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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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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Alexa

Alexa

Real Profiles of Rheumatoid Arthritis
Photos © Alexa

Name?

Alexa

Age?
21

Location?

Clinton Township, Michigan, United States

How long have you lived with RA?

9 years.

What advice would you give to someone who has just been diagnosed with RA?

I would say be strong, don’t let it get you down and discourage you, you’re still normal and can do what everyone else can do, you’ll just do it a little bit differently. I would also tell them to go to Rheumatoid Arthritis Guy because having others that share the same struggles as you do helps you feel as though you have your own little support system cheering you on.

Do you use any mobility aids?

I do not use any mobility aids, although I have been thinking about getting some.

How has living with RA helped to improve your life?

I take less for granted now and really appreciate the days where it isn’t painful to do my favorite activities. I really appreciate those who understand my condition and it has made my family and friendships grow stronger. My entire life attitude has been improved and I always try to think positively about my RA. Because of this, my positive thinking carries on to other things like my attitude on being able to do well in school and at my job.

Do you have any visible signs of RA?

I have some nodules on the side of my foot that is slowly worsening and my toes are swollen to different sizes. My second toes look completely different from each other because one has RA and the other does not. There is often swelling but it comes and goes.

Can you please describe some of your favorite coping strategies for living with RA?

Painting, painting gets me through everything, it is the one thing that I can really do that doesn’t hurt. When I paint, I forget the worries of arthritis and can even sometimes forget I have it in the first place. Another emotional coping strategy that I have is going on Rheumatoid Arthritis Guy, I can laugh at those “You know you have RA when…” comments.

Can you please describe your current medical (traditional and alternative) treatments?

I have been trying to fix my diet and exercise more to strengthen my body. I am on indomethacin tablets but have been thinking about going on Humira. I would prefer to get into remission through diet and exercise but I think I will give other medications a try to see if it can prevent joint damage better.

Is there anything else about yourself that you would like to share?

I’ve got a wonderfully supportive family and boyfriend that love me and want the best for me. I love teaching and can’t wait to do my student teaching this year with second graders. I also love traveling, it is an adventure for me (plus the fresh air in the England countryside does wonders for my mood). I am so blessed to have the opportunities that I am given and the strength that I have been able to carry throughout my difficult times.

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