Sunday Break

RA Guy Adventures of RA Guy 6 Comments

Because there is no such thing as taking too many breaks!

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Modern vs. Ancient. The  photo on the left was taken while looking from the Jin Mao Tower observation deck into the atrium of the Shanghai Grand Hyatt. (The hotel is located on floors 53-87 of the world’s fifth tallest skyscraper.) The photo on the right shows a stretch of the Great Wall of China located outside of Beijing.
China

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Here’s to healthy eating! Although I’m usually good about what I eat, I can always do better.

Yesterday for lunch I cooked pan-fried fresh trout with mint mango, oven-roasted beets, and balsamic cherry tomatoes. Not only did the flavors actually work together (I was working from scratch), but the assortment of colors on the plate was quite nice.

On my nightstand, waiting the be read, is The Flavor Bible: The Essential Guide to Culinary Creativity, Based on the Wisdom of America’s Most Imaginative Chefs.

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I am going to start looking into voice recognition software. Does anyone have any recommendations?

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

Surveillance, Seeing, And The Truth

RA Guy Adventures of RA Guy 9 Comments

Today’s post is dedicated to everyone who has supported me on my journey through life with rheumatoid arthritis.
Near and far, you know who you are.

Surveillance CamerasRheumatoid Arthritis Guy is convinced that we live in an Orwellian world of Big Brother. No, I am not talking about the fact that we are surrounded by surveillance cameras, both visible and hidden. Neither am I talking about the fact that every non-cash transaction that we conduct will probably be stored in some hard drive for who knows how long. Medical records. Phone calls. Emails. Text messages. No, I am not talking about any of these things.

What am I talking about, then? Well, I am convinced that anytime I make a statement claiming that some joint or some part of the body is doing better, that somewhere an alarm sounds – and the person behind the rheumatoid arthritis curtain immediately turns up the dial from “mild discomfort” to “extreme overload”.

I’m kidding, of  course (if only because even any explanation – like the one presented in the previous paragraph – would be just too easy!) Only yesterday did I write the following in my post: “my wrists are doing much better than they were just a few weeks ago”.

What happened just an hour after publishing these words to my blog?  Would anyone like to take a guess? (As if we really have to guess.) My hands flared up like almost never before.

Later in the afternoon, as my joints were being examined by my physical therapist, she asked me if I was sure about my request that the entire session  focus on my hands. While my wrists, knuckles and fingers were visibly inflamed and sightly bent out of share, so too were my knees and my elbows. (One of the few good things about having extreme pain in one area is that if it is really bad, it can actually wash out lesser – but still substantial – pain in other parts.)

Right before we started I turned my hands palm-side up, as I want to point out the specific areas that were experiencing the most pain. Both the therapist and I were shocked to see what looked like thick purple marker lines all over my palms. Well, I learned a new word yesterday: vasculitis. This is when blood vessels in the hands become inflamed and burst open, causing dark purple spots to form under the skin. (Bruises, basically.)

Needless to say, 90% of the session was spent on my hands. (The remaining 10% was divided between my knees and elbows.)

As I watched television during the evening, and as my hands felt like they were roasting on an open fire (chestnuts, anyone?), I realized that once again I was focusing on a certain thought that frequently seems to take center stage whenever I am in the midst of a major flare.

In this world of constant surveillance and electronic gadgets that we live in, it is sometimes easier to see everything except that which lies right before our own eyes. Along these lines, I feel very hurt that some of my family members continue to deny, rather than accept, the reality of my life with rheumatoid arthritis. To them, my illness truly is  invisible. They cannot see it.

This past week I read a lot of comments and received private messages from people thanking my for my 60-Second Guide to RA. Many told me how this guide helped them talk to their friends and family about their life with chronic illness and disability. Up until now, I had only privately observed, with irony, the fact that some of my own family members know next to nothing about  my life with RA – despite my repeated attempts to the contrary.

I was a little hesitant to write these words, as they are very personal in nature – but many times during the past few years I have heard similar sentiments  expressed by others living with chronic illness and disability. For this reason, I decided to go ahead and write about this topic.

And in doing so, I have come closer to seeing and accepting some of the truths in my life, that lie right before my own eyes.

Yes, it is the truth that my disability goes unrecognized by some people who I consider to be close in my life.

Yes, it is the truth that this often causes me a lot of personal pain.

But what I guess to be the final truth on the matter is that ultimately, I need to accept this for what it is – something beyond my control – and move on, once and for all.

Because in the end, every second spent fretting about the actions/non-actions of other individuals – from close friends and family to strangers on the street – is one second that is better spent taking care of myself – body, mind, and soul.

This is easier said than done, I know. But sometimes, the most important thing is to take that first step.

