XY With RA

Today’s post is dedicated to all the men out there
who are living with rheumatoid arthritis.

Superman1

Rheumatoid Arthritis Guy has been wanting to write, for quite some time, about what it is like to be a guy living with RA. I originally thought that I might alienate some members of my predominately female audience if I spoke about this too early on, but now I know otherwise.

Many aspects of living with rheumatoid arthritis do transcend gender differences, and it is easy to relate to the words of someone else who is going through the same thing, no matter if they are male or female. But still, there definitely are perspectives that are unique to women living with rheumatoid arthritis, and there are perspectives that are unique to men living with rheumatoid arthritis.

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.

It often seems like I cannot read an article on rheumatoid arthritis that doesn’t start or end by stating that this is a disease that affects women much more than it affects men. While I know that this is indeed a fact of rheumatoid arthritis, I can’t help but feel brushed aside every time I read something like this. It sort of feels like rheumatoid arthritis is just a woman’s disease. As a man who lives with rheumatoid arthritis, I am just part of an even more invisible minority.

When it comes to my personal identity, I am already a member of minority groups in more ways than one. So I guess it’s somewhat appropriate that when it comes to my chronic illness, I am once again part of a minority group.

Being a guy who lives with rheumatoid arthritis means that, when I am walking down the street with my crutches, people often assume that I a dealing with a sports injury.

Being a guy who lives with rheumatoid arthritis means that, when I am unable to help carry a bag of groceries, strangers around me often assume that I am being lazy.

Being a guy who lives with rheumatoid arthritis means that, on top of the physical pain that I already have to deal with, I also have to deal with the emotional pain that comes from not fitting into societal constructs of “what it means to be a man”.

Case in point – headlines such as: “Rheumatoid Arthritis: Women Experience More Pain Than Men Do, Study Suggests“. (I think this is equally offensive to both men and women, by the way.) Do men experience less pain because they are stronger? Do women experience more pain because they are weaker? First of all, pain is a subjective and personal experience. Second of all, did anyone conducting this “study” ever stop and consider that men have a tendency to less readily admit to having pain?

I for one, have no interest in whether living with rheumatoid arthritis is worse for a man or for a woman. Each one of our stories is personal, and is not something that should either “more real” or “less real” based upon an individual’s gender.

And being a Latino guy who lives with rheumatoid arthritis mean that, in addition to bumping up against commonly accepted ideals of masculinity, I also have to deal with culturally distorted definitions of virility and chauvinism – otherwise known as machismo.

Come to think of it, I think Rheumatoid Arthritis Guy would make an excellent  lucha libre performer – I already have a cape…all I need is the mask!

Joking aside…

I find comfort in the knowledge that have always tried to lead MY life. Not conforming to (stereotypical) models can often bring up issues of its own, but I would not have it any other way. If I feel like crying, I cry. If I need to ask for help, I ask for help. I honestly believe that one of the biggest strengths any person can demonstrate is the ability to admit weakness.

In the end, the best part about being a guy who lives with rheumatoid arthritis (for me, at least) has been having the opportunity to learn that real strength has absolutely nothing to do with muscles.

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

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DisabilityLand

Disabiltityland Cover

In the spring of 2008, New York publisher SelectBooks joined with award-winning educator and author Dr. Alan Brightman to create DisabilityLand, “a groundbreaking volume that examines the landscape of disability from new, intimate and unusual viewpoints.”

DisabilityLand features NIAD artwork on the cover and throughout the book while “Brightman provides a tour through the landscape of disability where common and not-so-common sense co-exist and where people are seen for who they are rather than how they are stereotypically—and often pathetically—portrayed.”

Brightman explains, “kids and adults with disabilities live with, bump into, and wonder about people who’ve typically had little experience with others very different from themselves.” He adds, “I’ve been privileged to be involved in these interactions for many years. I’ve laughed at some, cried at others and was frankly flabbergasted by still others. Put disabled people together with non-disabled people, and all too often the unexpected happens together with the insightful.”

“DisabilityLand does not care about being politically correct. It doesn’t rely on euphemisms or platitudes. Rather, in stunningly frank language it conveys the experiences of disability in a candid and unprecedented way.”

