Redefining Victory

For a long time it seemed to me that life was about to begin…But there was always some obstacle in the way, something to be gotten though first, some unfinished business, time to still be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life. -Alfred D. Souza

captainvictoryYesterday was a difficult day. The constant inflammation in Rheumatoid Arthritis Guy’s hands and feet has led not only to a great reduction in the amount of weight they can support, but is also limiting their range of motion. Waking up yesterday with such limited mobility felt like crashing into a brick wall. Crash test dummy or not, I made it my goal to at least move from room to room throughout the day. Although it was difficult, I managed to pull it off. (Never before have an Ultra-Portable PC and a MacBook Air – weighing in at 5lbs and 3lbs respectively – seemed so heavy!)

How is it that just a couple of weeks ago I was starting my day with not too many difficulties, I was going to pilates/yoga class five days a week, and I was able to step out of the house on short notice and go run errands – when now, just being able to bathe myself and get dressed sometimes feel like the biggest victories of my day?

So I got to thinking, what exactly is victory? (Is it me or am I beginning to sound like Carrie Bradshaw?) Victory always seems so big. Big “V” posters. Sports championships. Victory is more than just winning – it’s winning big. The confusion in my mind was growing stronger: is it okay to feel victorious after just getting out of bed, after just taking a bath, and after just getting dressed?

I woke up this morning, still reeling from the rapid descent of the past couple of days, and with my left foot in an even worse state than it was yesterday. The thought of going through the day seemed too much to handle. My mind and body were sending me signals of defeat (the thought of curling up and spending the day in bed crossed my mind more than once). I was just on the verge of throwing in the towel when I thought about the question that has been on my mind for days, and decided – yes, it is okay to redefine victory. (I ohhh so much want to make a George Bush jab here – but I think it’s best for me to keep politics out of this.)

So I spent this Saturday redefining victory.

Deciding I would leave the house during the day to go see the new weekend blockbuster movie. Victory. (Even though I had not yet done anything physically, I already felt that just having made this choice was going to be one of my biggest victories of the day.)

Bathing, dressing, putting on all of my braces and supports, and switching my cane for my forearm crutches – I’m upgrading my superhero gear so rapidly, it seems. Victory. (Even though this took over and hour and left me feeling exhausted.)

Allowing myself to lay down and listen to music for fifteen minutes before stepping out of the house. Victory. (In addition to being able to recover from getting ready, I was able to mentally prepare myself for the challenges I was soon going to face by going downtown while using crutches.)

Going to the movies and watching X-Men Origins: Wolverine. Victory. (Okay, the movie wasn’t that good, but with the sound literally piercing through my bones – must it be so loud? – it did give me an opportunity to get my mind off my rheumatoid arthritis. I would never rag on another superhero, but have you ever noticed how Hollywood superheros struggle when they gain new abilities. What’s up with that?)

Making an unexpected visit to a nearby museum where I spent an hour looking at some paintings and sculptures – one of my favorite things to do but probably one of the last things I would have proactively planned on a day like today. Victory. (Going up and down the antique wooden steps with my crutches -as there was no elevator – doubled as my exercise for the day.)

Taking things one hour at a time today ended up turning what would have surely been my worst day in months into one of my best day in months. If, in the future I have to take things one minute at a time to get though the day, that is what I will do. The pain is still there, the mobility problems are still there, but somehow I am learning that I can continue to live a fulfilling life.

So in closing, I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.

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

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Kudos to my sister for recommending “Learning to Breathe: One Woman’s Journey of Spirit and Survival“. I downloaded the book this morning and got through the first 100 pages. Reading about the author’s personal struggle with pain and hearing her motivational message was definitely key in turning my day around.

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On Becoming Visible

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.

I have two wood walking canes, one black and one brown. Like a good scout should always has two belts (black and brown) so must a superhero have color coordinated mobility aids. My mother once gave me a folding leopard print cane – I’m not making this up! I kindly told her that she might want to find someone else she could give it to as the chances of my using it were very very slim.

A few years back I was in New York City for a short visit. (I went to college in NYC and always enjoy returning and seeing how much the city has/has not changed.) One day I went to the Cloister to see the famed tapestries, then swung over to the Met to see the Egyptian temple, and then was walking down Fifth Avenue when – BAM! – my knee gave out like a flat tire. (Weeks of constant inflammation had finally caught up to me.)  My walking cane was, of course, at home thousands of miles away.

