Trapped In A Box, No Longer

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Last night, I had one of my longest cries in a long time.

On Monday of this week, I called my doctor because my rheumatoid arthritis continues to worsen, even though two weeks ago we upped all of my medications and added a one-month Prednisone boost. One of the worst feelings in the world–even though I know that these meds often taken a while to produce the improvements that I’m looking for–is realizing that they are in fact not providing the help that they once used to. But this is not why I was crying.

As I wrote on Facebook last evening, I’m so far ahead of the game, on so many issues related to my rheumatoid arthritis. There is one thing that I’m still playing catch-up to, though, which is that fact that I am increasingly losing the use of my hands. My hands are in pure agony when they’re sitting still; wrapping them around the curvature of my computer mouse or trying to lift a cup of tea are becoming more and more of a challenge. I know that I need to start looking into more adaptive and assistive devices, both for my computer and for everyday tasks around the house. I also know that I am quite capable of making these adjustments, no matter how scary they may appear at the moment. Once again, though, this is not why I was crying.

My left leg is again randomly pulling itself into a huge knot. (This once happened while I was at PT, and my physical therapist flipped out…she had never seen anything like it!) In order to sleep I have to wrap a heating pad around it, in a last-ditch attempt to try to loosen some of the muscles. Of course, this doesn’t stop me from still waking up screaming, because–you’ve got it–my left leg decides it wants to look like a tangled-up slinky toy. (Just like “pain” doesn’t accurately describe what we live with, neither does “cramp” even begin to describe what is going on in my limbs at the moment.) Even as I was simultaneously experiencing all of these issues last night, and as it felt like my entire musculoskeletal system was crumbling to dust, I continued to ask myself why I was crying. All of the pain, spasms, cramps (whatever you want to call them) were still not the reason why I was crying.

I continued to look for an answer. Why exactly was I crying so much?

And then it came to me. I was crying because, at a certain point, the pain and the disability just feel like a box that is being erected around me, isolating me not only from the rest of the world, but also trying to isolate me from my own thoughts and my own body…and while for anyone else this box may be completely imaginary, for me there are many times when it becomes all to real. It is my mind’s way of trying to understand what is means to have no control over what is happening to my body; it is for the hundredth-, if not thousandth-, time once again experiencing the shock of not being able to move all or part of my body.

I reminded myself, though, that even if I feel like I’m trapped inside of a box, there is still a lot that I can do. I can–and must–punch holes in this box; doing so not only allows the light in, but is also lets everyone else see what is happening to me.

I’m not a victim, and I don’t want sympathy…but I *do* want people to see what it means to live with rheumatoid arthritis.

When I was a graduate architecture student at Harvard–almost a decade before RA entered into my life–I was completely fascinated with the concept of accessible design; where things such as ramps are an integral part of a building’s design and not just items that are added in order to meet accessibility requirements. I was so interested in this idea that I decided to make it the basis of my graduate thesis, and applied it to the design of a museum for prosthetic devices. I was excited by the thought of displaying these objects of beauty and design–both historical and modern–in the context of an “art” museum. (Eyeglasses, hearing aids, wheelchairs, artifical limbs, crutches, and the list went on and on…)

My excitement, however, left me completely unprepared for some of the comments I received during my thesis review, along the lines of I was showing things that were “supposed” to be hidden. I forgot some of the exact words that were used to describe my project, but I do know that they were not encouraging…and while much of the feedback had nothing to do with the actual design and execution of my project, it had everything to do with my basic concept. According to some on the panel, what I was doing was just plain wrong.

These words have stuck with me ever since, even more so now that I am disabled. (Who would have guessed that this entire issue would become much more personal than I could have ever imagined?) As I’ve gone through the many years of living with chronic pain and disability, though, I’ve made it more of a point than ever to not hide what is happening to my body.

I am not hiding it from others. Most importantly, I am not hiding it from myself. I am punching holes in the omnipresent box that surrounds me.

Which leads me to the present. Show Us Your Hands!, an international awareness movement that serves to unite and inspire people who live with inflammatory arthritis. Over the past few months, as this project has moved from its initial community collage to the nonprofit charity organization that it will soon become, I’ve heard some of the same echoes that I heard many years ago, back when I was a design student. “You’re not supposed to be showing things like this.” (Our hands.) “This is an aspect of our diseases that should remain hidden.” (Shame and stigma.)

Luckily, I am not alone in this challenge. We are all punching holes in the boxes that surround us. We are showing the world our lives, and we are showing the world our hands. We no longer hide.

As someone so eloquently stated in response to the Show Us Your Hands! Community Survey, “Show Us Your Hands! has created a unifying voice for those suffering from inflammatory arthritis, and provided a way for each of us to become advocates and to spread awareness. I am inspired to see that others are able to cope and remain positive.”

