My 5 Favorite Things About Living With Rheumatoid Arthritis

RA Guy Adventures of RA Guy 28 Comments

5_things

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!

Nothing Comes Between Me And My MBTs

RA Guy Adventures of RA Guy 8 Comments

mbtAs many of you all may already know, Rheumatoid Arthritis Guy has been having quite a bit of (severe) foot problems throughout the past half year.

I was visiting my sister-in-law and her family this past February. During one of our chats, the topic turned to these wonderful new MBT shoes that she has just purchased. She gave me a long list of all the benefits that these shoes provided. Me, being the guy that I am, was in the end really concerned about only one thing – how much did they cost?

When I heard that the price was in the mid $200’s, I was shocked. Once again, being the good guy that I am, I started calculating in my mind just how many pairs of shoes I could buy for that price. (In my entire lifetime I don’t think I’ve ever spent more than $100 on a pair of shoes, with the average price hovering just around $50.)

The next day I was in bed surfing on the web (and giving my feet a rest) when a thought crossed my mind: I should look to see if there are any special shoes that might help provide some relief to the constant pain in my feet and ankles. Totally oblivious to the conversation I had just a day earlier (silly, I know – the answer was right there brinking in bright lights right in front of me), I started to google to find the answer.

The search results: MBT Shoes.

Of course, I need to get myself some MBT Shoes! If they really help to relieve just a fraction of my foot pain, they will be more than worth the price of admission into the +$100 shoe club.

I went to the local shoe store the next day (Footwear etc., a wonderful shoe store with eight locations in the SF area). After choosing the models I liked and trying on various pairs, I settled on the MBT Chapa Belugas in green (pictured above). For me, they provided just the right balance between comfort and outdoor sportiness.

Up until that point I had not dared to look at the price tags, so I was pleasantly surprised when the salesperson told me that this model/color had just been “discontinued” by the company, meaning that the price had been reduced from $250 to $160. Score!

In the past four months (other than the few formal events I have had to attend) I have not worn any other shoes other than my MBTs. Sure, they took a little getting used to with the rocking sole and all (and be careful the first time you walk up/down stairs with them – I narrowly avoided several wipeouts) but once I got used to them, they were absolutely wonderful. The pressure on the areas that bothered me most – the toebox and the ankle/heel area, seemed to go away almost overnight.

The one big benefit that was not listed in the brochure: standing at 5′-11 1/2″, I have always yearned to be 6′ tall. (Granted, this is what my drivers license and everything else shows – it’s just easier to write it that way, no messy fractions and all. Good excuse, no?) Standing in my MBTs, I easily pass the 6′ barrier. So height-conscious men, there is no need to go messing with elevator shoes – just get yourself some MBTs!

I look forward to adding to my MBT collection. The best part is they have everything from sports shoes to sandals to dress shoes. By the way – I returned to the store a day later and treated myself to a pair of Qwaruba sheepskin lined slippers. I think I just might be starting to get a hang of  this elusive “shoe” thing.

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

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Superheroines, if you haven’t already done so, be sure to check out Barking Dog Shoes – a blog full of information about shoes that not only look good, but that are comfortable as well! This blog is written by Kirsten, a fellow superhero living with RA.

Sunday Break

RA Guy Adventures of RA Guy 4 Comments

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

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Midway through The Winner Stands Alone: A Novel by Paulo Coelho. Entertaining read so far, I hope it continues through the second half. Great commentary on status, the Superclass, and appearances – as seen through the Cannes Film Festival.

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I just saw Angels & Demons, which motivated me to pull out some of my Rome photos. Beautiful shots of art and architecture were interspersed in between the action scenes – overall a good movie with a slightly over-the-top finale (I had previously read the book…)

rome

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Rheumatoid Arthritis Guy’s Yoga Workout Playlist

1. Samtosha (The Eternal Embrace – Baird Hersey & Prana)
2. First Steps (Journeys – Himalayan Voices)
3. Namaste Sadhana Remix (Sadhana – Maneesh De Moor)
4. Namaste (Check Your Head – Beastie Boys)
5. Om Asatoma (The Essence – Deva Premal)
6. As I Lay Me Down (Whaler – Sophie  B. Hawkins)
7. The Wheat (The Best Of Lisa Gerrard – Lisa Gerrard)
8. Bow Down Mister A Small Portion 2 B Polite Mix (At Worst…The Best Of Boy George And Culture Club – Culture Club)
9. Karma (Buddha Bar IV – Outsized)
10. But I Feel Good (Lovebox – Groove Armada)
11. Rain One (Varekai – Cirque Du Soleil)
12. Little Fluffy Clouds (The Orb’s Adventure Beyond The Ultraworld – The Orb)
13. Balance (Journeys – Himalayan Voices)
14. Serenity (Liquid Mind V: Serenity – Liquid Mind)
15. Chakra Chimes (Chakra Suite – Steven Halpern)
16. Om Namo Narayana (Love Is Space – Deva Premal)

Duration: Approximately 60 minutes.

