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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Rock Bottom

Rock BottomEarlier this year, I was in complete crisis mode. Not only was my physical condition rapidly deteriorating–so much so that I started having serious vision problems in addition to my chronic pain and mobility issues–but my emotional state was almost a complete wreck. (I say “almost,” because I would later learn that I would fall more than I ever thought imaginable.)

I decided to ask for help. Even though I was uninsured and unemployed, as I have been for years, I decided to take control of my situation, and to look for a way to gain access to some of the newer–and very expensive–biological therapy treatments for rheumatoid arthritis. I asked readers of this blog to submit reference letters (thanks again to all who did!), I asked medical institutions for financial assistance, I asked family members for money, and I asked friends if they would open up their apartments to me, so that I could stay in New York City for a few months to explore options. Against all odds, I arrived at the lower tip of Manhattan in the middle of March, on a frigid winter morning.

Things were looking up.

Within the next couple of weeks, however, everything started to spin out of control–not only with my body and mind, but also with my life. The doctor who was assigned my case made it clear from day one that he had no interest in helping me (going so far as to, on a follow-up visit, walk out on me and my friend). My long-term Prednisone use had already made me lose the ability to control my thoughts (and was without a doubt heightening my depression), but every attempt to lower my dose–even in very small amounts–made my body go haywire. To make matters even worse, I woke up one day to find that all of the money in my bank account was gone. (With the help of family members, I had budgeted what I’d need to cover my personal expenses…but as soon as this money was transferred into my account, it was taken back out–garnished by the State of California for back taxes.)

The next day, I told my best friend from college–who stood by my side so many times during those months that I was in New York City–that I could not do it anymore. I told her that I was afraid that I was going to kill myself. She tried using her trademark humor (one of the things I love most about her) to cheer me up, but I wasn’t having any of it. I was done. Finito.

She did ultimately convince me, though, to keep on trying. I haven’t worked through all of the challenges I’ve worked through in the past to give up now, I told myself. I had to keep moving forward.

I decided that I would start walking every day, even if it was just for a few minutes. I told myself that I would get to know the city (and the buildings, and the grid, and the urban design) that I fell in love with twenty years ago, when I was a young college student at Columbia University. Even though the crowded sidewalks were absolutely frightening (and the subway system even more so) for a person like myself, who could barely move with the aid of crutches, I made a point to start moving more. I would get through this…I didn’t know how just yet, but at least I was–once again–moving in the right direction.

My physical condition continued to worsen. I was growing pallid. I was constantly shaking. I was sweating through multiple layers of clothes, 24/7. The ‘experts,’ who previously denied that my medicines (methotrexate and prednisone) could be causing such problems, were now accusing me of taking illegal drugs. (You know your world has turned upside down when complete strangers in New York City show more concern than the doctors; right around this time, a guy who I didn’t even know turned to me, as I struggled to walk down the sidewalk, and told me: Hang in there, buddy–everything is going to be okay.)

I had already stepped away from my blog, and from my volunteer work with Show Us Your Hands!, to focus solely on myself…but things still continued to deteriorate. There was very little food that my body could handle, I started developing extreme sensitivities to smells and anything that came in contact with my skin, and the frequency and length of my episodes of blurred vision continued to increase.

One weekend, concerned family members suggested that I travel to California, so that I could take a break from the hustle and bustle of NYC,  and from my constant medical appointments that seemed to be leading me further from, and not closer to, the truth. I agreed that I would get on a flight the next day–right after my morning medical appointment, that was.

The next day, I texted friends and family members to let them know that I would not be going to San Francisco, as planned.

What I *didn’t* tell them was that when I woke up that morning, I felt like I no longer had anything left inside of me. I was empty. I was finished. As I had told my best friend a few weeks earlier, I could in fact no longer do this. I was going to find my out, and I was going to find it that very same day.

As I walked to the subway station, thinking about specific details of how to do something that I hope to never have to think about again, I felt my phone vibrating. It was my husband. He had just received my text, and wanted to know why I was cancelling my trip. I’ll go another day, I told him. And even though I didn’t tell him what was on my mind, I think he knew, because he told me that I needed to immediately go to the airport and catch the next flight out.

I ended up listening to what he told me, instead of  listening to what I was telling myself. I sat in seat 37F (last row middle seat) for the next few hours, and started to marvel at the beauty of being alive, even with the constant challenges that I face. The next day I walked on the beach and breathed in the fresh Pacific air. I told myself that I had reached rock bottom, and needed to declare as much.  I knew that I still had a long uphill climb in front of me, but I also knew that everything was going to be okay.

I was right.

