Help A Superhero! A Personal Appeal From Rheumatoid Arthritis Guy

Dear Friends,

At the start of this New Year, I find myself writing to you on a very personal note.

As many people who follow my blog and my Facebook page know, even as I continue to improve my ability to manage and cope with the challenges of living with the pain and disability, my rheumatoid arthritis continues to progress. While I have surrounded myself with some of the most caring health care professionals that one could imagine, including but not limited to my rheumatologist who made a house call this past Sunday, my current treatment options are no longer proving to be as effective as they once used to be.

My personal situation is further complicated by the fact that treatment options are quite limited in the country where I reside part of the year. In order gain access to any of the newer treatments, I must travel to and explore options either in other countries here in South America, or in my home country of the United States. Once you add in my very limited financial resources that result from my inability to maintain gainful employment, it is quite easy to understand the magnitude of this challenge that I currently face. (I did apply for Social Security Disability benefits more than three years ago; I have been denied twice and am currently in my third appeals process.)

Over the past couple of days, I have made this promise to myself: one of my top priorities in the coming weeks and months is going to do everything with my control to gain access to the health care and treatment options that I so very need. I am asking you to please help me achieve this goal. I am not asking for money. I am only asking for five minutes of your time. I will soon be submitting financial assistance applications to various well-known medical institutions within the United States, and want to guarantee (as much as possible) that my applications get noticed!

Here is how you can help me:

• Write a brief character reference letter (1-2 paragraphs, guidelines/hints included in first comment below.)

• Sign your letter with your name and country of residence. (Complete address is not required.)

• Email your letter to rheumatoidarthritisguy@gmail.com

• Please note, these letters will be attached to the financial assistance applications that I submit. They will not be shared in any other manner.

I hope to start submitting some of these applications as early as the end of this month. If you could please send in any letters of support before January 25, 2013 this would be greatly appreciated.

Thank you so much for your friendship, help, and support. I wish each and every one of you a very happy and healthy New Year!

Cheers,

RA Guy

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Best & Worst Of 2012

THE BEST OF 2012

Our Hand Can! Photo Book

Every now and then when I need a little extra inspiration, I pull out my copy of the Our Hands Can! photo book and start flipping through the beautiful photographs and moving stories of people who live with all different types of inflammatory arthritis. When I return the book to the shelf, I smile at the knowledge that this book continues to reach all corners of the world. This book not only helps to unite and inspire the inflammatory arthritis community, but also helps to raise awareness of these diseases with which we live.

More info: www.showusyourhands.org/our-hands-can-photo-book/

Walking Across the Brooklyn Bridge

While a student at Columbia University in the early 90s, I once bicycled–but never walked–across the Brooklyn Bridge. So during a recent return visit to New York City I decided that I would do as much, even with my crutches and all! It was a sunny, hot August afternoon and as the architecture-geek inside of me admired the lovely shadows cast by the cables on the bridge, I thought it would be cool to capture a corresponding photo of the shadows that were being cast by my crutches.

RA Guy Sculpture

What can I say, other than that this is the coolest thing ever! (Thanks again, Donna.)


Meeting–In Person–Some of the Supportive People Who Read My Blog

While traveling in the U.S. this summer, I had the opportunity to meet these lovely ladies, all of whom live with rheumatoid arthritis and read this blog. It was really nice to be able to sit down to some pleasant conversation and good food. I had some other meet-ups in the works, including one in New York City, which had to be cancelled due to personal issues and schedule/travel changes…but hope to sometime in the future be able to meet many more people who follow my blog!

Show Us Your Hands!

With the aim of advancing its mission of uniting and inspiring people who live with inflammatory arthritis, and in line with its values of positivity, community, diversity, and transparency, Show Us Your Hands! began operating as a nonprofit charity organization during the month of December. This could not have been possible without the support of the community and the dedicated efforts of the Show Us Your Hands! Board of Directors. Stay tuned, as exciting new programs are announced in the coming year!

More Info: www.showusyourhands.org

THE WORST OF 2012

Cease and Desist Letter

Receiving a cease and desist letter from an existing nonprofit organization, threatening Show Us Your Hands! with legal action. (Didn’t your parents ever teach you to be nice to the new kid in town?) Here’s hoping for more emphasis on what really matters most to our community: increased awareness of inflammatory arthritis in 2013!

Thanks to each and every person who helped make 2012 a wonderful year here on Rheumatoid Arthritis Guy!