The National Institute of Art & Disabilities (NIAD)

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The Rheumatologist Dating Game

Dating GameRheumatoid Arthritis Guy has an appointment this afternoon with his rheumatologist. Having gone through multiple rheumatologists in the past few years, it can sometimes feel like I am playing The Dating Game. My relationship with my current doctor is going well, but as you will soon find out, things haven’t always been so good.

Early on, I think I expected too much from my rheumatologist – and when things did not go well,  is was always his/her fault. But in the end, every relationship involves two people – and if I want to have an open and trusting connection with my doctor, I must be sure that I do my part in fulfilling my half of the relationship. (See, it really is like dating!)

The I-Should-Have-Broken-Up-Much-Sooner Date

With my first rheumatologist, I fell for the “you expert” and “me novice” routine. Although there is a lesson in every break up, and in this one my lesson was that it was I, and not my rheumatologist, who needed to take the ultimate responsibility for my overall health care.

Those of you who have read my 60-Second Guide to RA will recall that there is a section where I talk about my “Team RA”. This is the approach that I have recently adopted, to much success. Just at the corresponding cartoon showed, I am in the center surrounded by health professionals from different fields. At the beginning I used to think that I could take a back seat and let my rheumatologist drive. But now I know that I had things completely backwards.

I used to go to my monthly rheumatologist visit with a lot of unrealistic expectations and misplaced hope. “This time my rheumatologist will finally fix all of my problems.” “This time I will be able to finally get my rheumatologist to provide some validation of what I am going through.” It was always “this time“, and when my needs were not met, I was left to deal with deflated feelings – on top of my physical problems.

In the end, my break up with my first rheumatologist was pretty brusque. After almost a year of having my complaints of serious side-effects brushed under the carpet, I decided it was time to move on. I could no longer continue to receive medical advice from someone who felt that they knew my body better than I did.

For a long time, I felt that it was my fault that I had not spoken up sooner. I know, it was easy (especially early on) to be swayed by the medical and professional expertise that my rheumatologist seemed to convey. But, along with my realization that I needed to take the leading role, came the understanding that I will always be the only person who ultimately knows how my body is feeling. I know what works, and I know what doesn’t work.

The First Date From Hell

Ah, need I say more? (Who hasn’t been on the first date from hell?) A few months ago, I started asking around for recommendations for a good rheumatologist. I asked my family doctor. I asked friends and family. Among the responses I received, one name stood out at the top of the list. My hopes were high. How was it that I had not gone to see this rheumatologist before? With such a strong reputation, what could possibly go wrong?

As it turns out, lots of things went wrong. The worst of them being told by this rheumatologist that I looked good, and that in his opinion my biggest health concern was my slightly elevated blood pressure – not my “RA”. (I put that in quotes because I don’t think he actually believed that I had rheumatoid arthritis.)

After I managed to pick my jaw up from the floor, I told him that I may not be showing signs of permanent joint damage, but that my rheumatoid arthritis had recently undergone a pronounced progression – and that I was experiencing quite a bit of pain and stiffness. His response was that we should wait and see what my lab tests indicated…

Because what I am telling you is not good enough?

Mind you, I had not gone into his office looking for a diagnosis. I already had a couple of notches etched into my RA belt and years of treatment since my diagnosis. I was only looking for a new treatment plan that wouldn’t seem worse than the problem I was trying to fix.

I walked out of his office that afternoon, fully aware that I would never go back in. I never did. (A rheumatologist actually told me that my RA didn’t pose a concern because I looked good???)

As with any bad date, lessons are learned. The first lesson I learned was that I not let this bad experience set me back, and I would continue to look for a rheumatologist with whom I could be both comfortable and happy. I would not settle for anything less, even if it meant that I had to work through the entire list of rheumatologists in my city.

Then I got to thinking, what exactly what am I looking for in a rheumatologist? (Living with RA sure brings up a lot of Carrie Bradshaw moments…)

Someone who could provide me some validation of the pain and suffering that is often caused by rheumatoid arthritis? This might be nice, but if I stop to think, validation is an odd thing – and it often comes from places where we least expect it.

Someone who could acknowledge the emotional pain that I was going through, and provide me a few kinds words of support? That would be great. But isn’t this sort of like asking my electrician to fix my plumbing? The next afternoon I had my first session with my current psychologist. (This has been the best place for me to work through my emotional issues, not my rheumatologist’s office.)

