Respecting Limits
And this lesson, which I first heard decades ago when I was a bright eyed kid sitting in front of my first grade teacher, is finally being driven home to me today. The more I respect certain limits, the longer I’ll be able to fly. And the longer I’m able to fly without crashing, the happier and healthier I’ll be.
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Lifestyle Changes & Eliminating The Blame Game
Earlier this year, during the midst of what has definitely been my worst flare ever, something interesting happened: I suddenly realized how much time, energy, money, and hope I was spending on my desire to make my pain go away. And even though I knew, firsthand, the ravaging effect that rheumatoid arthritis often had on my body, for the first time ever I fully recognized how determined (stubborn?) I was to not make seemingly simple accommodations that would lessen the negative impact that chronic pain and disability had on my life.
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It’s About Us
“RA Guy’s website about living with rheumatoid arthritis is without a doubt the best RA website on the Internet. His posts about his personal journey through life with RA are thoughtful, life affirming, inspirational and down-to-earth. They’re also reliably factual about the disease and the drugs that treat it. He’s an excellent writer with a seemingly endless supply of post ideas. He inspired me to start writing a blog about RA–and I know that he’s inspired many others. He’s also given so many people with RA hope and made us smile even as we face sometimes awful, intractable pain and disability. There are lots of good RA and other autoimmune disease bloggers out there, but I can’t think of anyone else who blogs with RA Guy’s talent and all-out sincerity.” -Anonymous
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“You know you have RA is you’ve ever felt like calling it a day at 10:00 am.” —RA Guy

10 Things I’ve Learned From Living With Chronic Illness
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
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Socializing With Rheumatoid Arthritis
My little corner of the world, down here in South America, is quite different from the United States (where I lived most of my life, up until eight years ago.) First of all, it’s very social. (We put Spain to shame, in my opinion.) Events can take place any night of the week, and when they do it’s not uncommon for them to run into the early hours of the morning. Unannounced visitors are welcomed with open arms, and are accommodated no matter what the host’s original plans might have been.
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Turning Weakness Into Strength
As I continued to explore whether or not I was unhappy with the results of all of the major changes that I’ve made over the past half year, I had my answer. Even though I continue to have dips along the way, my entire personal health baseline has definitely been trending up, for the better. A couple of weeks ago I wrote on Facebook that living with RA makes everything ten times harder, but all that means is that I am now ten times stronger than I once use to be. Of course, I meant this in a figurative sense, and was referring to emotional strength. It’s nice to know, though, that this can also be applied to physical strength.
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“Okay, if my hands are going to hurt this much, could I at least have some cool Wolverine blades or something?” —RA Guy

RA To English Translations
Which got me to thinking the other day: wouldn’t it be nice to have an RA to English translator, to do the work for us when we just don’t feel like filling in all the blanks? For example, when I say that I’m having a really good day, this rarely means that I’m anywhere close to being pain-free…it just means that my overall pain levels are lower than usual.
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I’m Proud Of My Arthritis Hands
Not every person I encounter is going to be able to understand why my hands look this way, but those of us who do know the reasons will also know the truth: rheumatoid arthritis hands are a visible sign of the enormous strength of an individual who has experienced so much pain, that their hands have literally been pulled out of shape. I, for one, am proud of my hands. They have endured a lot, and will continue to endure even more. I will never be ashamed of them, no matter what they look like.
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How Do You Describe The Pain And Fatigue?
Captain Caveman beat me up in the middle of the night with his large wooden club.
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“Imagine having all your joints slowly pulled apart. Now, imagine not having to imagine it. This is rheumatoid arthritis.” —RA Guy

