Health Care Reform Superheroine

Marianne Hoynes speaks out at health care town hall meeting in Red Bank, NJ 08/25/2009

Hi RA Guy, I’m a fan. I have RA, Sjogren’s and fibro. I spoke at a health care reform town hall meeting from my wheelchair last night. I was hoping you would look at my youtube short clip. It was hard to state my POV with all of the hecklers, but I got through it. It is simply, my life as I live it now. Thanks.

http://www.youtube.com/watch?v=fsP5dkNF38w

Marianne,

Thank you for sharing this video. More importantly, thank you for speaking publicly at the town hall meeting. Your story is important – and is one that is repeated more times than most people could ever imagine.

Your courage shines through in this video.

Sincerely,
RA Guy

*****

For more background on the continually increasing cost of rheumatoid arthritis medications, please read The Battle Over Biologics.

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Wobbling Stack Of Plates

“Life is like riding a bicycle. To keep your balance you must keep moving.” Albert Einstein

Stack of PlatesYesterday was a rough day for Rheumatoid Arthritis Guy. All day long, I felt like everything was way off balance…sort of like a tall stack of plates that is beginning to wobble around. If there is anything good that came from the difficulties that I encountered yesterday, it was confidence in the knowledge that the tall stack of plates doesn’t always have to come crashing down.

Sometimes, it is possible to find a sense of balance when everything is out of whack. (Some of the feats we see in Cirque du Soleil are a breeze when compared to living with rheumatoid arthritis!)

I slept in until almost noon. The pain was everywhere – in my feet, in my knees, in my elbows, in my shoulders, and in my hands. For those readers who do already know, I currently reside in the southern hemisphere, which means that we are just coming out of a grueling winter.  During the past few weeks it seemed like we were cruising on our way to warmer temperatures…but yesterday the mercury in the thermometer dipped back down.

For most people coping with this change in weather is as simple as pulling out the thick jacket in the morning. For me, it means once again spending the entire morning trying to bring my body to the point where it will actually move.

I finally got out of bed in order to go to the lunch table. (The country where I reside still incorporates a long midday break in the workday, complete with a big lunch – the largest meal of the day.) Unfortunately, my sciatica was so inflamed that I could not even comfortably sit upright in a chair. So back to a reclined position I went.

The afternoon hours were some of my best of the day, a complete flip on most days where my afternoon hours are often the worst of the day. I spent an hour or so organizing that drawer (we all know that drawer…the one into which every paper and receipt goes until it is no longer possible to open or close the drawer, let alone squeeze in the last handful of papers in the upper slot) in my office, and even turned on the television to squeeze in some cheesy afternoon court tv.

By early evening, I was once again taking a nap and listening to my relaxation music. When I was woken up to eat a little dinner, I could barely feel the outer half of both hands. My feet quickly jumped into the mix, and before I knew it my upper and lower extremities were numb from pain and inflammation. I made it through dinner, but then the dam burst and the river of tears once again flowed.

And my mother, who is visiting me for a month, saw firsthand some of these realities of living with rheumatoid arthritis. While she has seen various effects during the past few years, she had yet to see anything like yesterday. I know it’s difficult for her to see, but I am happy to have her close by, and to have her learn how my illness has progressed since our last visit this past March.

I called my rheumatologist’s cell phone at 8pm. He gave me his home number and asked me to call him in thirty minutes.  We spoke half an hour later and I updated him on my past week and on my current state. He prescribed me four weeks of Prednisone, my third blast in the past four months. The first one was three weeks. The second one was two weeks. In this third one we are not only increasing the duration, but the dosage as well. He wants to try to stop this current flare as quickly as possible.

I’m soon going to start my sixth month of Arava. It’s been pricey, paying for it out of pocket…but the good thing is that I pay about 1/10th the price of what it costs in the United States. And on top of that, for every 5 months I get the sixth month free. Factor in this free month, and I’m paying probably 1/12th of what it would cost me in the U.S.

So this is where I am at the moment. Obviously now where I would choose to be, but since I am here I will continue to do my best to get through things. While the wobbling stack of plates does make me a little nervous, I will be okay as long as they don’t come crashing down.

And if they do, I’ll once again pull out my broom, sweep up the pieces, and put everything back together…little by little.

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

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New Blog: A Dad With RA

Ferhaan’s Blog: A Dad With RA

Welcome to my blog! My name is Ferhaan. I’m 35 years old, happily married, have a great three-year-old son and I have Rheumatoid Arthritis (RA).

RA is a chronic, inflammatory autoimmune disease that causes the immune system to attack the joints. It has been described as ‘a disabling a painful inflammatory condition, which can lead to substantial loss of mobility due to pain and joint destruction’.  I would compare it to ‘A shot at love with Tia Tequilla’; painful, debilitating and mind numbing. Something I could definitely live without.

Please welcome Ferhaan to the RA blogosphere! Ferhaan was one of my first online connections, as we are both active at the DailyStrength Rheumatoid Arthritis Support Group. Glad to see you blogging, Ferhaan!

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Kilimanjaro Ascent For Arthritis

kilimanjaro-dvd-coverIt was the challenge of a lifetime: a young Sydney man with arthritis and the world’s highest free standing mountain.

Matthew Leibowitz has ankylosing spondylitis – a debilitating form of arthritis but it wasn’t going to stop him leading 19 people in  an inspirational assault on Africa’s Mount Kilimanjaro. Among the group were Matthew’s friends – Jonathon Shapiro, Daniel Been, Peter Collins and Jeremy  Unger – his rheumatologist, Dr Jim Bertouch, and the Chair of Rheumatology at the University of Sydney, Professor Philip Sambrook, who filmed the trek.