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

R-H-E-U-M-A-T-O-I-D

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Rheumatoid Arthritis Guy spent last night watching the National Spelling Bee, and was blown away with the young kids who correctly spelled difficult word after difficult word. If I were competing, I don’t think I would have even come close to making it to the final round! (Unless, of course,  the “Wheel of Fortune” rule was one of the questions contestants were allowed to ask the judge. May I have a “r” please?)

Had the spelling bee focused on rheumatoid arthritis related words, however, I just might have had a shot at winning the championship trophy. Let me show you why…

Methotrexate.

Ankylosing Spondylitis.

Leflunomide.

Sjögren’s Syndrome.

Cytokine.

Plantar Fasciitis.

Synovial Fluid.

Interleukin.

Arthrocentesis.

Hydroxychloroquine. (Oh wait, there’s an easy way to say this: Plaquenil.)

Sulfasalazine. (Oh wait, this too has an easier name: Azulfidine.)

Corticosteroid.

And the list goes on and on…

Seriously folks, who comes up with these names? On top of having to deal with the actual illness of rheumatoid arthritis, we’re also required to be spelling experts? (Never one who wants to be left behind, I think I’ll go ahead and add a  spelling coach to my Team RA.)

(By the way, the winning word in last night’s spelling bee was “Laodicean”, which means indifferent or lukewarm – especially in matters of religion.)

I got to thinking, what exactly does “rheumatoid” mean. After all, I say it and write it multiple times during the day, and I am the Rheumatoid Arthritis Guy. Should I not have a clear understanding of this word “rheumatoid”?

So I went to my bookshelf and pulled out Volume II P-Z of The Compact Edition Of The Oxford English Dictionary and its accompanying magnifying glass. (Those of you who are familiar with this home edition of the OED know that if I was able to do the two tasks I just mentioned, then my wrists are doing much better than they were just a few weeks ago. Now,  if only my knuckles decided to settle down as well…)

Rheumatoid (rū-màtoid), a. [f. Gr. RHEUM (flux, that which flows; a stream; discharge) + OID.] Having the characters of rheumatism. Also, suffering from rheumatism.

Chiefly, in rheumatoid arthritis, a chronic disease of the joints characterized by changes in the synovial membranes, etc., and resulting in deformity and immobility.

1859
A. R. Garrod Gout AV. 534 Although unwilling to add to the number of names, I cannot help expressing a desire that one might be found for this disease, not implying any necessary relation between it and either gout or rheumatism. Perhaps Rheumatoid Arthritis would answer the object. 1866 Tanner Index of Diseases 233 Rheumatoid Arthritis…Synon. Rheumatic Gout: Chronic Rheumatic Arthritis. 1871 Practicioner VII. 87 The judicious practicioner will regulate the action of the bowels of his rheumatoid patient by proper diet. 1876 Bartholow Mat. Med. (1879) 224 The joints become the seat of rheumatoid pain.

So Rheumatoi-dal a., Rheumatoi-dally adv.

1889 Lancet 9 Nov. 947/2 Repeated rheumatic attacks may beget a condition commonly called rheumatoidal. Ibid., It is of such sufferers that we constantly ask ourselves..is this case going off rheumatoidally?

Now, you too can become a RA Spelling Bee Champion!

Are there any other hard to spell rheumatoid arthritis words that I forgot to list?

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

Design Meets Disability

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Book Cover Design Meets DisabilityRheumatoid Arthritis Guy recently came across what seems to be a wonderful book that combines the topics of design and disability. (I must admit that I have not yet read the book , but I hope to soon…) These are two of my biggest areas of personal interest, so I am quite eager to get my hands on a copy of this book.

Design Meets Disability, by Graham Pullin, was published last month by MIT Press. The book explores the potential for innovation that still exists when designing products to enhance the daily lives of people living with disabilities.

Eyeglasses have been transformed from medical necessity to fashion accessory. This revolution has come about through embracing the design culture of the fashion industry. Why shouldn’t design sensibilities also be applied to hearing aids, prosthetic limbs, and communication aids? In return, disability can provoke radical new directions in mainstream design. Charles and Ray Eames’s iconic furniture was inspired by a molded plywood leg splint that they designed for injured and disabled servicemen. Designers today could be similarly inspired by disability.

In Design Meets Disability, Graham Pullin shows us how design and disability can inspire each other. In the Eameses’ work there was a healthy tension between cut-to-the-chase problem solving and more playful explorations. Pullin offers examples of how design can meet disability today. Why, he asks, shouldn’t hearing aids be as fashionable as eyewear? What new forms of braille signage might proliferate if designers kept both sighted and visually impaired people in mind? Can simple designs avoid the need for complicated accessibility features? Can such emerging design methods as “experience prototyping” and “critical design” complement clinical trials?

Pullin also presents a series of interviews with leading designers about specific disability design projects, including stepstools for people with restricted growth, prosthetic legs (and whether they can be both honest and beautifully designed), and text-to-speech technology with tone of voice. When design meets disability, the diversity of complementary, even contradictory, approaches can enrich each field.