Hundreds Of Little Victories
And as I step into my room to change, the tears start to flow…not because of the next challenge, of having to undress myself, of having to undo what took so much effort to complete just a few minutes earlier before I left my house. These tears are flowing because I’m happy. I made it! The journey–from my bed to my front door to the taxi cab to the building’s front door to the office’s front door and finally to my physical therapy room–suddenly felt like one of the biggest accomplishments in my life. Each and every step was a sign of success; a reminder of the need to keep moving forward.
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Learning To Live With Chronic Pain
My relationship with my pain is changing. It’s changing for the better…and I couldn’t be happier, even despite the fact that my pain hasn’t gotten any better, and it certainly hasn’t gone away. It’s here to stay, and I’m accepting it into my life. I’m getting to know it as I’ve never done before. I’m finally allowing myself to listen to my pain, and—most importantly—to learn from it.
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Do You Ever Feel Like A Burden?
Chronic illness does place a huge burden on the person living directly with the disease, as well as their friends and family…but with the proper attention, and effort, these imbalances can be corrected. The solution may not always match what we’re used to, but there are ways to work things out.
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“You know you have RA if you’ve ever wondered how awesome it would be to have a bed in every room of the house!” —RA Guy

Autoimmune Wellness Center
As I commute from one place to another day after day, I often start to daydream. Wouldn’t it be nice to have all of these services in one place? After all, many of the biggest challenges that I encounter on a daily basis are often related to mobility issues. And, if I’m going to have to spend the rest of my life continually getting the health care that I need, wouldn’t it be nice to do so in an environment that places more emphasis on the “care” part and less emphasis on the “medical” part?
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Don’t Lose Hope!
Today’s post discusses the sensitive yet important topics of depression and suicide. I have received suicide letters here in the past both as emails and blog comments (never published of course), and my hope is that by sharing my own personal story, I might be able to help others who are struggling with these issues themselves.
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What’s Wrong With This Picture?
And before anyone gets upset, I am not trying to compare the diseases mentioned above, all of which are serious. I am merely trying to make a point about the uninformed comments and lack of awareness that RA Superheroes encounter on a regular basis. We have all received these responses, plus many others, at one time or another during our journey through chronic pain and debilitating inflammation.
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“When we talk about our rheumatoid arthritis, we’re not complaining. We’re sharing our pain, and we’re sharing our hope.” —RA Guy

Are You Talking About RA?
We must keep talking about the challenges that we encounter from this disease for which there is no cure. We need to describe the good, the bad, and everything in between. We have the right to vocalize the support that we are looking for from others, whether its from our family and friends, or from our governments. More and more people are listening. Are you talking about RA?
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Living Beyond Your Pain
About half a year ago, I was in really bad shape. My rheumatoid arthritis was out of control, and I could barely move. Seemingly simple things, such as taking a bath or walking around the house, started to become almost impossible. Mentally, I struggled…but I continued to stay strong. I’ve learned from experience that losing hope, especially during the middle of a severe flare, makes coping with the pain and disability even much more difficult that it already is.
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To Medicate Or Not To Medicate, That Is The Question
Rarely am I ever reluctant to discuss any topic related to rheumatoid arthritis here on my blog, but today’s post is the exception. It’s not that I am ashamed of what I am going to write about, it’s just that even though the words that I write here are often very personal in nature, I feel that decisions that I make on how/how not to medicate my illness are some of the most private issues in my life.
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“For me, a positive attitude doesn’t mean that I hope my pain goes away; it means that I hope to be able to cope with this pain even better.” —RA Guy

Expectations
I’ve been thinking a lot recently about expectations. Having done some reading over the past couple of years on the topic of Buddhism, I am familiar with the concepts of right view and wrong view. Right view is when we see things simply, as they are. It is an attitude of openness, where anger and fear almost fade away completely. The opposite of this is wrong view; a view that is characterized by expectations. Expectations (usually unmet) of how we wish things to be, and fear of what might be.
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Opening Doors
Sure, rheumatoid arthritis does and will continue to shut many doors…but there will always be bigger and better doors to open…we just gotta find them!
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Ups & Downs
Usually, the frequency of my blog posts is a pretty good indicator of how I am doing. When I write less regularly, I’m usually feeling better. When I write more regularly, I’m usually feeling worse. The reason for this is twofold. First, putting my challenging experiences down in words helps me process them and cope with them. Second, when I’m not doing so well I become much more bedridden, and am thus limited to certain activities which involve my computer, books, and an iPod.
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“Sometimes, no matter how bad my pain or fatigue, it’s nice to sit down, take a deep breath, and remind myself that everything is okay.” —RA Guy

