Visual Journal: My Story

RA Guy Adventures of RA Guy

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.





























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


RA Guy Adventures of RA Guy

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!

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

RA Guy Adventures of RA Guy

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!



Rock Bottom

RA Guy Adventures of RA Guy

Earlier 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 would get through this…I didn’t know how just yet, but at least I was–once again–moving in the right direction.
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 me, 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.

I was going to find my out, and I was going to find it that very same day.
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!

If you are experiencing suicidal thoughts, please reach out for help.