A Love Supreme

RA Guy Adventures of RA Guy


A Love Supreme is a ten minute black and white documentary film produced by Nilesh Patel in 2001. This film was a tribute to Patel’s mother, who lives with rheumatoid arthritis. The goal was to create a record of her skilled hands preparing samosas, in case they became affected by RA in the future.

“Seen on a big screen, the results are astonishing. The peas are the size of mountain boulders. Each slice of potato peel is like a ski slope. Corn juice dripping from a cob has the Adamic beauty of a fresh spring. Spices lie like desert sands. The pastry is kneaded and rolled and peeled by Indumati, whose fingers now appear huge. Her hands become historical texts that tell hard, complicated stories about female labor, migration, domestic economy. We peer at the thick veins and coarse skin, but also at signs of personality and prettiness – bangled wrists, hennaed curlicues. Samosa-making has been transformed into an epic activity.” –Gastronomica Winter 2004

This film is available for viewing at the BBC Film Network. (Real Player or Windows Media Player required.)

I have added a calendar on the sidebar to keep track of events related to disability and the arts. There are quite a few disability film festivals around the world throughout the year, so you might want to check to see if any of them are going to be playing in your area.

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

Changing The Rules Of The Game

RA Guy Adventures of RA Guy

As Memorial Day weekend approaches, Rheumatoid Arthritis Guy got to thinking about all of the summer games he used to play when he was a little boy. This was always such a wonderful time of the year! School was over, and the day was filled with endless days of playing outside with other kids in the neighborhood. Meals were mere annoyances that required us to run back into the house and take a break from playing. Best of all, we could stay outside until after the street lamps turned on…now that was the big life!

When we were forced back indoors – either due to the late hour or rain showers – not all was lost. There were board games of all types, such as Monopoly, Chutes and Ladders, Clue, and Parcheesi. I even remember having hours on end of fun with a barrel full of plastic monkeys. I can’t believe I’m admitting this publicly.

And then there was the game that was all the rage when I was young: Twister. With the large plastic mat full of large colored dots and the corresponding spinner, we had so much fun seeing who could get into the most precarious position without falling down.

Of course, this was back then – when all of my joints were still working correctly. Now, the thought of playing Twister does not have the appeal that is used to. (I wonder why…) And think about it: about the only thing the spinner might be good for now would be to add a little spontaneity to my checkups during my visit with my rheumatologist.

Right foot? Swollen.

Left hand? Slight inflammation. Moderate pain.

Right hand? Visible disfigurement in the wrist. Bright red knuckles. Lots of pain.

Left foot? Painful to step on. Lots of heel and ankle pain. Puffy appearance.

So I started thinking – If today I went back to playing the outdoor games that filled my summer days when I was young, what modifications would I have to make to accommodate my rheumatoid arthritis?

Here goes…

Hide and Seek

First of all, the person doing the counting would have to double, maybe even triple, the count. (How does seven-hundred-thirty-three -Mississippi sound to you?) Before I got into any particular space to hide, I would have to remind myself that I have to eventually get out of the space. During the hide, I would have to stay as still as humanly possible – I wouldn’t want any creaking joints to give me away.

Red Light/Green Light

Definitely need to add a yellow light.


As I already don’t feel like I’m constant being hit by a (lead) ball all the time??? Okay, I’ll give it a try – as long as the person throwing the ball is blindfolded.


Only if the lines are drawn on the sidewalk with permanent paint. Chalk would be a dead giveaway – too many streaks. None of this one foot thing – both feet are going into every square. And I’m walking.

Jump Rope

I’m not even going there…


I should be able to kick, with my ankle guards, heel cups, and power shoes.  Chances are I’ll even hit it out of the park, with my semi-bionic leg and all. But I definitely need a pinch runner (from home base, that is).

Leap Frog

Rules? What was the point of this game, anyways? No point, no play.

Mother May I?

“Mother May I take a giant step, but first may I get my crutches, and since I can’t really take a giant step can I replace it with four of my current steps instead? And am I allowed breaks?” (Rant: one of the most unfair games of all time…if the person was mad at you for any reason, you were practically guaranteed that any request you made – no matter how nicely – would be answered with a “no”.)