Or, “Normally I would not show my hands, in fact the opposite, I tend to hide them away as I sometimes get an adverse reaction from some people. This is an opportunity to say….This is me! I have to live with these hands! My hands show a journey of pain and survival!”

Let’s work together to continue to punch holes in the boxes that surround us, so that one day, such boxes will no longer even exist in the first place. Where instead of feeling trapped and isolated by our diseases, we can instead share our lives and share our challenges in order to unite and inspire one another.

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

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Sometimes Understanding (And A Little Hope And Happiness) Is All We Need!

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The mind is a powerful tool. It can either guide us forward on the path to happiness, no matter how “bad” things might be, or it can–especially when depressed–lull us into a false sense of comfort (which in reality is actually not comfortable at all, but instead is completely miserable). While many people know me as a super-positive superhero who successfully copes with the challenges of rheumatoid arthritis on a daily basis, I’ve never hidden the fact that just a few short years ago, I myself was stuck in a very dark place that was full of depression and suicidal thoughts.

I was miserable. I was isolated. I was angry. I was depressed. I was emotions that don’t even have a name. The pain and disability had taken control of my life, and my mind and body were just unhappy passengers on an endless ride.

No matter how confused I was and no matter how lost I felt, though, I am fortunate that there was a part of me, deep down inside, that always yearned for something better, even–especially–during these darkest times. I had absolutely no idea what it meant to combine “happy” and “chronic illness” in a sentence, much less what it meant to combine them in my actual life. Might it be possible to do so, I’d ask myself with trepidation? I mean, when I would venture into so many informational sites, blogs, and forums of discussion that I found on the Internet, there was often an overwhelming sense of doom and gloom. Stories of setback were commented on almost enthusiastically, whereas stories of acceptance and triumph–or even the desire to try to figure out how to do so–were either ignored or told to go away. (I know, having been on the receiving end of such comments.)

Luckily, I’ve always had the personality where whenever I’m told that something cannot be done, I immediately go about finding a way to make it happen…which means that many of the comments that I received years ago (and continue to receive to this day) rather than discouraging me, have had the complete opposite effect. I haven’t done this alone…thanks to my blog and to my Facebook page, I am now surrounded by thousands of other people who have the same mindset. Some welcome me from places of happiness that they’ve been occupying for years, despite their pain and disability, while others readily admit that they’ve not yet come as far as I have, but that they hope to get here sometime soon. In the end, what matters the most is not the specific location where we find ourselves at the moment, but the fact that we are all moving in the right direction, towards continued and increased hope and happiness.

Yesterday I received an email from a lady who told me about her “happy RA search” that she started a while back, as she looked for support groups that would be positive, funny, and that would make her have hope. According to her, she found nothing…that is, until she found my blog and Facebook page. She went on to thank me profusely, in a way that certainly made my day, if not my week.

So I in turn would like to thank everyone who follows Rheumatoid Arthritis Guy; to everyone who knows from personal experience that while the challenges that we face on a daily basis at a minimum are substantial and at the maximum sometimes tend to border on the “impossible,” also knows deeps down inside that each one of us has the ability to overcome them. They also know that as a group, that by sharing our stories, our lives, and our challenges, that were are not only helping ourselves, but that we are also helping others.

As Nic wrote on my Facebook page yesterday, “[When] living with a chronic illness sometimes understanding is all you need. Thanks for understanding.”

To everyone who understands the challenges that we face–whether you live with chronic illness or know someone who does–and who also knows that hope and happiness, and not doom and gloom, are the only way forward, thank you so much. Sometimes understand is all that we need.

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

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My “Best” Flare Ever

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I’m not a big fan of superlatives, and rarely feel the need to always have to compare one thing to another (first, best, biggest, only, etc.), but I must admit that there are instances when it becomes necessary to use certain qualifiers, in order to better understand the item that is under inspection. So as I look back at my most recent flare–a flare from which I am still emerging–I can say, without a doubt, that it was my “worst” flare to date.

Why do I say so?

For days on end, I had absolutely no idea how I was still able to move. Honestly. I know–and live–the whole “mind over matter” thing, and remind myself as much on a daily basis. This is an absolute necessity, when one lives with chronic pain and disability. Over the past few days, though, I really had no idea how I was able to move…even as I, somehow, continued to do so.

In the past, it’s always taken weeks–if not months–to fall into a flare as severe as this one. This time around, it took just a matter of days. And during previous flares, I’ve usually topped out at two major peaks of disease activity, during my days of continuous pain and inflammation. During this flare, I entered into the unfamiliar territory of having three major peaks each day…just as I was coming out of one crisis, I was almost immediately going back into another one.

