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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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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Listening To My Body

imagesThe joy that comes from waking up each morning not only rested, but with a body that is a tad bit stronger than just the night before, is completely indescribable. (This is a nice counterbalance to another thought that I carried around for the past few years, which is that there is no way to even begin to describe what living with chronic pain actually feels like.) Throw in increased energy levels, healthy weight loss, and a peaceful minds and things get…well, even better!

Which doesn’t mean than I’ve reconnected with the life that I love so much as a result of this pain having gone away, but that I have been able to do so precisely *because* I continue to experience this pain each and every day. Just like the football team coming on to the field, every morning I have to intentionally punch through that barrier of pain and immobility that seems to always be setting in. (I also can’t help from thinking about dust: 1. even the smallest amounts are quite noticeable, and 2. the more it builds up the worse things usually get.) For me, this hasn’t been a journey of “finding out what works.” (It has, and it hasn’t.) It’s been a slightly similar but critically different pursuit that I’ve been able to identify during all the years that I’ve lived with RA: it’s about tapping into the continually shifting set of coping mechanisms that allow me to not only live with the pain, but to go out and lead the life I love.

It’s about what works for me right *now*.

Because what works for me tomorrow might be different than what works for me yesterday…and what works for me today is definitely very different than what worked for me last year.

(As some wise souls have already so concisely stated: the only thing that is constant is change.)

And as much as I’ve been sharing about how the things that I’ve started doing over the past few months have helped me tremendously, I’ve not talked as much about an even higher principle that has helped me even more. While pushing myself to do just a little more today than I did yesterday is important, and while the need to keep moving is absolutely critical, it’s even *more* important to not push my body too far, or to push my body too quickly. (Wouldn’t doing so be, by definition, the meaning of “harm?”)

It’s about listening to my body.

Just like I had to do this past week, when I injured some tendons in my left knee while stepping off a chair. Or when I reached a point Sunday evening when my back tightened up so much that I had to literally had to turn to stove burner off, step away from what I was in the middle of cooking, and go do some gentle stretches for half an hour. (I don’t even want to imagine what might have happened had I decided that I’d just finish what I was cooking, and *then* go exercise.)

A few months ago, I went through a phase that was absolutely frightening. I had entered into what seemed to be an absolute free fall, no doubt partially related to the extreme Prednisone withdrawal symptoms that I was experiencing at the time. There was much more at play, though–there was depression, there was my almost absolute immobility, there was my being away from home and, on many days, completely alone in a huge apartment in the hustle and bustle of Wall Street in lower Manhattan.

There was the fact that one afternoon, on those crowded sidewalks of New York City, and complete stranger came up to me and told me that I could do it, to not give up.

The thought of giving up never really entered my mind, though. (Although at one point I did admit to a close friend that I wasn’t exactly sure how I could keep pulling myself forward.) The friends who encircled me while I was away from my Home (with the capital “H”)–friends dating back to my high school and college times–were able to seen not only what I was going through personally, but there was also able to see the many challenges that seemed to appear with each new day.

The difficulty of not being able to digest food without considerable amounts of pain. The inability to focus in on text on the computer screen, words on the television screen, or signs in the subway station, even though I had just increased my eyeglass prescription a few weeks earlier. (The inability, for minutes on end, to even be able to see anything, as the inflammation reached the cornea of my eye.) The extreme sensitivity to smell that allowed me to identify what detergents had been used to clean the interiors of crowded elevators, SoHo restaurants, and three-level deep subway platforms. Losing the ability to control my body temps. Sudden skin rashes. Nasal allergies. Losing my sense of taste. And the list goes on, and on.

During this time, those around me often repeated the same statement: they were amazed with my ability to keep moving forward, and with my ability to stay so positive, despite all of the major challenges that I was facing. How was I able to stay so determined, many of them asked. How was I able to stomp on and over every obstacle that seemed to fall in my path?

My response was often one of that I didn’t have a choice. I had to do it; there was no other way. (Looking back I now realize that I absolutely had a choice. I could have gotten stuck, or more emotionally depressed. I could have focused on the negatives, instead of the positives. I had many options on how I handled the challenges in front of me, but I’m glad that the only ones that I was willing to take into consideration at that time were the ones that could–and eventually, would–lead me forward, to a better place.)

During my RA “career,” I have previously dealt with severe depression and suicidal thoughts. While I know that depression did play a part in what I recently encountered, I also know that what happened a few short months ago was so much more; it was something so frightening that even my prior brush with suicidal feelings, in the years following my diagnosis, pales in comparison.

You see, earlier this year I reached a point where my body started telling me that it was giving up.

I reached a point where even when I started listening to what my body was telling me, even when I started making as many changes as I could to help my body that was pleading for help, things just continued to worsen. The fear of what was happening to my body was quickly becoming just as paralyzing as my underlying disease. (This experience was, in fact, much more frightening than my previous bout with suicidal thoughts. Yes, at that time, my mind seemed to be giving up–no doubt a scary situation to find oneself in–but now it was my body that was giving up!)

And even though I could not yet see any improvement, I had to stay confident in the knowledge that I had tapped into a new awareness of what it meant to listen to my body.

I continue to listen to my body, as best I can, and you know what?

My body is no longer telling me that it wants to give up.

My body is thanking me. It’s also telling me that it wants to do more than it’s ever done before.

And this is why, at this moment, I am doing well. Not because the pain is gone, or because I am in remission, but because I have learned that my highest priority, from here on out, is to continue to listen to my body, as much as I possibly can.

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

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