Thumb Wrestling


Quiet Game

Finally, this is my type of game! No modification required. Growing up as one of five kids, shouting and playing in the station wagon (there were no minivans back then) we were such the sucker whenever my mother asked us if we wanted to play the Quite Game. To this day, she still says those were some of her best dollars ever spent…

Is there anything I forgot?

No matter where this weekend may find you, be sure to make it  a great one. Don’t forget that inside each on of us there still is a little kid – so go play!

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

Voices Of RA: The Caregiver

RA Guy Adventures of RA Guy

Today’s post is dedicated to all the caregivers out there.
They are true unsung heroes.

unsung hero

Rheumatoid Arthritis Guy has a partner of almost ten years, who has been by my side during every step of our journey through rheumatoid arthritis. From attending every doctors appointment with me, to picking up the slack around the house, to giving me a shoulder to cry on, to putting up with my moods when I wake up with one of my “angry at the world” moments, my partner bravely faces the challenges of rheumatoid arthritis with me, day by day.

Rheumatoid arthritis impacts not only those of us living with the illness, but it also has a profound effect on those people who are part of our daily lives.

Today, I have asked my partner to write a few words on the caregiver’s perspective of living with rheumatoid arthritis.

There are so many things that I can talk about as the caregiver of someone with a debilitating condition, such as rheumatoid arthritis. But I would like to concentrate on three things that have helped me cope with this lifestyle: 1) allowing myself to experience all of my feelings, 2) recognizing that this illness is not only my partner’s – but mine too, and 3) learning to give myself time to rest.

What do I mean by allowing myself to experience all of my feelings?

As a regular human being, and a person that is in love with an individual that has a debilitating condition, I find that I often experience a full range of emotions that sometimes makes me feel angry, guilty, depressed, selfish, etc.  (Once in a while I go through a series of emotions all at the same time!)

What I have learned by living with my partner, Rhuematoid Arthritis Guy (or should I call myself his sidekick? Maybe…maybe not) is to be honest both with myself and with my partner.

Sometimes I have the right to feel angry, because I might feel neglected or invisible…

Sometimes I might feel guilty, because I might not be there in a time of need for my partner…

Sometimes I might feel depressed, because I cannot see a light at the end of the tunnel…

Sometimes I might feel selfish, because every now and then I want to be the superhero in some of the adventures…

Having all these emotions (and plenty other ones that I don´t have the time to talk about) does not make me a bad person or good person – it just makes me a regular human being. This is something I have had to learn! I have the right to have all these emotions! Once I recognized this fact, I think I became a better caregiver.

So now, I am a just a little better prepared to take part in the adventures of Rheumatoid Arthritis Guy!

On this journey though the land of RA, my partner and I have learned to depend on one another, while facing the fact that both of us are affected by rheumatoid arthritis.  This realization did not come easily (did I mentioned I am a mere mortal?) to either one of us. At the beginning, we both felt isolated from one another.  I guess we both went through all the stages that psychologists talk about: anger, grieving, denial, etc.

But in the end, I think it was easier for me to come to the realization that we both needed to put our battle outfits on if we wanted this relationship to survive. I think that it was easier for me to come to this conclusion – not because I am smarter nor am I a genius – but because I only have to deal with the emotional baggage that rheumatoid arthritis brings to a relationship, and not with the actual emotional and physical anguish that a person with rheumatoid arthritis has to go through every day.

I am happy to say that at this point, we are doing better in the communication department – and we now know unequivocally that we are there for one another.

Last but not least, as my partner continues to learn the importance of rest, so do I.

For more information about caregiving and online support groups for caregivers, please visit www.caregiver.com.

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

Out Of Joint

RA Guy Adventures of RA Guy

outofjointOut of Joint: A Private and Public Story of Arthritis
by Mary Felstiner

More info from Amazon.com

“A startling, poignant depiction of the progression of arthritis and of the person who is afflicted. Written from the heart with great lucidity and power, this book will alter forever the way you think about chronic illness.”

–Irvin Yalom, MD, author of The Schopenhauer Cure: A Novel

A few years ago – when I still had no clue what rheumatoid arthritis was – I woke up one day (it was around this time of the year, actually) with an enormous amount of pain throughout my entire body. Wow this is some whopper of a flu bug that I have! Never having experienced so much bodily pain in my entire lifetime (I was in my early 30’s) I assumed that the only thing that could explain so much pain was the flu – and a really bad flu, at that.

