The Best Of 2013

10. Starting off the new year by asking for and receiving so many letters of support.

I started 2013 with Help A Superhero! A Personal Appeal From Rheumatoid Arthritis Guy, in which I asked readers of this blog to please submit letters of support that would be attached to financial assistance applications that I planned to submit to medical institutions in the United States. So many people responded, that I ended up having to write a multi-page cover summary which highlighted many of the points that were made in the numerous reference letters. Thanks again to everyone who took the time to write one of these letter–your support means the world to me.

RA Guy noticed he was, quite unwillingly, being fitted for a cape. His knees would grind, and not just during the winter months anymore. He would come to own a cane, then crutches. Until eventually, maybe to see if he truly was all alone, maybe to rail at the heavens, he started a blog. Thousands of followers, arthritis organizations, even pharmaceutical companies listened intently. They would come to learn of this superhero, this genius and visionary of quiet intensity, integrity, abundant warmth, and yes even humor in the face of unimaginable pain. A man who consistently chose the alternative ending as a way of showing us–this thriving community of optimists that he built–that the best was yet to come. —Michele

9. Learning to live in the moment.

Brooklyn-Bridge

As I journeyed back to wellness during the year, everyone was asking: What Am I Doing?

8. Participating in Jodi McKee’s Autoimmune Portrait Project.

RA-Guy-Portrait-Project

One Saturday afternoon, after having brunch in SOHO with a group of lovely women who live with rheumatoid arthritis, Jodi invited me to go on a ‘photo shoot’ for her Autoimmune Portrait Project. Even though I was smiling on the outside, I was broken on the inside. (This photo was taken three days before I reached my ‘rock bottom,’ described in item #1 below.)

I’m happy I had the opportunity to participate in this project; it was not only as a way to remember that period of time when I worked so hard to bring my body back into balance, but it was also as a way to add my image and words to the growing voices of people who continue to share what it is like to live with inflammatory arthritis and other chronic illnesses. Read my complete Autoimmune Portrait Project profile.

7. Turning 40.

40th-Birthday

I turned forty this year…and even though I was away from home at the time (I was in New York City for medical reasons), I was surrounded by a group of close friends who helped me celebrate into the wee hours of the morning.

6. Becoming more fit than I’ve been in a long time.

Fit

Some time around the middle of the year, I woke up one day and realized that I was more fit than I’ve been for decades. Not bad, for someone who in the prior twelve months dealt with minor surgery, very limited to no mobility, and more Prednisone pounds than a person could want. (And for the record, this is the first selfie I’ve ever taken!)

5. Getting off Prednisone.

Satans-Tic-Tacs

For years, I’ve used corticosteroids on an ‘emergency’ basis, i.e. short bursts to get me through my most challenging periods of pain and disability. Earlier this year, my Prednisone use became not only long-term, it also became high-dose. Before I knew it, my body and my mind were spinning out of control. The three-month tapering/withdrawal of this drug was one of the hardest, and most frightening, things I’ve ever experienced. I’m please to share, though, that I’ve made it through that last half year without having to use one gram of this stuff! Read more about my prednisone experience here.

4. Trekking the Bolivian Inca Trail.

Trek

While I was in New York City for a few months earlier this year, I learned how to walk again. This was the second time in the past decade that I’ve had to do so, as a result of the constant pain and inflammation that my rheumatoid arthritis produces in my body’s joints, muscles, and tendons. (At the end of last year, both my doctor and my physical therapist told me that if I didn’t find a way to start moving more, that my mobility losses were going to become permanent.) I decided to train for a three-day mountain to jungle trek…and in August, I accomplished what I previously thought was impossible! Day 1. Day 2. Day 3.

3. Paragliding over the Andes Mountains.

Paragliding

To celebrate an amazing year of personal healing and recovery, I decided to go paragliding over the Andes Mountains. Read more about how it felt to be sky high.

2. Finding my identity and voice through the pain.

Visual-Journal

Over the past few months, I’ve grown increasingly frustrated. Using a keyboard and mouse has become quite a challenge on most days, due to the chronic pain and inflammation in my hands.

I’ve always considered myself to be a designer and not a writer, though…so I recently took out some of my tools that I haven’t used in ages (cutting pad, metal straight edge, blade cutter, and glue sticks). I put my printer to work, and started to cut and paste away.

