Sunday Break

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!

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Why Blog About Chronic Illness?

Kali from Brilliant Mind Broken Body added the following comment to my post The New Normal, where she talks about the benefits of writing and reading chronic illness blogs.

Thank you, Kali. I don’t think it could have been said any better.

I think that in some ways, a blog is a better coping tool than a private journal.

In a blog, you can get support. Sure, it’s from relative strangers in the anonymity of the web…but still, getting that support, and knowing you have people who watch for your entries…that can be a huge boost.

You also get community. Sometimes we just chat with you in your comments, after all – it’s not always support per se, but it’s being able to have conversations about what your illness does with people who get it.

You get suggestions – sometimes it’s a different way to think, sometimes an aid that might help you.

And finally…at some point, you start getting people willing to give you a little tough love when you’ve earned it. Hopefully, what that means is people who listen to what you’re saying you do and gently telling you when you’re being an idiot. Heaven knows, we all need someone willing to do that. And at least this idiot over here is more willing to listen to other people who’ve been there.

I very much agree with what Kim is saying. We have to de-program ourselves from the idea of what strength, productivity, and moving forward mean, and re-write what those words mean in our lives.

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Surveillance, Seeing, And The Truth

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!

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

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!

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Debilitating Pain of RA

I just received this comment on an older post, and think that it deserves more visibility – so, I am posting it here to my front page.

Thank you, Janet.  Very well said.

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In 2001 I was diagnosed with Chronic Regional Pain Syndrom(CRPS), and two years later I was diagnosed with Rheumatoid Arthritis(RA). Since then I have had many up and downs, surgeries, physical and psychological therapy, medication treatments, and still I don’t always feel that people understand what I am going through.

One day when I was down I wrote the following note and sent it to all my friends and family. I think it helped them understand that even though I may look OK that putting up that front helps me to take my mind off of the pain. I don’t want people to feel sorry for me I just want them to understand that there are days that I can’t be counted on to be my best.

Having a disability doesn’t make you disabled and although I can’t be as active as I used to be, (I always played sports) I always try to do what I still can.

One important thing I have learned is not to judge people by the way the look. I used to complain about people who have handicapped plates when they didn’t look disabled. Now I understand. So here are my thoughts on the “Debilitating Pain of RA”.

Debilitating Pain of RA

Many people don’t realize that we, the people living with Rheumatoid Arthritis(RA), don’t have to be in a wheelchair or use a walker to be disabled, the pain of RA does make you disabled whether it’s physically or emotionally. I realized this one week when my Remicade treatment had diminished from my system and the pain from RA ravaged my body.

I never knew what pain was, I mean real pain. Pain that makes you walk like you’re 100yrs. old, pain that attacks all your joints at once and makes you want to say “I can’t take this anymore!”.

I thought the pain I went through with CRPS was the worst pain I could ever have,(and I guess at the time it was) but that was just one knee, the RA pain went right through many joints in my body.

One day it attacks the knees, then it attacks the shoulders, the wrists, elbows and hands, next the feet, ankles and any joint that is vulnerable.

How can anyone say a person with RA is not disabled? Is it because you can’t see my disability? Or maybe my pain?

The day comes for the treatment and yes it does help the pain go away, but not away completely, it’s still there lying in wait until the medication diminishes from my body, then again pain will rear it’s ugly head then I will be in pain again.

Janet Richards 2008

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