As each day went by things got progressively worse. I was confused that my continued bed rest was not helping my body heal; in fact it seemed like the more bed rest I got the more things hurt. About a week later, I remember saying at the dinner table: “Something is seriously wrong with me – nothing is supposed to hurt this much”.

As luck would have it, I was scheduled to take off for a six-week trip in just a couple of days. With no time to see a doctor, I turned to Google (of course). This was not the first time I had experienced pain – just a few months before I was on-again off-again with my knees, and had already purchased both a cane and a set of crutches. What was new this time around was the feeling that the pain seemed to be in every joint in my body.

I had been Googling “arthritis” for quite a while. But do you want to know something funny? Every time I passed the part about osteoarthritis and got to the part about rheumatoid arthritis, I would just stop and move on to the next page. Like clockwork. (I had a few months earlier read a paragraph on rheumatoid arthritis –  but it just seemed so complicated – immune system disorder? That can’t possibly be what I have.)

A day or two before I set off on my travels, for some reason I still don’t fully understand, I ended up on a rheumatoid arthritis symptoms page and decided to actually give it a read. Symetrical pain in the joints. Check. Swelling. Check. Fatigue. Check. Morning stiffness. Check. And the list just went on and on… (I still remember the moment with so much clarity,) when I first told another person “I think what I might have is rheumatoid arthritis”.

Fast forward a few weeks into the future, and I am in The Green Apple – my favorite used book store in San Francisco. I can and have spent many countless hours going through the large bookstore section by section. While browsing the disease book section, I came across a copy of Mary Felstiner’s “Out of Joint: A Private and Public Story of Arthritis”. As I flipped through the book and read the covers, I once again thought (and I still remember the moment with so much detail as I stood in the bookstore): this is so eerily similar to what I seem to be going through. Into my shopping basket it went.

I started reading the book soon after, before I returned home from my trip (which also means before I had a chance to schedule my first appointment with a rheumatologist). I think I read it in a day or two; it was a book that I could not put down. When I finished, there was only one thought in my mind.

This is what I have?

Notice the question mark – doubt. There is no way I could possibly have this thing called rheumatoid arthritis. It just seems so scary and severe.

Of course, just a few weeks later, I was diagnosed with rheumatoid arthritis.

After I received my diagnosis, my mind was reeling for quite a while. On one hand, I was happy that we finally knew what was wrong. Maybe now there was some hope that we could fix what was wrong. On the other hand, every time I read more information about rheumatoid arthritis, I felt more overwhelmed and just cried and cried. Chronic? No cure? What does that mean to my future?

During this post-diagnosis period, I remember feeling that I needed something, anything, to ground me. One day I saw “Out of Joint” on my bookshelf, and decided that I would read it again – this time from the perspective of someone who knows that he has rheumatoid arthritis.

The second read was probably even more difficult that the first read.

This is what I have!

Notice the exclamation point – shock. Even though I did still did not want to believe it, little by little the realization and acceptance of my diagnosis of rheumatoid arthritis began to seep in. (This denial/acceptance cycle would eventually repeat itself many times in the coming years…as soon as a bad flare passed, I wanted so much to believe that my rheumatoid arthritis was gone, that I would actually believe it. Until it returned and knocked my house of cards over once again…)

I have returned to this book many times during my first few years of living with rheumatoid arthritis. Before the blogs, it was one of the few personal stories I could find of an individual living with RA. Now, when I read the book either start to end or section by section, I return the book to my bookshelf with a little more peace of mind, and with only one thought.

This is what I have.


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

My 5 Favorite Things About Living With Rheumatoid Arthritis

RA Guy Adventures of RA Guy


Rheumatoid Arthritis Guy spends a little bit of time each day on Facebook (albeit less time since he has started this blog). Anyone who is on Facebook knows the routine: status updates, photo sharing, writing on a friend’s wall, quizzes, more quizzes, (even more quizzes – they just never seem to end!), sending virtual hugs, smiles, chocolates, flowers, and glasses of wine, and last but not least – “5 things”.

