Thanks To Everyone Who Contributed To RA Guy’s Birthday Wish!

At the beginning of this month, I shared Rheumatoid Arthritis Guy’s Birthday Wish: with the help of Cathy Kramer and Lene Anderson, I want to turn Show Us Your Hands! into an official 501(c)(3) nonprofit organization by the end of 2012!

In order to do so, however, we needed to raise a significant amount of money to cover all of the various start-up costs: $2,000, to be exact.

As a way of celebrating my birthday and my blog’s birthday, both of which took place during the month of April, I asked people if they could please contribute to the Show Us Your Hands! start-up fund.

I’m pleased to announce that we reached our goal! I have previously thanked all of the contributors privately, but I would now like to publicly thank these people (listed below) for their generous contributions. To everyone who contributed, thank you! You contributions have firmly put us on the path towards achieving our goal of turning this community collage project into a nonprofit organization!

Show Us Your Hands! Start-Up Fund Contributors
Sponsors ($250 Donation) Friends ($100 Donation) Supporters ($10-99 Donation)
Kim ABCSofRA
Anonymous
Brenda Kleinsasser
Carmen Gonzalez
Don Walls
Ginny
Irwin Lim
Jenny Church Wise
Karen Fairbanks
Nancy
Rena Jones
Ambra D. Weidenbener
Anonymous
AutoCommunity
David Waugh
Deborah
Hay Wire
Jennifer Dye Visscher
Jessica Chapman
Jocelyn Phillips
Jodi McKee
Katie Walsh
Kelly RH
Marcia GB
Melissa Hinojosa-Zamora
Nan Hart
Sandra Mirisciotta
Wren

I would also like to thank everyone who has participated in any one of the many Show Us Your Hands! inflammatory arthritis community collage projects. Without your support and your help, our awareness projects would not have been possible!

Over the past few months, Cathy, Lene, and I—in addition to dozens of other project participants and hundreds of people who have submitted photos of their hands—have been hard at work. In April, the Show Us Your Hands! interactive community collage grew to more than a thousand hands. And this coming May, we look forward to releasing both a 1,000 Hands Poster and a Photo Book, in celebration of Arthritis Awareness Month in the United States.

It’s been an honor to work with the wonderfully supportive inflammatory arthritis community that continues to grow and connect online. Together, we have accomplished quite a bit during the past few months. I can only dream about how much more we will be able to do in the coming years!

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

Show Us Your Hands! in an international awareness movement which serves to unite and inspire the inflammatory arthritis community.

For more information, please visit www.showusyourhands.org.

3 Comments
Rosemary King

Rosemary King

Real Profiles of Rheumatoid Arthritis
Photos © Rosemary King

Name?

Rosemary King

Age?

24

Location?

Norwich, England

How long have you lived with RA?

I was diagnosed at the age of 21, three years December 2011.

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

The first time I was told I had RA was a major shock to me, I thought I was too young and I knew so little about it. Find out as much info as possible and ask lots of questions.

Do you use any mobility aids?

I mainly use the jar opener things and grip aids.

How has living with RA helped to improve your life?

This question really made me think, I’ve had a tough time with RA, I guess its made me change my life style a bit, I eat a lot healthier now then I used to, I don’t drink or smoke.

Do you have any visible signs of RA?

The main visible signs of my RA are my hands, they are constantly in flare mode and are getting more deformed as the years go by. My knees, shoulders and ankles also flare up often.

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

I watch a lot of comedy and lighten situations with a joke, I detach myself from things sometimes, music helps me to zone out of life.

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

I often look at my medications and remember back to a time when I didn’t even take pain killers for a headache, I had a pretty high pain threshold until the RA, now it’s different. Currently I’m on biologics- Rituximab (on infliximab before), also take methotrexate, alendronic acid, folic acid, prednisolone, sulfasalazine, lansoprazole and domperidone.