Positivity: Counterbalancing The Negative
One of the things that I have learned and continue to learn is the importance of turning negative thoughts into positive thoughts. A couple of days ago, wanting a change in scenery during the afternoon, I transferred myself from the king-sized bed in my bedroom to the twin-sized fold-out sofa bed in my home office. (My three small dogs — cairn terrier, terrier/chihuahua mix, and pug — also thought it was quite a novel concept…each one quickly worked on staking out his or her spot on the “newly” appeared mattress.) As I lay there and put down my digital book reader to take a break, I marveled upon the literally thousands of books that I have amassed in the past decade and a half, since I was in college.
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Dear Me, Please Read This During My Next Flare!
During each flare, there comes a time when I know that I have once again made it through the worst. When I reach this moment, even though I still have quite a ways to go before I can fully declare such a flare to be over, I do notice that my bad times get just a little less worse, and that my good times get just a little bit better.
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Asking For Help Does Not Mean Giving In
I needed to start asking for help…not only here at home, but also in my workplace. In a way, this did feel a little like I was giving in, but then I asked myself: what’s wrong with trying to make things a little bit easier, especially when I’m in the middle of a particularly severe flare? I then immediately answered myself: there’s nothing wrong with this. Come to think of it, why would I not do so? Pride? Ego? Probably.
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“Living with rheumatoid arthritis makes everything ten times harder, but this also means that I’ve become ten times stronger than I used to be.” —RA Guy

Confessions Of An Optimist
But I proved myself wrong. My optimism does not mean that I no longer live with what can be at times unbearable pain…it just means that I have figured out how to get through it. Sometimes getting through it means giving in, being angry, being sad, and wondering what the hell it means to live a life like this, day after day. My secret is that I allow myself to experience these emotions without getting stuck in this place. Even if I don’t know why, I just continue to be positive and try to focus on the good. Trust me, it works.
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Little Sense Of Suffering Self
“When there are no reactions to the discomfort, consciously enjoy the restfulness. No emotional reactions means little sense of a suffering self. It means the physical body can be left to its own resources. It knows what to do with pain.”
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Living With RA Makes Me Strong
All of us who live with rheumatoid arthritis can work to change these attitudes and perceptions. If we continue to share our stories and talk about what it means to live with rheumatoid arthritis, awareness will continue to grow. If we continue to be open about the physical and emotional challenges that we face on a regular basis, then maybe – just maybe, others will start to see our ability to accept the limitations that rheumatoid arthritis brings into our lives as a sign of personal strength.
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“I got into a cage match with my immune system, and my immune system seems to have won.” —RA Guy

Breaking The (Pain) Barrier
One of my biggest moments of personal acceptance during these past few months, years into my journey with rheumatoid arthritis, has been accepting the fact that the pain is here to stay.
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50:50
One of the aspects of living with rheumatoid arthritis that has been most difficult for me to come to terms with has been the roller coaster fluctuations from good to bad. Sometimes these ups and downs take place over the course of weeks and days, and at other times they take place over the course of hours and minutes.
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What Being Disabled Means To Me
A few days ago, a long-time reader of this blog sent Rheumatoid Arthritis Guy an email, asking him how what he thought it meant to be disabled. I have asked myself this same question many times during the past few years, and felt like I did not have a good answer. However, I have been thinking a lot about this question during the past few months, and finally feel like I have come up with an answer. Whether it is a good answer or a bad answer is of less importance to me…what matters most is that I have an answer with which I am comfortable.
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“RA: No matter how much things are going wrong, there is still a lot that is RIGHT with our lives.” —RA Guy