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

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My New Year’s Affirmation

Right around this time of year, it’s customary to start sharing our resolutions for the New Year; those things that we’ve been wanting to accomplish but have not done so far. In this blog post, as 2012 comes to a close, I’m not going to be sharing any new resolutions. Instead, I am going to affirm the things that have worked for me so well, up until now.

Expectations Management
This isn’t just some trendy term from the Harvard Business Review. For me, it’s become an integral part of my life, and has actually become somewhat of a miracle worker. You see, most of us are familiar with the aspect of disappointment that results from not having achieved what we had hoped to, but I think what exactly we hope for is a part of the equation that often goes less unnoticed. Now, I’m certainly not advocating for losing hope or for lowering one’s expectations…in fact, what I would advise is the exact opposite. It is absolutely essential, however, to not only set realistic expectations, but to set expectations which are in line with one’s own capabilities. If I wake up thinking I’m going to accomplish ten things on my to-do list, chances are I’m going to be disappointed. While it might be possible to accomplish five to seven things, I’m probably going to finish in a worst state than which I started. Figuring out the two or three things I want to do, and doing them well, it going to increase my chances of being able to do the same tomorrow, and the day after that, and the day after that, and so on. (And on those days when my list of accomplishments is limited to getting out of bed, taking a bath, grooming myself, and getting back in bed, I do indeed feel a sense of complete success. What’s the use of burdening myself with thoughts of failure?)

Think Before You React
Writing this blog has exposed me to a wide range of different ways of thinking, which I absolutely love. It has also brought me into contact with some individuals who, for one reason or another, vehemently disagree with the way I cope with my rheumatoid arthritis, and who feel the need to tell me as much in words that are not always kind, respectful, or polite. As a normal human being, I must admit that these messages sometimes make me feel defensive; they sometimes make me feel like I personally am being attacked. After a long discussion with my dental hygienist last week (I love that I have ended up with so many multi-functional healthcare professionals in my life!), I finally came to accept (even though many friends have told me the same over the past few years) that such messages had nothing to do with me, and had everything to do with the person on the other end. So I’ve promised myself that anytime I receive such a message in the future, in addition to following the non-engagement policy that has served me so well to date, I will not only not internalize the unhappiness that is being transmitted in such messages, but I will externalize positive energy, in the hopes that *all* of us find peace in the challenges we encounter.

Help Yourself By Helping Others
I always grew up being told that no matter how little we might have, we always had more than many others. As such, we needed to learn how to share, and how to help others. Now that I live in one of the poorest countries of South America, this lesson continues to be driven home. While I’m relatively poor compared to my friends and family in the United States and other parts of the worlds, I’m considered by many to be well-off here where I live. (It’s part of this dichotomy that can be confusing at times; while I am unable to afford healthcare in the U.S. I am able to afford 100% out-of-pocket private healthcare here.) My intent, however, is not to focus on the financial aspect of helping others (even though I have been the recipient of such help many times, and can attest to the huge difference it can to a person who is being forced to decide between medicines, utilities, and groceries). Helping someone else just makes you feel good, and who wouldn’t want that? Most importantly, helping others helps stop in its tracks any feelings of victim-hood. It also does double-duty, as when I am down in the ruts, helping others serves as a reminder of how much I can actually help myself.

Don’t Try To Control That Which Is Outside Of Your Control
(Don’t you just love how some of the most life-transforming beliefs are so simple, yet so absolutely difficult to fully accept and achieve?) Years ago, when I was not keeping up with the challenges of living with rheumatoid arthritis, a close family member would repeatedly tell me: you may not be able to control your pain, but you can control how you react to it. This was not something that I was told just one time, or even a dozen of times. It was something that I heard over and over and over again. With time, it slowly started to sink in, until it eventually became one of the first thoughts that would enter my mind during times of crisis. (Thus pushing aside thoughts such as I can’t deal with this anymore, or what will I do if the pain gets worse?) These words continue to remind me that no matter how much pain I might be in, no matter how upside-down (throw in a few more dimensions and then you might be able to really understand what it feels like) my world might seem at times, one thing will continue to remain unchanged: I am in control of my thoughts. And being in control of my thoughts, especially during times of crisis, is a true gift that I can apply to so many aspects of my life beyond just the chronic illness.

Learning Opportunities
Just as every day is a new opportunity to learn how to best move through this journey called life, so to is every new flare a chance to figure out how to better cope with the pain and disability. Adopting this attitude also goes a long way in removing the fear that I thought was inherent in my future with rheumatoid arthritis. I no longer dread the next flare, the next morning that I’m stuck in bed and cannot even roll over, or the next time that I am completely unable to use my hands. I can’t necessarily claim that I will ever look forward to such items, but I can say that I really do look forward to the opportunity to learn something new when I find myself in one of these situations. I have found that as my rheumatoid arthritis continues to progress, such a way of thinking is absolutely critical. Yes, the pain and the disability continue to present greater challenges…but I am confident that by continuing to build upon what I already have learned, I will continue to be able to meet the challenges that are placed in my path.