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

RA has changed every aspect of my life, I found it really difficult to cope in the early days before the diagnosis, I was so ill, a physical and emotional wreck, I didn’t know what was wrong with me, I was in so much pain and lost so much weight, I went down to 6 and a half stone and was totally unable to cope. What made it worse was that I was in my final year of an arts degree, miles away from home, trying to look after myself whilst having to cope with the stress of a tonne of work, deadlines and putting together an exhibition. Those days were hell for me and when I think back I’m amazed I managed to finish university and get my degree, I was so close to giving up but what kept me going was my amazing boyfriend, the love and support of my fantastic parents and the expert care of the Rheumatology Team at the norfolk and norwich hospital. I love England and I love the NHS, it is the best care in the world and means I don’t have to worry about the cost of my RA. The drugs although many, allow me to work full time and give me hope for the future, my goal is to go freelance with my photography and be able to work for myself.

2 Comments

How Taking The Opposite Approach Has Helped, In More Ways Than One

Sometime last week, I had one of those beautiful moments of realization. This time around, it had to do with the idea that quite often, the thoughts or reactions that are the complete *opposite* of those which often comes to mind first actually provide the best way to get through things. Now I’m no psychologist, but I’ve noticed in myself, at least, that there is a tendency to just stick with “the way I’ve been dealing with things,” instead of stepping outside of my zone of comfort, and trying to figure out if there’s actually a better way to cope. The answer to this never-ending question, I have learned, is almost always a definitive YES!

Welcoming the Pain

I’ve written on many occasions how after years of wanting, hoping, wishing, and praying that the pain would go away, I decided to adopt a completely different approach, and welcome the pain into my life. Originally it felt really weird to even consider such a thing, but the more I put it into practice, the more it made sense. And during the worst moments, when the pain even starts to affect my ability to think clearly, I still welcome it into my life. I tell myself that I’m going to familiarize myself with this pain even more, and that I’m going to learn something about it that I previously didn’t know. All of this means, in the end, that instead of moving towards the usual fight or flight type reactions, I stay calm…and figuring out how to stay calm, during these levels of pain and disability, is one of the biggest victories of all.

Living With RA Has Improved My Life

Quite often, when one is talking about disability and chronic disease, there is a tendency to assume that these conditions automatically lead to a lower quality of life. When this question it turned on its head–as I believe it should be, and as I have done myself in my Real Profiles of RA when I ask directly “How has living with RA helped to improve your life?”–I’ve learned that not only can the responses be quite varied, but that some people will tell me that it’s absolutely wrong of me to even ask such a question. Sure, my chronic illness has bought so much of what is often labeled as “bad” in my life, but the truth of the matter is that its also bought much more good. It’s taught me how to slow down and appreciate the finer, non-material aspects of life. It’s taught me how to face my challenges, and not shy away from them. It’s taught me respect, not only for others, but also towards myself. These are just a few of the life lessons my RA has taught me, and this this I will always be grateful.

My Can-Do List Will Always Be Longer Than My Can’t-Do List

I think many of us have seen the example of little kid #1 playing in a roomful of toys. Little kid #2 walks in, picks up an unused toy that is sitting in the corner, and walks out. All of a sudden, the only thing little kid #1 can thing about is the toy that is no longer in the room. It doesn’t matter that little kid #1 is still surrounded by toys; the only thing in the world that he wants is that toy that was taken away, and he’s not going to be happy until he gets is back. By telling this story I’m in no way trying to undermine the severity of the physical and emotional losses that we encounter when living with chronic pain and disability…but I am trying to make a point about the fact, that no matter how much is taken away, there is always still so much that remains. I know firsthand how easy it is to focus on the losses, and how hard it it to find something to take their place…but in the end, this is exactly what needs to be done. I recently uploaded Philip Glass’ complete collection of music onto my iPod. There are times when I can’t even walk, and I can’t even muster the strength to hold a book…but I can plug in my earphones, and I can explore a new world of music. No matter what happens, there is always something that I *can* do, even it it’s just thinking.