For those readers who may not familiar with “5 things”, it’s exactly what it sounds like. There are seemingly thousands of lists out there, and you are supposed to fill in your five favorite things according to the title of the list. It can be favorite cereals, favorite movies, favorite books, favorite things to do on a Sunday, etc. The list just goes on an on…

But up until now, I’ve yet to find any such 5 things list that is related to rheumatoid arthritis.

“My 5 Least Favorite Things About Living With Rheumatoid Arthritis.” Too obvious. Seriously, come on people – we could ALL fill out such a list and the chances are that 80% of our answers would be the same. (Or might I be wrong?)

So I struck out the least part and ended up with “My 5 Favorite Things About Living With Rheumatoid Arthritis”. Let’s give that a try – I’ll go first.

1. Positive Thinking

When all else fails (even the body) what are we left with, but positive thinking. For me, the thought of getting stuck in the negative part of life is just too scary. Sure, we all have moments of depression when living with a chronic illness like RA. I am beginning to see that even these moments of depression can be a positive things – it’s part of the natural grieving cycle that our body goes through as it processes pain and loss. So my goal is to no longer avoid moments of depression, but to instead learn to move in and out of them and not to get stuck there. No matter whether I’m having a good or bad day either physically or emotionally, I will now strive to be as positive (and realistic) as possible.

2. R-e-s-p-e-c-t

One of the things I have appreciated about living with RA is a new found sense of respect. First and foremost, I have learned to respect myself for the being that I am. (I have recently been listening to lots of meditation cds, and I love the continual emphasis on “being” versus “doing”.) I am also learning to respect my body. As many of us know, there is a fine line between working through the pain – in a good way, and working through the pain – in a bad way. The most important thing for me now it to listen to my body and the signals it is sending me – it’s doing so for a reason. Last but not least, I have learned to respect other people – friends, family, neighbors, and strangers alike. Just as my pain and struggle may not be visible to everyone around me, so too may be the case with other people.

3. Slowing Down

During my first few years of living with RA, I struggled quite a bit with the idea of not being able to do as much each day as I could do before my RA presented itself. Day in and day out it was the same reduced feeling of worth and measuring myself against others. Finally I got to a point where I flipped the entire things on its head, and I can’t say how much I am loving it. (As I’ve said before, the entire societal/cultural emphasis on overwork is unhealthy in so many ways, so is it not a beautiful thing that RA by force precludes us from continuing on that silly treadmill?) My body is slower. My days are slower. And for me, this has been one of the greatest gifts of living with RA.

4. Exploring Creativity

Every time I get a little deeper into exploring my creativity, I feel just a little more alive. For me, exploring my creative side has become a good way of getting to know both myself and the world around me just a little better. Plus, it has served as a welcome distraction from over-fixating on my RA. At times these creative moments have been prompted from outside forces: What is the easiest way to get dressed when both my ankles and my knees are not doing so well? What is the absolute minimum I need to put in my backpack when I leave the house? (My digital book reader and my ipod touch have been lifesavers in this regard.) At other times these creative moments have been prompted from inside forces: I’m going to start blogging and I’m going to love it. I’m going to spend more time exploring the world of art and music. We can never have too much creativity in our life.

5. Patience

Yesterday afternoon when I arrived at my physical therapy session, I was immediately told that I needed to plan on staying much longer than usual. (Scheduled for 60 minutes, my sessions have been averaging 90 minutes, and sometimes jump up to 120 minutes. Yesterday’s session was 120 minutes.) Patience. My wrists have slightly improved, my ankles and feet continue to worsen, my knees have jumped into the mix and are on par with my ankles, and feeling left out my elbows decided to join the party and are giving some tough competition to my ankles and knees. And have I mentioned my shoulders are making themselves heard as well – literally! All clear? So as everyone in the room was feeling slightly overwhelmed with the entire situation, I spent most of the time focusing on one thought: Patience. I want to get better overnight, but I know I must be patient and allow time for this flare to subside and for my body to heal.

So please share with the rest of us your 5 favorite things about living with rheumatoid arthritis/lupus/lyme disease/ms/fibromyalgia/chronic pain/fill-in-the-blank. Simple lists will suffice. (If you have not commented before and are hesitant to reveal your identity, go ahead and make up a name and email on the comment form – I don’t care – I just want to hear from you!)

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