Here’s wishing everyone a wonderful 2013!

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

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Rheumatoid Arthritis Guy Sculpture

Yesterday on Facebook I posted:

You know you have RA when the Christmas gift that you’re most excited about is a bucket of multicolored modeling clay. (It’s not just fun; it’s also an excellent way to strengthen my arthritic hands!)

This message inspired private responses from multiple readers, including an actual modeling clay artist who sent me photos of the lovely creation shown below. The larger hands pays homage to Show Us Your Hands!, while the little superhero in the middle, well…I think we all know who he is!

Thank you, Donna. Not only did you put a huge smile on my face, but you also now have me dreaming of short animated features, Wallace & Gromit style!

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

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Easier, But Not Easy

Okay, so I’ll admit up front that part of this blog post is going to be a little effed up, but I just gotta get this out.

Yesterday, on my way home from physical therapy, I realized I was at that point where even though I know my pain levels are once again reaching extreme levels, my mind has not yet fully registered this recent (exponential) uptick in pain and inflammation. I was in that weird rheumatoid arthritis limbo, where one leg stands firmly in the memories of my recent week-and-a-half string of relatively low-symptom days, while another leg plunges back into a place where I would never voluntarily go, but which years of experience have taught me that the sooner I begin to emotionally prepare for what the near future might have in store, the better off I will be.

So it really should come as no surprise that last night, I had one of my worst nightmares in a long time. (And it was only just last night, at 3:00 in the morning when I was gasping for breath, that I *finally* realized that I almost always have such nightmares right around times like this, when my mind is once again struggling to accept the reality of what is happening to my body.)

Before I share last night’s nightmare (in the hopes of preventing a repeat tonight), I guess I should first give a little bit of background. I’ve shared repeatedly that one of my favorite things to do is cook in the kitchen (so much so that my story in the Our Hands Can! photo book talks about my love for cooking). I am also a big fan of the Top Chef television show (although speaking of nightmares, I’m not a big fan of having to sit through all of the commercials for the other shows on Bravo TV–all of the constant shouting always makes my head hurt!)

Somewhere in my sleep last night, I started dreaming that I was a contestant on Top Chef. The effed up part? The guest judge was Adolf Hitler. (I kid you not.) Not only did he have a gun sitting on the table in front of him, but he was also in a really bad mood. Thus, while I slept, my anxiety about whether or not my hands would be able to perform accordingly was right around the level of a person who just drank a six-pack of Red Bulls. Somehow I managed to not only come up with my dish (silly, I know, but I remember this part of the dream with extreme detail: salmon with thinly slices hazelnuts and spinach cooked inside of a phyllo dough shell…does such a thing even exist? I don’t even know…buy hey, I was dreaming) but I also managed to cook it as well, despite the fact that my hands were in so much pain. (Little did I know at the time that this final detail was in fact, not a dream.)

The moment I served my dish and saw the nefarious judge smile as he tasted my dish–when in my dream I knew that I was indeed “safe”–I was jolted awake. A split-second later I flashed back to earlier in the afternoon, when I told myself that even though I was fully aware of what was going on with my body, I had yet to fully process it on the emotional level. Once I realized what had just happened (the nightmare, the flashback), I also realized that I was lying in the safety of my own bed, with some of the worst pain (not just in my hands, but in my whole body) that I’ve experienced in weeks, if not months.

And I lay there starting at the ceiling, amazed at the power of this disease. At it’s ability to not not only mess with one’s body, but also with one’s mind–no matter how familiar one might be with it. I was amazed at how quickly it can surge…so quickly that even though one is making a concerted effort to accept what is happening, one is still not always able to quite keep up with it.

But I was also amazed with my body’s–and most importantly, my mind’s–ability to cope with this reality. Sure, my mind may occasionally stumble and start to fall behind…but as soon as it gets its bearings (as it did in the wee hours of this morning), it swiftly moves me back into the lead, and confidently guides me through the challenges which are once again being dropped in my path.

I’ve gotten through the before, though, and I have no doubt that I will get through it again. It’s definitely not easy, but as I go into each new upsurge I now find myself determined to figure out a way to make things just a little bit easier.

Because to not do so, would mean to fall behind. I don’t run this race by choice, but while I’m at it, I’m going to run the best darn race I can.

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

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