Out Of Joint

outofjointOut of Joint: A Private and Public Story of Arthritis

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

She begins, in the morning, by casing her joints: Can her ankles take the stairs? Will her fingers open a jar? Peel an orange? But it was not always this way for Mary Felstiner, who went to bed one night an active professional and healthy young mother, and woke the next morning literally out of joint. With wrists and elbows no longer working right, she’d discovered one of the first signs of rheumatoid arthritis, the most virulent form of a common disease. Out of Joint is her account of living through arthritis, a distinction she shares with seventy million Americans. While arthritis pain affects one out of three Americans, this book is the first to tell the personal story of the nation’s most common yet neglected disease. Part memoir, part medical and social history, Out of Joint folds the author’s private experience into far-reaching investigations of a socially hidden ailment and of any chronic condition—how to handle love, work, sexuality, fatigue, betrayal, pain, time, mortality, rights, myths, and memory. Moving from the 1940s to the present, this story of one life with arthritis exposes little-known medical research and provocative social issues: alarming controversies over arthritis miracle drugs, intense demands concerning disability, and the surprising and disproportionate number of women affected by chronic illness. From this prize-winning historian comes a call for healing through history, a moving meditation on the way chronic conditions can be treated by enlisting the past.

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.

Period.

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

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My 5 Favorite Things About Living With Rheumatoid Arthritis

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!

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Nothing Comes Between Me And My MBTs

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!

*****

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.

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Survey: Partnership To Enhance Research Related To The Management Of Chronic Disease

Rheumatoid Arthritis Guy just completed this survey! If you are living with chronic disease or are the caregiver of someone living with chronic disease, please help by taking this survey. It only takes about ten minutes, and you can enter a raffle for a $100 Visa gift card.

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at:

http://chronicdisease.survey.sgizmo.com .

If you have a chronic illness such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so. If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.

Thanks to Lisa at Brass and Ivory and Duncan at Duncan Cross for helping to spread the word about this survey.

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