I Thank My Rheumatoid Arthritis For…

SunsetI thank my rheumatoid arthritis for allowing me to realize that learning how to ask for help doesn’t make me weak; it makes me strong. I thank my RA for showing me that life goes on, no matter what obstacles appear in my path. I thank my RA for reminding me, on a continual basis, about the importance of eating healthy foods. I thank my RA for teaching me that, in the end, having a “career” matters very little. I thank my RA for allowing me to accept that if I can’t do something today, I am not a failure…I will just try again tomorrow. I thank my RA for providing me the opportunities to experience the beauties of rebounding from the lowest lows, and in appreciating life for everything it is (and isn’t), especially after previously having wanted to “end it all” on more than one occasion. I thank my RA for allowing me to meet so many other inspiring individual–both in person and online–who understand the importance of always looking for the silver lining no matter what happens. I thank my RA for encouraging me to continue moving, even (especially!) on those days when doing so seems like the most impossible of tasks. I thank my RA for showing me just how much warmth can be gained by sitting in the sun for a few short minutes. I thank my RA for giving me the opportunity to learn how to work through negative emotions in a way that doesn’t hurt myself or others. I thank my RA for showing me that one of the most beautiful things about support is that is often comes from where we least expect it. I thank my RA (and it’s associated reduced income and costly regular medical expenses) for encouraging me to appreciate the joys of having a non-consumerist based lifestyle; double thanks for making me more frugal than I ever thought possible. I thank my RA for teaching me that while I may not be in control of what happens to my body, I can always be in control of what is going on in my mind. I thank my RA for demonstrating that quite often the biggest steps backwards are actually huge steps forward. I thank my RA for teaching me the beauty of physical, emotional, and mental stillness. I thank my RA for showing me that stress has no place in my life. I thank my RA for allowing me to realize that prioritizing my well-being above all else is not an act of selfishness; it’s an act of survival. I thank RA for constantly reminding me that I should take nothing for granted. I thank my RA for never letting me forget that laughter is indeed the best medicine. I thank my RA for showing me the importance of focusing not on the past and not on the future, but on the present. I thank my RA for teaching me that a smile is one of the most precious gifts that a person can give or receive.

I thank my RA for allowing me to become the person I currently am.

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

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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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