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Today’s plans: Lots of rest and reading.

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

Clark Middleton: Miracle Mile

RA Guy Adventures of RA Guy 1 Comment

Miracle Mile was a one-man play performed at the Theater Row in New York City during the Fall of 1997. The New York Times review called the play “an enriching chronicle of a man who refuses to let the world take him at face value.”

“Actor Clark Middleton wrote this autobiographical dramatic monologue in collaboration with Robert Knopf. Stricken with juvenile rheumatoid arthritis at age four, Middleton enacts his early painful experience — painful physically and emotionally. He takes us through an adolescence complicated by physical difference, his interaction with medical professionals over the years, and his craving to become an actor. Middleton struggles with the medical establishment, the pain and humor of coming-of-age, and ultimate self acceptance. Eventually, he was able to have both hip replacement surgery and a career in theater and film. The play is funny, poignant, and instructive.”

Video clips from Miracle Mile are available on the web page set up by New York University’s Literature, Arts, and Medicine Database, or by clicking on the image below.

MiracleMile

[The above quote and image are from New York University’s Literature, Arts, and Medicine Database, available at www.litmed.med.nyu.edu]

Walking, Step By Step

RA Guy Adventures of RA Guy 6 Comments

This post is dedicated to everyone who has participated in an Arthritis Walk, who is going to participate in an Arthritis Walk, or who has sponsored someone participating in an Arthritis Walk.

WalkRheumatoid Arthritis Guy loves to walk.

During high school I lived in an old medieval city in northern Italy. I would take the funicular to the walled upper town, pass under the stone gate with the winged lion of St. Marks (back in the times this city – Bergamo – was part of the Venetian City-State). I would spend hours walking around the narrow streets and along the top of the tall stone wall. The Alps were visible to the north and the plains of Lombardy were visible to the south.

When I was in college in New York City, I would take long walks starting on the (upper!) upper west side. Sometimes I would reach Lincoln Center. Sometimes I would reach Times Square. (This was back before the Times Square of today, when it was still the land of three-card monte, fake watches, and peep booths.) Once I even reached Battery Park at the tip of Manhattan. The best park of walking in New York City was that no matter where I ended up, I could catch a subway and zip back home.

In grad school, I would walk along the Charles River in Boston after the last snow had finally melted and the air had turned warm. (If I remember correctly, there were usually about two weeks of spring between the loooong cold winter and the arrival of summer’s mugginess.)

Once, while visiting Beijing, I abandoned the tour guide and the taxi and opted instead to use my feet and my map. (One of the things I enjoy most about visiting a foreign city is just walking around for hours on end and getting a true taste of the city – something that the main tourist attractions do not always provide.) This walk was one of the few times that I truely got lost, and the language barrier did not help a bit. Still recovering from jet lag and with the temperature hovering in the low teens, I somehow confused Guang’anmen Wai Dajie road with Guang’anmennei Dajie road.

This past March, my thirteen year-old nephew (he is a homeschooler, and is very interested in nature studies) and I hiked about 20 miles round trip in Pt. Reyes National Seashore, just north of the Golden Gate Bridge in Marin County. We spent the night in a small tent on a cliff overlooking the Pacific Ocean, in Wildcat Camp #7. (Hint: go during the week and chances are that you will not only have the best campsite, but you will also have most of the trail and campground to yourself.)

So since one of my favorite things in the world it to take a long walk, it can be quite a challenge for me when I go through periods where the distance I am able to walk quite limited.

Two days ago I went to refill my Arava. I took a taxi door to door (where I live, Arava is only available through the authorized distributor on the pharmaceutical company) and entered the office to buy my medicine. As luck would have it, the credit card machine was not working correctly, and I had not taken any cash with me.

I decided that since it was a sunny morning, I would walk to the nearest ATM machine – located about one large city block away. Every step I took caused a very sharp pain in my heel (later that day, my physical therapist would tell me that this a sign of plantar fasciitis, a painful (are you for real???) inflammatory condition of the foot). Eventually I made it to the ATM machine and back.

I don’t know if this is was sign of my slowness or a sign of the technician’s speediness, but by the time I got back a representative from the credit card machine company had already arrived and fixed the machine. Great.

As I look back on this walk of a couple of days ago, I am beginning to realize that this walk I took was wonderful, in its own certain way. I was aware of every step I took. (I had no choice, with the pain of every step.) While it may not have been as “grand” as some of the previous walks I described, I have no doubt that it will be a walk that I look back upon many times in the future. And I remind myself, that the pleasure of walking should not be measured by the total distance walked – but should instead be measured by the beauty of each step.

Please visit the Arthritis Foundation’s Arthritis Walk Web Page to find a walk event near you!

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