I think we’re all familiar with the snapping and cracking sounds that are constantly emitted from our arthritic joints, but never before had my bones produced entire musical scores that were almost as long as Beethoven’s third symphony. Even after I’d stop moving my right shoulder, it would still–almost magically–continue making sounds…and if I’d take a drink of water, my jaw would rattle for the entire duration. (And silly me, all I could think was that these sound effects would be so cool two weeks from now, on Halloween!)

When I finally got around to calling my rheumatologist Monday morning–a few days before having mistakenly thought that I could go at least another week without having to see him–my life had become a complete blur, with a few moments of clarity here and there. I really do think he lost count of the number of inflammed joints in my body (or maybe after a certain point, a specific number doesn’t even matter anymore)…and the time it took him to jot down notes after my physical evaluation, which usually takes just a few seconds, ended up taking minutes.

But despite all of the above, I’m reluctant to label this flare as my worst yet. In a weird sort of way, I actually consider it to be my best flare to date. “Best” and “flare,” how can these two words be used in the same sentence, especially from someone who doesn’t even like superlatives in the first place, you might be asking? Well, let me explain.

This was the first major flare that I’ve gotten through without an anxiety attack. (Enough said!)

I used every second of this flare to try to learn something, not only about the pain but also about myself. Instead of staying in bed and getting depressed, I decided to dress up and go out to a nice dinner. Instead of crying (and don’t get me wrong, I don’t think there is anything wrong with crying…in fact, I think it’s one of the best ways to work through certain emotions), I decided to smile and laugh…as much as I possibly could.

Whenever there was something that I could not do, I reminded myself that there was something else that I could do. When even holding my 7″ tablet to read became too painful, I listened to music…and I didn’t just listen to music that I already knew. I decided to explore something new. (And this is how, over the past week, I listened to more Jazz music than I’ve probably ever listened to in my entire life!)

I managed my expectations well. Even on Monday, after I received my corticosteroid injection, I continued to spiral downwards. I wanted to relief right then and there, but I had to remind myself that my doctor said it would take 24-48 hours to take effect. And sure enough, the worst of my flare started to subside the following day. And as I sit here two days later feeling an entirely different type of pain–the destruction that this latest flare inflicted on my body–I know that it’s going to take time to get back to where I was just a few days ago. So I’m giving myself an entire month, to rest and recover. I didn’t get here overnight, and I’m not going to get out overnight. I’m going to manage my expectations accordingly.

And during the most challenging moments of my recent crisis, I knew where to turn to for help and support, and did so without hesitation. Sometimes it was matter of making a phone call, or requesting a hug here at home, or posting something on my Facebook wall. Whatever it was, it all fell under the realm of not only knowing that I needed help, but also knowing that it was okay to ask for this help…and realizing that I was surrounded by more people than I could have ever previously imagined, who were waiting and ready to offer a helping hand and some kind words of support and encouragement.

And this is how my “worst” flare became my “best” flare ever.

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

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Calm Before The Storm

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Over the past couple of months, I’ve noticed a steady uptick in the frequency and severity of my flares. I’ve gone from having a peak every other week (this, and not true “remission,” is where I often strive to be), to once a week minimum, to my now current of almost every other day.

While many people who are feeling the same thing right now can attribute part of these changes to the weather, I’m unable to do so. Down here in the southern hemisphere, we’re experiencing some of the warmest, most pleasant, spring weather possible. Which leaves me with the fact that I have, indeed, had to cut my weekly methotrexate dose in half because of elevated liver enzymes. Hence, the increase in my disease activity.

And as my rheumatoid arthritis “comes back” (even though it never really went away), there are two things that I’ve realized.

First, I’m not experiencing any feelings of guilt or blame. In the past, I’ve always beaten myself up a bit whenever I started having more flares. I’ve always wondered if there was something that I was/wasn’t doing to make my condition worse. Now, I’m a huge advocate of taking care of myself as much as possible, and I’ve never limited myself to just pharmaceutical treatments, but over the years I’ve learned that no matter how hard I try, sometimes I’m not going to be able to “control” my rheumatoid arthritis. It’s just going to take its course, whether I want to or not. So rather than spending my oh-so-precious limited energy on trying to prevent such flares, or on trying to figure out what caused this current flare (a game I played for so many years), now I just sit back and relax as much as I can…increased disease activity or no.

Second, I’ve realized that each and every new flare is an opportunity to learn something new; to figure out how to better cope with the pain and disability.