I Love My Life, Just The Way It Is

The other day, as I sat–semi-paralyzed–in the back of a taxi cab on my way to physical therapy, I told myself that this is my life, and I love it. As I struggled to climb the flight of stairs (non-elevator building…go figure) to my physical therapist’s office, I told myself that this is my life, and I love it. As she helped my take off my shoes and jeans, I told myself that this is my life, and I love it. And as electrical currents were applied to the muscles and tendons around my knee–muscles which are once again beginning to atrophy–I told myself that this is my life, and I love it. And I’ve noticed that I’ve started telling myself this over and over again, on a regular basis. I first wondered if that by doing this I was just trying to convince myself of something that really wasn’t true…but now I’ve come to see that I really do believe these statements, and that such thoughts are a true reflection of my life, would I really have it any other way? After all, what’s the alternative. To tell myself that I hate my life? Been there, done that, and all I can say is that such a thought is no longer the thing for me.

I will continue to welcome the pain. My chronic illness has improved my life. I will always be able to do many things. And no matter what, I will always love my life, just the way it is.

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

6 Comments

Rheumatoid Arthritis Guy (The Blog) Turns 3 Years Old Today!


Three years ago, I launched this blog with the following post:

Rheumatoid Arthritis Guy Saves The World!
April 24, 2009

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!

It’s been a wonderful few years of blogging and of getting to know people around the world. I look forward to being able to continue to do so for many, many years to come!

If you’d like to help me celebrate, please consider making a contribution to the Show Us Your Hands! start-up fund. We’re 3/4 of the way to our goal, and only a few days remain! For more info, please visit http://showusyourhands.causevox.com/.

Not please sit back, and stay tuned…as we wait to see what fun and crazy adventures Season 4 brings our way!

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

9 Comments

Even Superheroes Fly Coach

A month from today, thanks to the generosity of my parents, a brother, and a sister, I will be travelling to my home country of the U.S. for an extended visit. By now, most readers probably know that I’ve been residing in South America for almost the past decade. It used to be that I would go to the U.S. at least twice a year…but with all of my recent financial and health issues, I haven’t been able to visit for the past three years.

The trip from my house to my parents’ house takes almost 20 hours door-to-door, and require three layovers. Part of me, as excited as I am about the upcoming visit, is slightly nervous about pulling off such a trip while travelling alone. Deep down, however, I know that I am going to be okay, and that my decision to ask for wheelchair services is going to help a lot. The international arrivals/immigration/customs terminal at Miami airport is daunting enough for people who don’t have any problems walking…and DFW can be quite a challenge, depending upon the gate connections.

Here’s hoping that I don’t run into the same immigration officer who, during my last trip, asked me if I had hurt myself mountain climbing. Or the airport security official who tagged me for an extra security check because I was limping. Or the airline representative who barked at me to not stand in the pre-boarding area, because it was just for platinum or gold members. I guess I shouldn’t complain too much, though…{sarcasm alert} after all, once I pointed out that I was using crutches–something that was clearly visible to anyone who could see–she “allowed” me to stay in line with the pre-boarding group.

Another thing I’m really excited about this ten-week visit, during which I’ll be in Texas, Missouri, Pennsylvania, and New York City, is the fact that I’ll be able to avoid winder down here in the Southern Hemisphere. Most people normally don’t associate strong winters with south of the equator…but they can indeed be quite severe, especially at 12,000 feet above sea level! I know it’s going to be hot–very hot–in some of the places that I’ll be visiting, but I am already looking forward to being able to wear shorts and sandals, instead of being bundled up in multiple layers here at home.

I’ve got quite a bit that needs to get done in the remaining weeks; in addition to the usual packing and gifts that needs to be purchased, I also got to stock up on all the medications that I will be taking with me. During my extended visit, that starts in May and ends in August, I’ll be blogging on a regular basis, just probably not as frequently. I want to enjoy every minute during which I’ll be able to spend time with family and friends who I haven’t seen in quite a while.

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

8 Comments