A few days ago, a young guy my age passed me on the sidewalk as I was getting out of a taxi. He had the coolest set of forearm crutches that I had ever seen!!! As I pulled my own set of (now boring) crutches out of the back seat, I continued to stare at his crutches as he walked down the block. (Talk about crutch envy!)

Only as he turned the corner did I notice that this young man had only one leg.

Almost immediately, I felt a slight tinge of guilt pass over me. Was it okay for me to be envious of this young man’s crutches?

So it was with some relief, and much happiness, that this morning I saw a video of athlete, actor, and activist Aimee Mullins talking about her collection of prosthetic legs. She wants them to be objects of art. (She even refers to some of her prosthetic legs “wearable sculpture”, which they definitely are!) She wants people to look at her prosthetic legs.

[YouTube video]

“A prosthetic limb doesn’t represent the need to replace loss anymore. It can stand as a symbol that the wearer has the power to create whatever it is they want to create in that space, so people that society once considered to be disabled can now become the architects of their own identities – an indeed continue to change those identities – by designing their bodies from a place of empowerment.”

This video is definitely worth watching – if only to see the part midway through – where Ms. Mullins asks the audience what exactly is a disability? “I mean – people – Pamela Anderson has more prosthetic in her body that I do, and nobody calls her disabled.” (Her words, not mine!)

In closing, I would like to ask people to take a look at Walking Wall by artist Harriet Sanderson. This permanent art installation is located in an orthopedic clinic in Seattle, and is comprised of hundreds of ash wood walking canes. This installation is beautiful both as a visual object and as a example of design meeting disability.

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

The New Normal

RA Guy Adventures of RA Guy 7 Comments

Thinking SupermanHave you ever woken up one day with the feeling that you seem to have changed almost overnight, while the world around you continued to remain exactly the same?

Rheumatoid Arthritis Guy has been feeling this way recently. It’s a weird sensation, definitely – but it need not necessarily be a scary one. The idea of re-establishing my connections with the environment around me, with my body, and with my rheumatoid arthritis might be quite unsettling were it not for the knowledge that in the process, I have been breaking bad models and replacing them with good models.

But any change, whether for better or for worse, does take time to get used to. And to be brutally honest, my heart is still catching up to my head.

You see, just six weeks ago I was still in major denial about the effect that rheumatoid arthritis was having on my person and on my body (and, my mind). Sure, I could see it and feel it, but this did not always translate to clear thoughts of understanding. I did not take the time to stop and evaluate what was going on. Once again (I have been through this cycle multiple times), the thought of acceptance seemed to be the equivalent of throwing in the towel.

Instead, I continued to tell myself that if I stayed strong I could work through it. By default, this meant that I was telling myself that any worsening of my rheumatoid arthritis was a sign of weakness on my behalf. Looking back, these were not very healthy thoughts to be having while dealing with a progressive and chronic illness, but that is where I was.

I continued to go to power yoga five mornings a week, all the time ignoring that my joints seemed more inflamed after each session. I thought that if I “gave in” to my rheumatoid arthritis and took a few days off, that my illness would get worse. As long as I continued to do the routine exactly as I’ve always done it, then everything was okay.

Little did I know that I was going the exact opposite of what I thought – by pushing my body too far, I was actually causing harm. And by not allowing myself to take the break that I needed to heal, I was denying my reality and the presence of rheumatoid arthritis in my body.

But all of that has changed in the past month.

During the past four weeks, I have prioritized taking care of my mind and body – above everything else. Each day is filled with appointments. One day I am going to physical therapy. The next day I am going to my psychologist. The day after that I am back at physical therapy. During the day I am putting on my ulnar-deviation gloves. (I am eventually supposed to get to the point where I can wear them overnight, but I haven’t been able to wear them for more than an hour yet!)

When I am not doing something physical, I am trying to find activities to help heal my mind and spirit. I blog. (This started as and continues to be, one of my best coping mechanisms. For me, it’s like putting my personal thoughts down in a private diary – with the exception, of course, that I am making it public for all of you to read.) I practice mindfulness. I listen to meditation tapes. I read. I relax.

Through this process, I have begun to lead a life that is a much more day-to-day.  I have not been spending a lot of  time dwelling on the past, nor have I been peeking much into the future. There always seems to be something in the present that I needs to focus on. With this, I have been content.

However, a couple of days ago I looked back at my past month, and felt a little overwhelmed when I realized how much things have changed. I then projected this past month onto my future, and felt slightly depressed as I asked myself: “Is this my new normal? Days full of medical care, exercise both physical and mental, and never knowing what my ‘point of recovery’ might be?”

I bought myself back to the present, and in doing so, I was able to affirm to myself: My “new life” is working for me. And in the end, isn’t this all that counts, no matter how long it lasts?

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