From The Archives

On Becoming Visible
RA Guy on May 1, 2009

Over the past few weeks the invisible nature of my rheumatoid arthritis has slowly been slipping away, little by little. Anyone with an eye to detail could see the wrist guards and ankle protectors peeking out from underneath my clothing. (Who am I kidding? Even if they did not have an to eye detail, they could still see them.) When the superhero gear comes off, things are not any better. My swollen red joints blink like Rudolph’s nose – once again, not too hard to miss. But last night the final effects of my invisibility cloak wore off – my walking cane came out of the closet.

Read More: http://www.rheumatoidarthritisguy.com/2009/05/on-becoming-visible/

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When It Comes To Mobility, What Is Success?

MobilityYesterday, while most of my friends and family were sharing the details of the great bargains they found during Black Friday shopping, or preparing for the long journey back home by either plane, train, or automobile, Rheumatoid Arthritis Guy was preparing to go to class.

If you live outside of the United States, you will find that – to most people – the last Thursday of November is just another normal day. Luckily, my class schedule is MWF, which allowed me to squeeze in some uninterrupted Thanksgiving celebrations (and lots of football games) on Thursday.

As I left to go to class yesterday, I gave myself plenty of extra times, as usual. Whether I need it or not, I have gotten used to leaving much earlier than usual. If I am not doing so well when it comes to walking, this allows me to get to the classroom with the least amount of stress (and on time). If I am doing well, this allows me a few minutes at the other end during which I can sit on an outdoor bench and enjoy the beautiful views from the elevated terrace. Either way, I win.

As I passed through the sidewalks that meander through campus (I take the “scenic route” in order to avoid the stairs), I found myself struggling a little more than I had during the past few weeks. I focused in on the weight distribution between my lower body and upper body, as I tried to manage the pain in all of my different joints. My feet were hurting quite a bit, as they had been during the previous days. This usually means that I move more weight onto my crutches and upper body with each step I take…but yesterday, in addition to my wrists being in more pain than usual, my shoulders were also not doing so well.

I did my best to walk without too much pain, and eventually made it to the classroom. Along the way, I started dreaming about shock absorbers, and wondered how they would work when combined with a set of crutches. (I think I came across something similar when searching around the web for information on sports crutches, a few months back.)

During times like this, I often find thoughts of another item coming into my head: a wheelchair. I begin to envision how much more comfort I could be in, if I could just take the weight off of my legs and feet, arms and shoulders. While I am finding some mental rest from the idea of sitting down while I move around, I know that I am not thinking about all of the physical obstacles that would present themselves, should I ever actually use a wheelchair one day. (For just one example, be sure to read The Seated View’s It All Comes Down to the Bathroom.)

Whenever I find myself thinking about a wheelchair, I often finish by dismissing outright any such possibility. “Well, that might happen sometime in the future, but it’s definitely not where I am at the moment.” Or even better, “I am going to be a success – I am not ever going to have to use a wheelchair.”

I have only recently stopped to think about what it is that I am actually telling myself. In the process, I am trying to come up with some healthier thoughts.

When I evaluate my wheelchair use, I begin to realize that it is not a question about now versus the future. The reality is that while I do not use a wheelchair on a regular basis, I have actually used a wheelchair before on various occasions. There have been many trips where I have requested – and used – a wheelchair at the airport. There have been many times when I used the electric shopping cart at Target and other stores. And there have been many times during this past year when, deep down inside, I secretly wished that I have a wheelchair available for my use.

Which brings me to the second part, which is that not having to use a wheelchair while living with rheumatoid arthritis is often interpreted as a success…but is this the right way to approach the subject? After all, I have been using crutches for a large part of this past year, and I don’t think this has made me any less successful during my journey with RA. If and when I do use a wheelchair again, wouldn’t it be better for me to see it as one more sign of my ability to incorporate assistive devices into my life, and not as an indicator of losing this or that battle?