They raised more than $90,000 for Arthritis Australia, proving life’s obstacles, arthritis included, can be overcome with determination and teamwork.

Free DVD Offer (Australian residents only): www.arthritisaustralia.com.au/index.php/news/133-kilimanjaro-ascent-for-arthritis-dvd.html

Arthritis Australia – For more info, please visit: www.arthritisaustralia.com.au.

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Evaluation Of Evidence

Around this time of the year nineteen years ago, Rheumatoid Arthritis Guy was packing his bags and moving to New York City. Earlier that year I had planned on following the footsteps of my older siblings by attending Texas A&M University. I had already paid my deposit to be an Aggie (Gig ‘em!) , when low and behold – I was surprised with an acceptance letter from Columbia University. I was going to be a Lion.

I was leaving Texas and going to the Big Apple, where they used funny words like “soda”. (Where I lived, everything was called a coke…as in Q:”What type of coke do you want?” A:”I think I’ll have a Sprite.”) and where you had to remember to say “iced tea” and not just “tea”, otherwise they would serve you this weird hot beverage.

So let me start off by saying that even though I had grown up in Texas, it was a good thing that football did not rank high on my list of features that I was looking for in a school. (Columbia holds the record for the second longest losing streak in college football, losing 44 games in a row during 1983-1988.)

One Saturday morning I took the long subway ride up to the football field at 218th Street, on the very upper tip of Manhattan. I was treated to a 4th down punt that went behind the kicker’s head, resulting in negative yardage. Needless to say, that was the one and only game that I attended during my four years of college.

Columbia is well know for it’s Core Curriculum, which encompasses most of the first two years of studies and which requires students to attend a wide array of classes ranging from literature, philosophy, writing, music, art, science, foreign languages, and yes – even physical education. (Note to newbie’s: do not sign up for an 8am swimming class, as I did first semester…I was smarter the second semester and chose something a little bit warmer: fencing.)

Today’s trivia: did you know that all students must be able to pass a swimming test before they are able to graduate from Columbia College?

Even though I had known for years that I wanted to study architecture, I had to be patient and first complete “the core”. I took history classes, one of which was titled “The History of Disease”. Even though I still have all the books dispersed on my bookshelf, I oh so wish that I had kept the course curriculum. Who knew at the time that disease would play such a major role in my future life?

I even ventured into a sociology class during my second year of studies. I think I was the only student in the class who was not planning on majoring in sociology, which actually worked to my benefit. You see – I studied alone for the first exam, since I didn’t really know anyone else in class. Most of the sociology students had studies with copies of the previous year’s exam, since it was well know to everyone in the department that she used the same exams every year. Well, the professor decided to change the questions, and not the format, that year. Most of the students didn’t even read the questions, and answered all the questions correctly for the previous year, but incorrectly for the current year!

The course was titled “Sociology V1205: Evaluation of Evidence”. This was a course in social science argument, an introduction to the way in which empirical data are presented as evidence supporting or refuting arguments in social science. The logic and procedures of research were discussed, with the goal being that students would become more discerning consumers of social science research.

Durkheim SuicideThe first book on the reading list was Suicide by Emile Durkheim, considered by many to be one of the groundbreaking books in the field of sociology. The first piece of evidence to be evaluated in this class was this classic study of the relative importance of the personal and social factors in suicide.

The design of this book has since been changed since I purchased my copy in the college bookstore. At that time, it was a simple bright red cover with one large word on the cover: suicide. For this in the know, this branded you as a sociology student. For everyone else, this branded you as an at-risk student struggling with the stresses of college life in the big city.

So while at the time I might have indeed been a little ashamed to be seen walking around with this book, I have now reached a point where I am perfectly comfortable talking about the thoughts of suicide that crossed my mind during the first few years following my diagnosis of rheumatoid arthritis.

I have never actively carried out any actions related to the suicidal thoughts that crossed through my mind – but I didn’t need to in order to feel absolutely terrified of what was going on. Initially I hid these feelings. Me? How could I possibly be thinking about suicide? But as the years passed and as these thoughts returned (they usually coincided with the worst moments in my flares), I began to realize that I was indeed thinking about suicide more often than I was comfortable with.

I would often break down on the phone as I called my sister to talk (luckily, she’s a psychologist, which means that she is very good at providing support during time of crisis). After asking if I was considering any particular method of attempting suicide (the answer was almost always no), she would reassure me that these thoughts were my pain speaking, and not my mind. The pain was trying to trick me, trying to slip thoughts into my mind of a possible “way out”.

And then one night, the 500-count container of ibuprofen that I kept on my nightstand started talking to me. I’ve never taken any psychedelics in my life, but if I ever did this is probably what it would have felt life. (How can a plastic bottle be talking to me?) I was at one of my lowest points, in which the pain was at its highest, and the bottle on my nightstand all of a sudden became one of my worst enemies. It sat there, smiling at me.

No, I never did take any more pills than was safe. In fact, the next morning I asked that this bottle be hidden away from my sight, and that I be given my doses one at a time. This experience did shake me up quite a bit though, and motivated me to reach out for professional support in the form of cognitive therapy – which I have since done.

This last occurrence of suicidal thoughts took place only a handful of months ago. I am happy to share that these types of thoughts have not since returned, even though I have reached my lowest lows and my worst pains during this period. I hope that these thought do not return, but I do know that if they do the best way to counteract them is to not be ashamed to share with others what is going on, and to once again reach out for support.

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

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