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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What’s Going On At The Arthritis Foundation?

WBS-TV Atlanta: Major Layoffs at Arthritis Foundation 



“The Atlanta-based Arthritis Foundation’s national headquarters laid off twenty-six administrative workers, nearly twenty percent of its entire staff.

But even with the foundation’s financial problems, its most recent tax return shows that in 2001 Dr. Klippel [Arthritis Foundation CEO] got a raise: more than a half million dollars in pay and benefits including a seventy thousand bonus.

Those same tax records show in 2011, outside fundraising firms raised nearly fourteen and a half million dollars for the Arthritis Foundation, but the foundation only got about 3.1 million–which is 22 percent of it–enough for watchdog Charity Navigator to give the nonprofit a one-star rating.”

Read More: http://www.wsbtv.com/videos/news/major-layoffs-at-arthritis-foundation/vs6q7/

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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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The Seated View: Real RA The Great Pretender

This blog post really struck close to home, especially since a week ago–the night before I took off on my extended trip here to the U.S.–I wrote the following to a friend:

“Honestly I’ve been even more of an emotional mess than I let on in my previous email, and have only been projecting that I’m doing well–it’s the only thing that’s been keeping me moving forward. But now it’s time for both my body and my mind to get back to where they need to be. I have no doubt that a lot of good will come from this trip.”

People with RA lie all the time.

How are you? 
Fine. You?

How’s the pain today?
Not bad.

Are you worried?
Not at all. I’m sure everything will be OK.

It’s a necessity of life with this damn disease. If you’re honest, not only will your friends and family start avoiding you, but you’ll start to bore yourself, too. There’s only so much unrelenting crap anyone can deal with before it gets old and miserable and you want to run screaming for the hills. But when you live inside the crap, there’s no way to run.

And so you lie.

Read More: http://theseatedview.blogspot.com/2013/03/real-ra-great-pretender.html

Fortunately, admitting and accepting those words that I wrote–as well as successfully completing my long international travel day–have gone a long way in terms of getting me back on the right path.

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Beautiful People Do Not Just Happen

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen.” — Elisabeth Kübler-Ross


The Five Stages of Grief

The stages have evolved since their introduction, and they have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grief is as individual as our lives.

The five stages — denial, anger, bargaining, depression, and acceptance — are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or goes in a prescribed order.

Our hope is that with these stages comes the knowledge of grief’s terrain, making us better equipped to cope with life and loss.

More Info: http://www.amazon.com/On-Grief-Grieving-Finding-Meaning/dp/product-description/0743266293/ref=dp_proddesc_0?ie=UTF8&n=283155&s=books

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