RA Guy: Season 5 (Starts Today!)

On April 24, 2009, Rheumatoid Arthritis Guy–the blog–was launched with this post!

Rheumatoid Arthritis Guy Saves The World!

Okay, so maybe I didn’t save the world – yet. But I did launch this blog, and on a Friday afternoon no less. Now I can kick back and relax over the weekend. I’ll go back to saving the world on Monday.

The idea to start my own blog has been simmering around in my head for a while, but upon hearing for the third time in a month “Why don’t you start your own blog?” I finally decided to give it a go. I put aside my self-paced iPhone application development training (and corresponding new MacBook Air – what a lovely thing) and jumped into the world of Adobe Illustrator (illustrations on the right) and WordPress (blog publishing software, for those who are not familiar).

I hope to have fun sharing adventures of my journey through chronic pain and debilitating inflammation. My rheumatoid arthritis has undergone a major progression during the past few months, and I need to turn my daily routine of putting on and taking off my wrist guards and ankle protectors into something fun. Hence, Rheumatoid Arthritis Guy and his tungsten wrist guards and titanium ankle protectors.

And yes, I really do still have a full head of hair. Although two weeks ago I started taking Arava for my rheumatoid arthritis, and one of the most common side effects of this drug seems to be hair loss. Here’s hoping that I don’t become follically challenged. (Although I guess being able to comfortably lift a brush is more important than having a full head of hair – darn those wrists!)

So welcome to my world and welcome to my blog. Don’t be shy – I would love to hear from you.

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

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When Things Fall Apart: On Fear

Excerpt from When Things Fall Apart: Heart Advice for Difficult Times:

Once there was a young warrior. Her teacher told her that she had to do battle with fear. She didn’t want to do that. It seemed too aggressive; it was scary; it seemed unfriendly. But the teacher said she had to do it and gave her instructions for the battle. The day arrived. The student warrior stood on one side, and fear stood on the other. The warrior was feeling very small, and fear was looking big and wrathful. They both had their weapons. The young warrior roused herself and went toward fear, prostrated three times, and asked, “May I have permission to go into battle with you?” Fear said, “Thank you for showing me so much respect that you ask permission.” Then the young warrior said, “How can I defeat you?” Fear replied, “My weapons are that I talk fast, and I get very close to your face. Then you get completely unnerved, and you do whatever I say. If you don’t do what I tell you, I have no power. You can listen to me, and you can have respect for me. You can even be convinced by me. But if you don’t do what I say, I have no power.” In that way, the student warrior learned how to defeat fear.

There is a fundamental opportunity for happiness right within our reach, yet we usually miss it–ironically, while we are caught up in attempts to escape pain and suffering. Drawn from traditional Buddhist wisdom, Pema Chodron’s radical and compassionate advice for what to do when things fall apart in our lives goes against the grain of our usual habits and expectations. There is only one approach to suffering that is of lasting benefit, Pema teaches, and that approach involves moving toward painful situations with friendliness and curiosity, relaxing into the essential groundlessness of our entire situation. In the midst of chaos, we can discover the truth and love that are indestructible. Included in the book are:

  • ways to use painful emotions to cultivate wisdom, compassion, and courage
  • ways to communicate that lead to openness and true intimacy with others
  • practices for reversing our negative habitual patterns
  • methods for working with chaotic situations
  • ways to cultivate compassionate, energetic social action

More Info: www.amazon.com/When-Things-Fall-Apart-Difficult/dp/1570623449

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Update 27 March

Things are spinning out of control, and I have to step away for a while. Please know that I have a lot of people looking out for me right now, and I know everything will be okay.

I look forward to sharing more superhero adventures soon.

xoxo

RA Guy

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Don’t Stop Looking For Answers

Having been in New York City for a little over a week now, I’ve reached that point where I feel like I’m finally getting settled in–partly due to the fact that my stress about my long international travel day is now a thing of the past, and partly due to the amazing support network that has mobilized around me.

It’s common to hear how a chronic illness like rheumatoid arthritis can weaken certain relationships. This is undoubtedly true, and I have experienced as much more than once during my RA “career.” I’ve also learned that there are often many other underlying issues that can attribute to such a thing happening, and that it is rarely ever completely the fault of this illness with which I live, and to the (sometimes) corresponding lack of understanding on the behalf of others.

One of the ways living with rheumatoid arthritis really rocks, however, is in learning who *is* there for you, ready to provide you support whether you ask for it or not. (Because, as is often the case, we usually need the most help when we’re the least inclined to accept it.) It is also in learning that this support can not only come from places you least expect…but it may also come from a wide multitude of sources. Recognizing this support network that surrounds me, and allowing them to step in and help in so many different way, has quite honestly been one of the few things that has allowed me to remain so optimistic over the past month.

Because while I know that good things will (and have already) come from this current adventure, and while I also know that nothing is guaranteed in terms of finding a way to slow down the progression of my RA, I also know that between the choice of focusing on what is going wrong or focusing on what is going right, I continue to make the only choice that I consider to be viable: find a way to make the most out my situation, no matter what that situation might be.

Even if it means throwing up blinders to certain situations in my life, in order to focus on what is absolutely required to not only keep moving in a physical sense, but also to keep moving forward in an emotional sense. While some people may interpret this as selfishness, those of us who live with this on a minute to minute basis know how it often comes down to a sense of survival; a way to not plunge into the darkness. (I’ve been there before, and never want to go back.) And while some people might interpret this as my advocating for thoughts of avoidance and denial, I am actually saying quite the opposite: don’t focus on everything…focus only on what matter the most.