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

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How I Keep On Moving While Living With Rheumatoid Arthritis

movementEarlier this week, I met my former yoga instructor (now friend) for coffee. She asked me if I was still practicing yoga, and I said yes–but that I was doing it on my own, not in a group, and that I was not following any formal routines or strict series of poses. Instead, I now pay attention to what my body needs at any given moment, and use that as the basis for my ‘spontaneous’ workouts. If my body can do something, I do it. If my body can’t do something, I don’t do it (because I know that attempting to do so will only bring physical harm). I have fun with what I do, and I love the fact that every one of my ‘workouts’ is unique.

What I was describing, she told me, was the true essence of yoga–and she was very happy that I not only found it for myself, but that I continue to use it to improve my life and to keep on moving, despite the ever-present pain and disability.

When I talk about the fact that I now exercise on a regular basis, through alternate days of walking and yoga, I often receive angry messages from readers. These people tell me that it is not possible for someone with severe RA to exercise the way I do, hence I must either have non-severe RA (whatever that means, I don’t know) or that I must not have RA at all. Some go even further, and accuse me of being irresponsible for communicating my message that yes I am a person who lives with rheumatoid arthritis, and that yes I still continue to exercise!

But maybe this last piece is the part they understand the least. You see, I really don’t see what I’m doing as exercise. I see it as moving. And I see it as continuing to do everything within my control to keep on moving–because I know exactly what it feels like to not be able to move.

Case in point: I have been living with severe muscle contractures in my back for the past few years. This means that my back muscles are in a constant state of tension, i.e. they are both losing their elasticity and starting to shorten. Last year both my rheumatologist and my physical therapist told me that there was no pill or injection that could counteract what was going on in my back, and that the only way for me to be able to keep on moving was to, well, figure out a way to keep on moving. More specifically, I had to start doing range of motion and strengthening exercises for my back.

And yes, the thought of moving something that hurt so much seemed–at the time–completely illogical. My back screams out in excruciating pain when I move it, and you’re telling me that the only answer is to move it more? I have since found out for myself that yes, moving it more is indeed the right answer. (And this, from someone who had to undergo months of physical therapy treatments where electrical currents were used to perform the initial stretching of my back muscles–to call these sessions torture is not an understatement–so that I could then try to maintain such flexibility on my own.)

After months and years of working on this one specific part of my body, I have reached a point where I am now able to move my back with much more ease…but the trick is, I have to continue to do my range of motion and strengthening exercises…all…the…time…so much so that if I go more than 48 hours without working on my back, it starts to seize up. (Hence, my alternating days of yoga practice that I mention above.)

What about my walking? I’ve made no secret of the fact that over the past half year, I’ve started walking long distances on a very regular basis. Again, some people take this as a sign that I don’t have RA, or that I am in remission (both statements are untrue). I still continue to have significant pain in my toes, ankles, knees, and hips–this remains unchanged. But I have also considerably strengthened my legs, and this counts for a lot. Most importantly, it allows me to not have to use my cane and crutches as frequently as I once did, which in turn greatly reduces the load that my continually-weakening hands have to bear. (The eternal Catch 22 of RA: you need crutches in order to walk, but you need strength in your hands/arms in order to be able to use crutches.)

Twice already I have come back from the verge of being almost completely crippled, to regaining my mobility. This doesn’t mean that my pain has gone away, or that it doesn’t hurt to move. It only means that I know where my body is on a day-to-day basis, and I also know that if I don’t continue moving each and every day–as much as I possibly can–that this disease will very quickly get the best of me.

For me, it has nothing to do with exercise, and everything to do with movement (if that makes any sense). So much so, that I regard both my walking and my yoga as moving meditations. I light a candle and some incense if I am indoors, or listen to some relaxing music if I am outdoors. Most importantly, I focus on each and every breath, and on each and every movement. I prove to myself that even though my brain is continually sending me signals to not move (it’s own built-in reaction to receiving continual pain signals), that I am indeed finding a way to still do so.

So is it possible for a person like me to move the way I do? Absolutely. It’s not easy, but with determination and the right mindset, it is possible…and as with everything else in life, what is right for my body is different from what is right for other’s bodies.

Every step I take, and every yoga posture I hold, serve to remind me that I, and not my RA, am in control of my body.

I wouldn’t have it any other way.

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

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Your Life With Rheumatoid Arthritis

Even though many people tell me otherwise, I’ve never considered myself a writer. Having studied architecture and worked in multiple design disciplines, I’ve always thought of myself as a designer. I prefer drawing instruments over the keyboard, even though–as my RA progresses–my handwriting is becoming increasingly less familiar, and I continue to work my hands as best I can to preserve their already-lowered levels of precision and dexterity.

For me, a writer is someone like Lene Andersen. Fellow director of Show Us Your Hands! and well-known blogger, Lene loves to write–so much so, that I often tease her about her ability to massage words like few people can, to keep a sentence or paragraph in mind for days on end because it’s not “just right,” and to have an understanding of grammar that is almost encyclopedic. (Standing firmly in the “no Oxford comma” camp, I can already see her getting ready to mark up the sentence prior to this one!)