Yesterday I was flaring much more than usual. My right hip–*the* one joint in my body which up to now has not been affected by my RA–would occasionally scream out in pain midstep. The soles of both feet felt like a hot iron was being pressed against them, and…oh well, you get the point. The inflammatory process was moving full sail ahead, and I was in a lot of pain. And while I knew I was flaring, I mentally refused to declare as much…not in an attempt to deny what was going on, but as a way to focus on something else, despite the pain that I was experiencing.

As I sat there, reading, simultaneously watching a football game on my computer while watching a movie on the television screen, surfing the Internet, and so on (not so much in any panic or distraction mode, as this is what I do most evenings)–even having left my bed to spend time in the living room (I love my bed, but sometimes I just get absolutely tired of spending so much time there), a funny thought crossed my mind, as I somehow managed to have a relatively “normal” evening. All at once, I somehow managed to push myself forward, hold myself back, completely accept the pain, and not focus at all on the pain.

I chuckled to myself. As many personal successes as I’ve had in my life, such as getting my masters degree from Harvard University, etc. (and here I’m referring to those “visible” successes that are there for so many others to see, things which in all honesty I’ve never been too into), they come *nowhere* close to many of the private successes that I’ve been able to experience during my journey with chronic pain…and highest on this list has to be the ability to maintain control of my thoughts, and to feel calm and balanced, no matter how bad the pain might be.

I doubt that there are many other personal accomplishments, which can rank higher than this.

As I got into bed, having already started to fall asleep in front of the television, I noticed that the pain was there, hovering, ready to take over. I knew what I was in for, and there was absolutely no way of avoiding it. For the umpteenth time I sensed that (overwhelming) fear–that “oh my god, what do I do now?”–floating around in my head. I did, however, something that I don’t normally do when the pain is that bad. I absolutely refused to go down the path of feeling scared and anxious, of wanting the pain to go away.

So I invited it in. Literally. I told my pain that it was welcome in my body.

And just like that, the fear passed. Within a couple of minutes, I was soundly asleep.

The storm was coming, but I was calm.

Success.

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

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Guaranteeing That Today A Good Day (Even If You Are Experiencing A Lot Of Pain!)

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Years ago, soon after I started writing this blog, I was exhausted. I would wake to another day of immense pain and not know what to do. It often felt like I was parasailing; another gust of pain would come along and–like it or not–I had to go along for the ride. I remember thinking that if I could only get a half a second ahead of the pain, that I would be okay…and this felt like a perfectly acceptable goal, until I realized that I was in for the marathon of my life. Not only would the running never end, but I would also constantly be looking over my shoulder, looking at the pain that just never seemed to go away.

I’ll never forget those feelings of desperation.

One day is all I need. Just one day of no pain. One day of complete rest. One good day…and I will be okay.

That day I was looking for, however, never seemed to appear. The cycle of exhaustion, sadness, anger, depression, and every other negative emotion imaginable (and a few which were previously unimaginable) only continued to grow.

Then, just when it felt like I couldn’t take one more day of pain, I woke up one morning and asked myself: Just because I wake up with pain, does this mean that I should immediately write off my entire day as being a bad day? Yes, I know this is what I had been doing for what had already been years…but what if I were to wake up, and–despite the pain and disability–tell myself that I was indeed having a good day?

A few days later, I decided to make the following public promise, right here on my blog:

I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.

Since I wrote these words, my life with rheumatoid arthritis has never been the same. Sure, I still continue to experience pain and inflammation which leaves me suddenly unable to move my entire body; for exactly how long, I never know. I often have flares which are so world-changing, that it feels like I’ve passed through the back of a wardrobe. (And unlike others who are fortunate enough to  feast on Turkish Delight, I am advised to take ever more toxic medicines!) I live a lifestyle which, only during my recent visit to my hometown, is eerily similar (in pace, at least) to that of my retired parents! I am happy to share, though, that I have finally found someone who takes more naps than I do: my lovely one-year-old niece/goddaughter.

But, despite all these seemingly negative aspects of life with rheumatoid arthritis, I have finally reached the point where years ago I longed to be: I am happier than ever to be able to have one good day after another. (The secret, you see, was figuring out that even with the pain, I can still have a good day. In fact, I rarely ever–no matter how bad the pain is–label any of my days as being bad. Have you always thought that it’s impossible to guarantee that tomorrow will be a good day? Think again!)

If you currently find yourself in a place where it’s hard to connect with your thoughts or with your breath because the chronic pain just seems oh so overwhelming, if life seems like a series of bad days, one after another, do yourself a favor by doing exactly what I did many years ago.

Tell yourself that today is a good day, no matter how much pain you might be feeling right now.

Tell yourself that tomorrow is going to be an even better day, no matter how much pain you might be feeling then.

Trust me…it works!

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

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