One of the most difficult aspects of living with rheumatoid arthritis has been learning how to not only ask for help, but to graciously accept it when it is offered. While I got on a crosstown bus this afternoon, a lady offered me her seat. I thanked her, and immediately accommodated myself. A few minutes later, the lady next to me offered her seat to another person who had just gotten on the bus. This time around, though, the attempt to help was not so well received. “Do I look that old?” the new passenger asked, “because I really don’t like for people to offer me their seats.”

And I sat there chuckling to myself, trying to figure out how someone would not want to sit down and give their knees a break…and then I reminded myself that everyone is not so, let’s just say, “privileged” to have a pair of knees like mine.

Learning when and how to receive support is absolutely essential to figuring out how to cope with this disease. I know how isolating it can feel at times, how it can seem that very few people might be able to understand what is going on…but part of our role, as people who live with a chronic illness like rheumatoid arthritis, it to let other people know what we are living. (Of course, not only do they have to be willing to listen…but we also need to figure out a way to make them want to listen. It’s not always easy to find that right balance, but it is possible.)

As with so many other aspects of living with this disease, the answers we need are not always front and center. We have to look for them. Most importantly, we have to *want* to look for them. I have learned, firsthand, that as long as I continue to follow this philosophy, I will always continue to find the answers I need.

Because if we don’t continue looking for answers, what else is there to do?

In closing, I would like to thank each and every person who has offered a caring gesture of support over the past few weeks; I had originally planned on describing each generous act but the list has grown way to long. Please know, your support has forever been registered into my memory, and etched into my heart. I will never forget this recent period where I once again came oh-so-close to getting lost, but (fortunately) allowed myself to grab on to the helping hands that so many people around have and continue to extend. I may not be flying yet, but I have no doubt that I will soon be back to my normal superhero ways.

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

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Moving Forward

“After all that I’d been through, after all that I’d learned and all that I’d been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could do with whatever lay in front of me.”
― Michael J. Fox, Lucky Man: A Memoir

The past two weeks have been quite an emotional roller coaster, full of highs and lows.

First, came the news that my request for financial assistance at the Hospital for Special Surgery in New York City had been approved. Not only am I uninsured and unable to work, not only have I been in the disability benefits queue for years, but over the past half year my RA has come out of the gates swinging and has not slowed down one bit, oblivious even to all of the Prednisone that’s been tossed in its path.

Which has caused me on more than one occasion to start thinking about what the near future might hold, not as an exercise of fear but as an exercise of preparation. More specifically, what happens if I need to start using a wheelchair, on occasion? The part of the answer that I have difficulty with is not the actual wheelchair, but the fact that I live in one of the most physically-inaccessible cities in the world. Think: one million people, the narrow streets of Medieval Italian villages, and hills that by comparison make San Francisco look relatively flat…definitely beautiful to look at, but not great to be in when living with impaired mobility.

Back to receiving the good news, though. I was just turning in for the day when I got an email from my sister. It had no subject, an attachment, and the words: “thought you might like this.”

As I read the words, I was in utter disbelief. Yes, at the start of the new year I was determined to open new doors in regards to gaining access to new treatment options (and once again would like to thank everyone who wrote a reference letter of support on my behalf), but I never expected it to happen so quickly. The first thought that came to mind was that I might just be able to keep moving a little longer than expected; I might just be able to keep using my hands into the future.

And tears of joy started to flow, unabated.

Within a few days, however, my excitement started to turn into anxiety. Nervousness about having to make such a long international trip on my own (not helped any by the fact that when I made this same trip a few months ago, it turned into a four-day ordeal), but also nervousness about once again putting my local life on hold, packing my suitcase, and heading off the my home country of the U.S. for an undetermined amount of time.

I continued to focus on the positive though: this is an amazing opportunity that I have been waiting for for years. I am reaching the end of the effectiveness of treatment options that are currently available to me. Working to improve my health and my mobility are my top priorities at this moment in time, and in the coming months…even if it does mean that this will be the first time in twelve years that I spend a birthday away from my partner…and my 40th at that! (I’m still holding on to a sliver of hope that there may be funds for him to travel to NYC mid-April, but nothing is guaranteed yet.)

Then came the list of all the things I needed to do, even as my RA continued to progress and–for the first time ever–I lost the use of my hands for almost an entire day. I have to get some new eyeglasses, stock up on my meds, take care of an immigration/residency issue, and so on and so on. The pain itself was overwhelming; the thought of packing up and going to the U.S. in a few weeks was even more overwhelming. Throw in that I had to increase and not decrease my Prednisone after the first week, up to 25mg (my highest dose to date), and it was all just too much to deal with. I broke emotionally, and shared as much on my Facebook page.

I wasn’t the least bit ashamed…because the truth is, getting through each and every day, each and every hour, is trying enough. I sat up one night and told myself that I once again have to rebuild my life. Sure, I’m approaching this challenge from a position of hope and peace–unlike what I had to do years ago when I was stuck in a pit of darkness, depression, and suicidal thoughts–but I am, nonetheless, having to figure all of this stuff out: how to type, how to be able to carry things I need when I leave the house, how to cook when I can at times barely lift a fork to my mouth, etc.

I know I can do it, and I know I will do it. The thought of doing so, however, makes me feel already tired, and already overwhelmed. I use this as a reminder, though, that larger goals are made up of smaller goals, which in turn are made up on even smaller goals. So while it’s definitely good to set my sites on the larger picture, it’s probably even more important–and more effective–to focus on whatever little piece of the puzzle is in front of my, at any given moment in time.

It’s all about continuing to move forward, one step at a time.

It’s all about having hope for the future, without setting unrealistic expectations.

It’s all about living and loving life for what it is, even if–especially if–life takes us on a journey we never could have expected.

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

P.S. I purchase my airfare last night. The good excitement has started to settle in, and the nervousness has started to fade away. Plus, it’ll be nice to be back in New York City, a place that hold so many good memories from when I was an architecture student at Columbia University.

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