Needless to say, I had to cut short my plans that afternoon and find a way to get back to my hotel off Columbus Circle. So there I was in midtown Manhattan, bad knee, desperately wondering where the heck I was going to find a cane, when across the street I see a neon “Shoe Shine” sign flickering in a storefront window. It was sort of eerie, I know – just like the movies when some odd little store appears out of nowhere just at the right time (and usually selling items that carry some weird curses).

As I approach (half limping/half dragging my left leg) what do I see? A display of about a dozen walking canes, right there in front of me. I can not believe it! I get right up to the window, when – uh oh. All the canes have big silver handles in the shape of a duck, a steam engine, and who knows what else. No offense to any of my fellow superheros who happen to use this style of walking cane, but as a young guy in my early 30s (at the time) it just did not seem to be my thing.

A quick visit into the store revealed a larger collection of less flashy walking canes. Yes! I chose a classic black wood cane, had it sized (they had a saw – who knew?) and continued on my way. My sister’s wedding was coming up in a week, so I thought this new cane would go well with my tuxedo. (It did, by the way – luckily though, my height did save me from looking like Danny Devito playing the Penguin in Batman!)

So back to the present moment of today, I once again have to get used to the laser vision stares that come my way as I walk down the street. A seemingly healthy guy with a cane just seems to draw a lot of eyes. For some reason, strangers always feel the need to ask me what sport I was playing when I got my “injury”. Uh, I got into a cage match with my immune system, and my immune system seems to have won. I am tired of pretending to be a soccer player, but they always seem to like that response and leave happy. (I used to answer by saying that I had rheumatoid arthritis, but that never seemed to work — too many blank stares, and too many comments on my age.) I was once even asked if I had gotten hurt while mountain climbing. How adventurous of me, no?

I am hopeful that the inflammation will come under control in the near future, and lighten up the grip hold it has on my joints at the moment.  In addition to bringing the cane out of the closet, I also had to upgrade my right hand’s wrist guard from the wrist model to the full forearm model.  (Don’t forget, my wrists are not happy campers either at the moment.) I have to be careful that any strain that I am transferring from my foot to my cane does not cause further harm to my wrists.

So for now, Rheumatoid Arthritis Guy’s superhero nature is just a little more visible as he walks down the street.  Next time you see a young guy walking down the street with a cane and are wondering if he twisted his ankle in a pickup game of basketball, stop – and tell yourself: He just might be a superhero!

If you have any personal stories – serious or silly – about canes, crutches, and other mobility aids, I would love to hear them!

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

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Rheumatoid Arthritis Guy Mocktail

Rheumatoid Arthritis Guy find himself with the clock ticking down to Happy Hour Friday.  The NSAID side effect critters have unleashed an attack on his stomach. Scientists from the DMARD institute have advised on the reduction or elimination of alcoholic beverage consumption. And if that was not enough, the Inflammation monster is getting in some pretty strong punches. It looks as though this might be the end for Rheumatoid Arthritis Guy!

But wait – Rheumatoid Arthritis Guy runs into a nearby bar and whips together a mocktail that not only tastes great, but it’s good for your body. Once again, Rheumatoid Arthritis Guy saves the day (or at least, Happy Hour Friday).

These are the four main ingredients of my mocktail. Recipe follows.

GingerGinger – Ginger has long been used in India to treat inflammation and pain. Studies have shown that in patients with autoimmune disease, ginger is helpful in providing relief to some arthritic symptoms.  Ginger is also excellent for the stomach as it assists in reducing inflammation related to ulcerative colitis and digestive disturbances.


MintMint – Mint is well known for its ability to sooth the digestive tract and reduce the severity and length of stomach aches. Mint has also shown great promise at easing the discomfort associated with irritable bowel syndrome, and even at slowing the growth of many of the most harmful bacteria and fungi.


PineapplePineapple – Bromelain, an important enzyme found in pineapple, has been found to be a useful anti-inflammatory, effective in reducing swelling and assisting in the treatment of arthritis and gout. Pineapple is high in oxidants and full of manganese, a mineral essential for the body’s energy production.


7 Up7Up – Okay I’m not exactly sure what the health benefits of 7Up are, but everytime I got a cold or a flu when I was a little kid I was given my own personal bottle of 7Up to drink as I was in bed recovering.  This must have been a 1970s thing, as I think 7UP used to be marketed as good for your health and stomach.  Maybe it was the fizz.