As Lene and I became friends over the past couple of years, I often heard make references to “the book.” Just by knowing Lene’s personality and with seeing how much work she was putting into this project, I had no doubt that the results were going to impress. It was with such eager anticipation that I welcomed the release of her book, “Your Life With Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain” earlier this year.

Even though I was in a world of pain when this book hit my Kindle account, and was getting ready to relocate to New York City for a few months to try to get my own RA under control, I immediately sat down to read Lene’s book…and I’m glad I did, because within some of the first few pages, I encountered her trademark sense of humor that has made me chuckle on more than one occasion.

When I was growing up, the treatments used to control rheumatoid arthritis were limited to steroids and injections of gold salts — yes, that gold — injected in my rear and no, my arse didn’t suddenly increase in value after the shots. By the time we entered the new millennium, a number of other medications had been added to the list and a quantum lean in RA treatment was underway.

I read words that spoke of where I knew I wanted to be, even though at that time it felt like I was worlds away from ever reaching such a place…and when I now look back and realize how far I’ve come in managing my RA over the past half year, I can only smile at the thought of how much this book has helped me during this recent journey to wellness.

Once you’ve come out of a flare and gotten your life back, you can go through your days with the awareness that a relapse is possible at any moment. I call it “living under the shoe.” RA is an unpredictable disease, and when you’ve shared your life with it for a while, waiting for the other shoe to drop becomes part of you. A superstition develops, a reluctance to say the word “remission” for fear that it will jinx you and bring the RA back with a vengeance. Many of us will verbally turn ourselves into pretzels rather than say the R-word. Instead, we say that our RA is “managed,” “under control” or suppressed” and knock wood every time we talk about it.

As much as I continue to learn that slowing down is a big part of my coping well with this chronic illness, I also know that slowing down is one of the most difficult things in the world to do, even when I see the benefits that doing so delivers. Lene addresses this issue in a way that is not only right on point, but that also speaks to just how complex something as “simple” as slowing down is for those of us who live with rheumatoid arthritis.

…it’s essential to learn to pay attention not to the tasks of the day, but instead to your body’s opinion of them. We are so used to being in constant motion that the idea of doing only what is good for our bodies is something we plan to do when we retire. Backing off and doing less, either because you can’t physically do what’s required or because you choose to slow down, can feel like giving up or being lazy. Sometimes those around you also notice and join in what can only be described as a judgment party. Not only is the voice in your head berating you for slowing down, but sometimes the people in your life start questioning you, too.

One of the best parts of reading this book was coming across powerful words of wisdom, nestled into paragraphs here and there…words that deserve to be printed out in large bold text on a single page of paper, and taped above a desk or next to a mirror.

Learning to pace yourself takes time. It means putting your own needs first, something we often instinctively label as “selfish” and therefore undesirable. It isn’t.

And then there are parts that make me wonder: why didn’t I ever think of that before? Take, for example, the use of “Mandatory Rest Period” instead of “nap.” Absolutely brilliant.

With [a] nap, I have the energy I need to get through my day and, most of the time, pain that is easier to manage. To shut people up who remarked on how lovely it must be to be able to nap — thereby inferring that I have nothing better to do — and to emphasize the necessity of the rest, I changed the language I used. I stopped using the word “nap” and instead now call it my Mandatory Rest Period.

“Your Life with Rheumatoid Arthritis” isn’t just full of helpful hints, advice, and tips that would have significantly shortened my RA learning curve had I know them in the days, weeks, and months following my diagnosis. (Even having lived with this disease for almost a decade, I still felt like I was ahead of the curve when I finished reading this book.)

“Your Life with Rheumatoid Arthritis” is also full of understanding, and of truth.

Learning the tricks to manage your RA pain comes with time. You can help the process along by staying committed to living your life as fully as possible. When you put your life first, it creates an expectation within you that achieving manageable pain is possible. This helps you pursue solutions from a position of empowerment. And best of all, it means you’re out there, living your life regardless of the pain.

Most importantly, “Your Life with Rheumatoid Arthritis” is full of hope.

Hope. Emily Dickinson called it “the thing with feathers,” and it is what allows you to spread your wings and fly. Nourish the hope within you, look forward, never back, and every day, practice seeing the beauty and joy in life. It is all around you.

Thank you Lene, for writing such an encouraging and helpful book. I am honored to call you my friend.

Your-Life-With-Rheumatoid-ArthritisUntil September 30, 2013, 50% of royalties from every single copy of “Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” will go to Show Us Your Hands!, a nonprofit charity organization that serves to unite and inspire people who live with inflammatory arthritis.

“Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” e-book edition is available at all Amazon sites, Nook, Kobo and iBooks. If you don’t have a Kindle, you can download the free Kindle app from Amazon. The paperback is available on Amazon and CreateSpace.

For more information, please visit www.yourlifewithra.com.

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

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