Someone who could give me advice on what treatments I could implement beyond the realm of pharmaceutical options, such as acupuncture, exercise, and diet? Wonderful. But like I said earlier, this is a role that I need to step up to. I often hear many different and (sometimes conflicting) pieces of advice from different health professionals, but it is I, and not my rheumatologist, who needs to learn what works for me.

So what exactly am I looking for in a rheumatologist?

I decided that my needs were much more simple than I had ever thought. I wanted a rheumatologist who would oversee the pharmaceutical aspect of my overall treatment plan. This person needed to be able to prescribe medication and advise me on any possible side-effects. This person also needed to order and interpret lab tests.

My rheumatologist need not be a part-time psychologist, nor a part-time alternative health practitioner.  I would instead look elsewhere for professionals who specialize in these, and other, respective fields. In doing so, I would finally achieve my 360° approach to treating rheumatoid arthritis.

And in order to not fall back into the bad habits of my first relationship, I had to be able to communicate, with firmness, any side-effects or other issues that I was not willing to put up with. If I felt like my voice was not being listened to, I had to have the confidence that I would stand strong.

The Budding Romance Date

Things are going quite well with my current rheumatologist, who I started seeing a couple of months ago. Whether it was luck, or the fact that I walked into my first appointment with a revised (and realistic) list of expectations, I do not know. But, I now have a doctor who is very responsive to the words that come out of my mouth (he initially prescribed me methotrexate; after I told him I would not consider taking methotrexate again, he made a note and moved on), who is very thorough in my physical examinations (he even presses his ear up against my joints as he bends them), and who is very good at explaining things to me (in layman’s terms).

And, as is healthy in any relationship, I will continue to be appreciative of my good fortune – without falling head over heels.

My current rheumatologist asks if I am seeing a psychologist for emotional support. He inquires about my dietary habits. He provides me with both pharmaceutical and natural treatment options for protecting my stomach. He mixes together humor and seriousness, and he take his time (my visits average 30-45 minutes). But most importantly, he does what I need him to do – he controls my labs, he prescribes me medication, he asks about side-effects, and he makes modifications as soon as either one of us thinks that they are necessary.

Another thing he does, which I REALLY appreciate, is that at the end of each session he not only reviews my current treatment plan, but he also tells me the details of my future treatment plans. (My previous rheumatologists have all spoken about the need to not progress to the next step in the treatment pyramid too early – but they all stopped there.) My current rheumatologist tells me the same thing, but then he goes on to tell me a) what the next few steps will be in my treatment plan, to be implemented when necessary and b)what are some of the “emergency” plans of attach that we can use in times of crisis.

Going home with the knowledge that there are other treatment options that are ready to be rolled out (especially during crisis moments), should the current plan become less effective – is priceless. This has provided me with a peace of mind that I have never before associated with my rheumatologist.

So, this afternoon I return for a visit – happy with the fact that I currently have a relationship with my rheumatologist that is working well for me. I may have not gotten here overnight, but it sure was worth the effort.

If your think that current rheumatologist relationship might not be working for you, take a moment and ask yourself: What can I do to make things better?

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

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One More New RA Blog

RA and Me
Angela was diagnosed with rheumatoid arthritis just a little less than a year ago, and recently started writing her personal RA blog at the end of May. Married for 15 years, Angie and her husband have 2 kids, 2 dogs, and 1 cat. Please be sure to take a look at her blog!

P.S. Not to be confused with Rheumatoid Arthritis and Me. If you ever want to read an inspirational story of knee replacement surgery and recovery, this is the place to go!

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Sunday Break

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

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Portugal Pavilion built for the Expo Lisbon 98, designed by Alvaro Siza. Anyone who has stood under the concrete canopy knows firsthand what a truly wonderful experience this building is. I took so many photos when I visited…

Portugal Pavilion

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Have I ever mentioned that I am a dog person? I have an 11 year old female cairn terrier, a 6 year old female chihuahua/terrier mix (rescued from Hopalong Animal Rescue in Oakland), and a 1 year old male pug.

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Today I am going to catch up on my reading (I am juggling three at the same time), so I don’t have any new books to share at the moment. What are you reading?

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Brunch: Belgian waffles

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

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