Rheumatoid Arthritis Guy Mocktail

Put some ice cubes in a tall glass and fill with half Pineapple Juice and half 7Up. Add 1-2 tablespoons of Ginger Mint Syrup, to taste. Garnish with a fresh mint leaf. Enjoy!

Ginger Mint Syrup

-Medium piece of unpeeled ginger root, approx. 3-4 inches, chopped
-Small bunch of fresh mint, chopped
-1 cup sugar
-2 cups water

Mix sugar and water in a small saucepan over medium heat. Stir until sugar is dissolved.  Add ginger root and mint and simmer over low heat for five minutes. Remove from heat, cover, and allow to cool for one hour.  Strain syrup and store in airproof container.  Keep refrigerated.

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Tomorrow marks the one week anniversary of my blog launch, so I will be celebrating by drinking my mocktail. If you have your own favorite superhero mocktail recipe, please do share!

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

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Minimizing The Struggle: What Exactly Am I Fighting Against?

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.  -Lance Armstrong

As some of  you may already know, my rheumatoid arthritis has been flaring out of control since December.  My health situation was recently complicated by the arrival of winter, which is always a difficult time for my body as it adjusts to the cold weather.  Along with the physical struggle comes its wonder-twin: emotional struggle.

Over the past week things continued to get worse day by day.  But yesterday I thought: Just what exactly am I struggling against?  Is living with chronic pain and debilitating inflammation difficult? Of course it is.  Is this something that I have not previously experienced? No.

I have been though this many times and chances are I will go through this many more times in the future.  In fact, everything that is happening is quite familiar. The combination of affected joints and the severity level  may be different from previous episodes but a whole lot of what is going on remains the same.

So I sat down and began to think about what exactly it was that I was struggling against the most.  I realized that I was struggling against the presence of the rheumatoid arthritis in my life.  I was also struggling against the impact this was having on my daily life, even though by now I know what changes and modification I need to make in order to lighten the impact this illness has on my body and my life.

I may not be able to control the effect that rheumatoid arthritis has on my body, but I am able to control my thoughts and reactions when the illness presents itself.

So now instead of feeling defeated that I am currently not able to go to the gym and do an hour of intense pilates, I feel perfectly happy that I was able to pull out an exercise mat at home and do fifteen minutes of light stretching exercises. (There, wasn’t that easy? Not at first, but now it is.)

I recently tweeted “12 noon is the new 8am – life with RA.”  This was meant to be both serious and light-hearted.  It is true that on many days I do not get a strong start on my day until midday.  (We know the routine – morning stiffness, pain, difficulties in bathing and dressing, etc.)  But if on those days I need to realize that my start of the day is 12 noon versus the 8am of most people, then that is what I will do – and I will do it with pride.  Does it mean I must write off my day completely?  No.  It just means that I am pushing my starting time back a little.

Getting into some nicely pressed clothes instead of putting on the usual warmups make me feel good.  Taking my laptop to work in my sunny dining room instead of staying in my cold home office makes me feel good.  Putting arthritis lotion on my hands throughout the day makes me feel good.  Rubbing my joints constantly in order to add some warmth and improve their circulation makes me feel good.  These are just some examples of the smaller changes I have made in order to minimize the struggle.

Whether or not I like the pain or inflammation, it is here to stay until this current flare comes under control (and, it could possibly last beyond this flare – I do not know.) I can either continue to stuggle against something that I have no control over, or I can start to figure out what changes and modifications I need to make  in order to help me better cope with my rheumatoid arthritis.  From now on moving foward, I pledge to do the latter.

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

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Pushing The Limits Of Disability Radio

While driving through San Francisco a couple of months ago, I stumbled upon Pushing Limits on KPFA 94.1 FM Berkeley.  This thirty minute radio program explores the world of disability from many different perspectives, from personal interviews to news stories.

On the day I first heard it, Pushing Limits had a wonderful interview with Robert DeVee, a painter residing in the SF North Bay who has Parkinson’s Disease.  The entire interview was very interesting and quite relevant to anyone living with rheumatoid arthritis. I was particularly moved by Robert DeVee’s final thoughts during the interview (at 22:10.) I highly recommend anybody living with disability or living with someone with disability to give it a listen.

Pushing Limits – Interview with Robert DeVee  – February 20, 2009.

Pushing Limits airs on alternating Fridays at 2:30 PM PST.

If you are not in the SF area, you can subscribe to the podcast at http://kpfa.org/podcast/pod.php?show_id=33.  Please note that this podcast downloads every week but only every other week is the Pushing Limits program.

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

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