I quickly found that there was something extremely therapeutic about creating a visual journal, both in being able to perform actions that I thought were no longer possible with my hands, and in finding a way to communicate without words.

This is my story, as told by images that make my soul smile.

1. Bouncing back from rock bottom.

Rock-Bottom

Depression and suicidal thoughts are a normal part of living with chronic pain and illness. I have learned that by sharing my story, I am not only helping myself…I am also helping others. Read about my journey to rock bottom.

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

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Visual Journal: My Story

Over the past few months, I’ve grown increasingly frustrated. Using a keyboard and mouse has become quite a challenge on most days, due to the chronic pain and inflammation in my hands.

I’ve always considered myself to be a designer and not a writer, though…so I recently took out some of my tools that I haven’t used in ages (cutting pad, metal straight edge, blade cutter, and glue sticks). I put my printer to work, and started to cut and paste away.

I quickly found that there was something extremely therapeutic about creating a visual journal, both in being able to perform actions that I thought were no longer possible with my hands, and in finding a way to communicate without words.

This is my story, as told by images that make my soul smile.

MyStory01

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

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Freefall

balloonsAs much as I would like to think that I am prepared for every downturn that living with rheumatoid arthritis might have in store for me, the truth is: I’m not. And even though I knew that the winter conditions of the last two days were having a profound effect on my decreased mobility and increased pain levels, I still wasn’t prepared for the sudden tailspin (physical and emotional) that I entered into right around midday yesterday.

(Yes, we are moving towards summer down here in the southern hemisphere…but it’s also the start of the annual rainy season up here on top of the Andes Mountains, so when you combine wet and cold conditions with the extremely high altitude at which I live, summer ends up becoming, well, just another winter!)

One minute I thought I was just fine; the next minute I had no clue what was going on. I laid there, wondering to myself: what exactly is a person supposed to “grab on” to, when it feels like there is nothing to grab on to. Even though a more objective response to that question would show that there is indeed a lot to grab on to, the fact that my body just went from moving ‘normally’ to not being able to move at all–all in a matter of just a few short minutes–is enough (I hope) to explain why I might not necessarily be using the most logical thinking (to say the least) during such a crisis moment.

Less than a week ago, I had already started my bi-annual psych out–the mental pep-rally that I go through at the start of each (actual) winter and (summer) winter, when I start telling myself that even though I am in store for quite a ride during the next few months, everything will will be okay–all I have to do is hold on tight. Really tight!

But then my freefall started, and it felt like there was nothing to hold on to. I couldn’t even muster the strength to respond to my husband’s questions of concern: what did I need? We both knew that I was in for a big one, and that the only answer was for me to ride through it, best I could. It is during such moments, I think, when I realize that even the person sitting on the bed next to me can’t really do anything to make me feel better, when things become *really* scary. It’s like you know you have help, but you also know that you’re on your own.

As I experienced an agony unlike anything I had ever felt before (my entire spinal column was, for the first time ever, completely inflamed…and even though I was in a position that was not helping my back pain, I was not able to move into a different position) I started to tell myself that if there was nothing to grab on to, all I had to do was float…even if I was floating in some of the worst pain I’ve ever experienced.

Better yet, I told myself, why not fly? I’ve never shared as much, but whenever I lose complete use of my body and limbs, when I am unable to even change the music that is being piped into my earphones, I often start to fly, up in my head. I visualize myself floating through the clouds with a huge smile on my face, and I feel great, even though a little corner of my mind still knows that at the exact moment, my body is indeed experiencing the unimaginable.

Tears started to flow, as I remembered that just five days ago, I flew for real. When I floated through the sky while hanging from a paraglider this past Friday, I remember telling myself: next time you are unable to move your body, this is the place, this is the memory, that you need to come back to.

And just like that, everything started to make sense. I knew what was going on. I knew I was going to be okay. I continued to fly in my head for a little longer than I might have wished, but eventually, I came in for a safe landing.

(Thanks to everyone who supported me when I reached out for help yesterday–you all know who you are!)

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

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Sky High

When I saw this movie (The Intouchables paragliding scene) in February of this year, I was experiencing daily extended episodes of complete body paralysis. I told myself that if I ever regained my mobility, that I would go out and paraglide too.

Well, I did it! Today I went soaring above the Andes!

RA Guy Flying Above the Andes

 
Thanks to everyone who has supported me during my recent journey back to wellness.