Sometimes, like yesterday, my entire body hurt, and walking was difficult. This is part of living with rheumatoid arthritis. It does not mean that I am doing everything possible to try to slow down the progression of this disease. It does not mean that I am not a rheumatoid arthritis success story. All it mean is that at certain times, the inflammation is so strong and present in so many joints, that movement of any type become difficult.

I will do whatever I need to take care of myself. This includes, but is not limited to, the possibility of using a wheelchair.

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

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Black Friday

Today is Black Friday, the beginning of the traditional start to the Christmas shopping season. Most stores open at 4 or 5 a.m. (I’ve even heard of some stores opening at midnight!), as people stand in line in hopes of grabbing one of the advertised doorbuster specials.

While my superhero powers might be many, standing in line in the middle of the night or at the crack of dawn is definitely not one of them.

First of all, my feet hurt too much. Secondly, why risk having my toes stepped on??? (Come to think of it, this second part might no seem so bad…after all, my toes already continuously feel like they are being trampled upon…by a herd of elephants.)

Luckily, we can now easily shop online, from the convenience of our own homes. No standing in line. No walking from store to store. No lugging around heavy packages. It’s almost as online shopping was designed for someone living with rheumatoid arthritis.

If you do plan to shop online this holiday season, please consider using the Rheumatoid Arthritis Guy Store, which is powered by Amazon.com. Not only will you be able to find the perfect gift for that favorite superhero in your life, but in the process you will also be sending a little gift to Rheumatoid Arthritis Guy, who earns a percentage of each item that is purchased from this store.

And if what you are looking for is not in the store, you can still support Rheumatoid Arthritis Guy by clicking on the Amazon.com “Find the Perfect Christmas Gifts” banner, when you start your online shopping.

RA Guy Store

Many thanks to everyone who has already purchased items through the Rheumatoid Arthritis Guy store, or through product links on the main page. (The TENS machine was a big hit, and a few people even opted for the Hot Hugs Giraffe!)

However you end up shopping this holiday season, have fun!

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

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Happy Thanksgiving!

“Thanksgiving dinners take eighteen hours to prepare. They are consumed in twelve minutes. Half-times take twelve minutes. This is not coincidence.” -Erma Bombeck

Thanksgiving

Rheumatoid Arthritis Guy would like to wish everyone a Happy Thanksgiving!

I just read up on the new balloons that will debut in today’s Macy’s Thanksgiving Day Parade: Spiderman, The Pillsbury Doughboy, Ronald McDonald, and Sailor Mickey.

Darn – no Rheumatoid Arthritis Guy!

According to parade producers, “To get up in the sky you have to be instantly recognizable, everyone has to understand who you are.”

Maybe next year Rheumatoid Arthritis Guy. Maybe next year.

Have a wonderful day! Give many thanks, eat lots of food, and watch hours of football!

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

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NRAS Christmas Concert

NRAS Concert
National Rheumatoid Arthritis Society Christmas Concert

Date: 10th December
Time:
7pm – 9pm
Venue:
St Giles Church, Fore Street, Cripplegate, London, EC2Y 8EJ
Cost:
£15 per ticket

There will be carols and readings, local school choirs, The NRAS Trio singers, mulled wine and mince pies!

Tickets are available from NRAS on 01628 501547 or by email to fundraising@rheumatoid.org.uk

Giving Machine

Holiday shopping online?

NRAS has recently teamed up with an organisation called ‘The Giving Machine’ which aims to turn NRAS supporters, who shop online, into Givers by converting sales commissions into donations!

All you have to do is click on the shop link through The Giving Machine website instead of going straight to that shops website.

It only takes two minutes to create an account with The Giving Machine and choose which Charity you would like to support when you shop.

It’s only 1 more click for you, but with enough people doing it, this could generate a lot more income for NRAS so we can carry on supporting people with rheumatoid arthritis.

NRASNational Rheumatoid Arthritis Society provides support and information for people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis, their families, friends and carers, and health professionals with an interest in Rheumatoid Arthritis.

More Info: www.rheumatoid.org.uk.

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