no indicators of having rheumatoid arthritis. When a friend who accompanied me on this visit asked if my high prednisone use might not be masking some of the  symptoms of the disease, Dr. Mackenzie responded by standing up and walking out on the both of us — made all the more awkward by the fact that we were in his office!
  • On subsequent visits, when I was displaying very obvious (and serious) symptoms of corticosteroid withdrawal, I was asked if I was on any illegal drugs.
  • For months, the hospital’s accounting department kept sending me bills in the amount of tens of thousands of dollars, even though I had a letter from the very same hospital’s financial assistance office detailing what my reduced co-payments were to be, and even though a physical copy of this financial assistance letter was provided to each and every department that I dealt with; this error was corrected only after my account was eventually sent to a collections company.
  • One day, I received a text message from one of the doctors assigned to my case, telling me that it might be best if I went somewhere else for treatment.

And this, in a nutshell, was what happened during those three months that I spent in New York City.

In the end, however, I learned a *very* important lesson: hope is not always something that can be found by taking certain medications, nor is it always something that can be found from healthcare professionals or healthcare institutions (even supposed “top ranked” ones)…and don’t get me wrong, I’m not anti-med, and I’m not anti-doctor. I know that a lot of people benefit from many different medications, and I know that there are more good healthcare professionals then there are not. I’m just trying to make the following point: hope is something that resides within each and every one of us, and the sooner we realize this, and the sooner we start to tap into the hope that is inside of us, the sooner we’ll be able to overcome any — and all obstacles — that are placed in our paths.

I could look at my experience with the Hospital for Special Surgery, and use it as a reason to harbor feelings of anger and sadness, I could have used it as a reason to give up (which I darn well came very close to doing)…or I could look at my experience, and see it for what I was ultimately able to turn it into: an impetus to OWN my health, and an opportunity to realize that no matter how challenging things might get, it is always within my ability to stand back up, and it is always within my ability to keep moving forward.

There will *always* be doors that close on us — an uncooperative doctor, a difficult financial situation, or a disease that is not responding to treatment — but as the saying goes, when one doors closes, we just have to find a way to open another one. I didn’t find the answers that I was looking for, but I did the find the answers that I needed. And for that, I am grateful.

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