Milestones
Rheumatoid Arthritis Guy, during his more difficult periods of living with rheumatoid arthritis, is often surprised by the comments and messages her receives from people who thank him for the optimistic attitude of living with RA that he shares here on this blog. Sometimes, when my challenges are big, I do not always recognize that sense of positive thinking and optimism within myself…so it is nice to be reminded by others that they are indeed present and visible.
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Looking In The Mirror
Living with an illness that is both chronic and crippling raises many challenges. One of the more obvious ones is the sense of self-image. I look at myself in the mirror, at my thinning hair, at my slight limp in my left ankle, and at my crutches. Five years ago I would have never imagined that any one of these aspects would have been a component of my self-identity…but now they are ALL a part of who I am. Just like this is my life, this is also the person who I have grown to become.
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Voices Of RA: The Mom
These past two weeks that I have spent visiting my son have been very special to me. I have always enjoyed my visits with him. I’ve been able to go with him to his physical therapist appointments and this afternoon I am joining him at his psychologist’s appointment. We’ve had the opportunity to do some light yoga exercises together once. I sat by him and cried with him one evening during one of his most difficult flare ups since I’ve been here. It isn’t easy (in fact it’s very difficult) to see ones son suffering in pain, still I wouldn’t have it any other way than to be here with him during part of this difficult period for him. At this point it’s all I can do – just to be here with him to offer whatever support my being here brings him.
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“Don’t let the pain keep you from enjoying what could easily be one of the best days of your life.” —RA Guy

Normalizing My Flares
I managed to enter this current flare without too much resistance or fanfare, and I think I’ll plan on exiting it in this same way. In doing so, I think I’ve found a way in which to make my flares just a little bit less disruptive. If they’re going to be a part of my life, I might as well get somewhat used to them.
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The Kindness Of Strangers
I could have reacted against each one of these actions, on the belief that I should and could do everything for myself. But I began to realize that a lot of people wanted to find a way to help, and the truth of the matter was that during my most painful moments these forms of help did serve in allowing me to exert slightly less energy and movement.
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Are You Petrified?
So, I will once again confront my fears. I will continue to remind myself that no matter what might happen, I will have the strength to get through it. I have done it before, and I can do it again. I will stay as positive as I possibly can.
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“12 noon is the new 8am – life with RA.” —RA Guy

XY With RA
One of the motivating factors in starting my blog, beyond the therapeutic benefits that I have written about in earlier posts, was the fact that I was having difficulty finding and connecting with other male voices of RA. Sometimes, it feels like the only thing more lonely than living with rheumatoid arthritis is being a guy who lives with rheumatoid arthritis.
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Survivor: Tierra Del Fuego
“Two (swollen) thumbs facing in the general upward direction” -Ebert & Roeper
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Wonder Woman, My Mentor
To all those women who have lived a lifetime with RA, please let me say that when I hear your words and your stories, I am inspired by your lives and by your strength. Please do not think that you are scaring me. During some of my most difficult flares this past month (which have been some of the toughest moments yet), messages and posts from people who have lived with RA for decades have flashed through my mind – and I often find myself thinking: If they can get through this, so can I!
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“Relinquishing control of certain aspects of my life has let me learn wonderful lessons that would have otherwise gone unrecognized.” —RA Guy

Out Of Joint
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.
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The Beauty Of Imperfection
Wabi-sabi is the term for a Japanese world-view which is centered on the acceptance of transience and based on a beauty described as imperfect, impermanent, and incomplete. The aesthetic principles of wabi-sabi include asymmetry, a roughness and unevenness of surface, simplicity, modesty, and the suggestion of a natural process.
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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.
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“Don’t you just love the meds? While Superman gets abs of steel, I’m left with a stomach that seems to be made of tissue paper.” —RA Guy

RA Guy Saves The World! (My First Blog Post From April 24, 2009!)
I hope to have fun sharing adventures of my journey through chronic pain and debilitating inflammation. My rheumatoid arthritis has undergone a major progression during the past few months, and I need to turn my daily routine of putting on and taking off my wrist guards and ankle protectors into something fun. Hence, Rheumatoid Arthritis Guy and his tungsten wrist guards and titanium ankle protectors.
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