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

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My Decision To Not Use Medicines Right Now Is All About Personal Responsibility

DancersYears ago, the chronic eczema in my legs flared up. By this point, I knew the routine: schedule an appointment with my dermatologist, stop taking warm/hot baths, and start slathering the thick prescription eczema cream on my legs twice a day. This time around, however, the doctor threw in one more thing–a one month prescription of anti-allergy pills. Within 30 seconds of taking the first capsule, I immediately broke out in huge hives. This was the first time I had ever had such a pronounced allergic reaction to a  medication, and it was a very unpleasant–and scary–experience. I called the doctor, to let him that I was allergic to the pills and could not continue to take them as he had prescribed. “You can’t be allergic to these pills!” he almost shouted, “…they are anti-allergy pills! Continue taking the pills, and we will discuss during your follow-up visit.”

By the time I hung up the phone, I knew that there would be no follow-up visit.

Many of my readers know that at the moment, I am not using medicines to treat my rheumatoid arthritis. The reasons are numerous; the most important one being that I’ve cycled through all of the DMARDS (and various combinations thereof) multiple times, and they are no longer effective. In fact, I’ve reached a point where they actually seem to make things worse. All of the recent headlines about the effectiveness of triple DMARD therapy make me shudder…I can barely handle one, much less two, and now the general consensus that seems to be forming is that I’m supposed to take three?! Why not try some of the many newer biological treatments, you might be asking. Well, the reality is that for many people, including myself, such medicines are not affordable. (My entire extended stay in New York City earlier this year was all about–as an unemployed and uninsured U.S. citizen–trying to gain access to such meds, but we now know how horribly off the rails that adventure went. As I mentioned in a Facebook post earlier this week, even my financial assistance application that I submitted to Pfizer was denied for–get this–not providing proof of valid income!)

Despite all of the above (and despite the fact that every member of my health care team agrees that *not* using pharmaceutical medicines is the right choice for me right now), I continue to receive a slew of message that all have the same theme: how can I be so irresponsible? Some people seem almost frightened of my story, and tell me that I should stop talking about my current non-use of meds because I am encouraging other to be irresponsible, too. Others go so far as to almost cast a curse on me: any joint damage and disease progression that I experience in the future will be totally my fault, and that when I reach that point they will be sure to remind me that I am the only person to blame. (Just lovely, don’t you think?) And then there is the icing on the cake: could I please not be so anti-med? (I mean, come on, do these people even read what I write?!)

The truth is, I am not anti-med. I know that many people who live with rheumatoid arthritis are helped by such medications. (Heck, some of them helped me greatly in the past.) But I also know that for many people, these same medicines provide only temporary (to no) relief. I also know–firsthand–that for some people, these same medicines and their serious side effects can actually have a negative effect on a person’s health. We are all individuals and we are all different; where we end up on this spectrum of possible reactions to different medications is as unique as every other aspect of our personal selves.

Rarely a day goes by that I don’t see some blow-up on one social media site or another, over the “right way” of treating RA versus the “wrong way” of treating RA…and this saddens me. It saddens me because I think, it this really the best use of our time and energy? Don’t we all have the same goal, which is to find what works best for each one of us? Are we not all aware that what works for one person will often be completely different from what works for another person?

I receive messages all the time from people who tell me that they would *never* use the same treatment options that I use, but that they are happy that what I am doing is working for me…and I love love love these messages, because they remind me that, indeed, we are all in this together. They remind me that what is less important is for all of us to follow the same path, and that what is more important is for all of us to encourage and support one another on our beautiful and very different, hopeful and optimistic journeys.

Maureen, a reader of this blog, said it best with these words that she wrote earlier this year:

RA Guy writes a blog which is rare; instead of simply complaining, he provides an outlet for his emotions (and, therefore, his audience’s emotions).  Instead of rallying for/against treatment methods, he outlines his own experience.  Instead of silently bemoaning the way RA affects life, he provides a thoughtful and sometimes amusing perspective.  Instead of whining, he provides an intellectual approach to the challenges presented by a degenerative disease.  Instead of simply disengaging from the processes of treatment which have not helped him, he consistently (and publicly) searches for new alternatives.

To all of the people who continue to send me messages about how irresponsible I am for choosing my own treatment options, and who continue to predict untold doom and gloom in my future, I ask you kindly: please stop. Rheumatoid Arthritis Guy–the website, the Facebook page, and my personal email inbox–is not the place to attack other people’s personal treatment choices.

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

 

 

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