What Other People Think

RA Guy Adventures of RA Guy

Thinker RodinRheumatoid Arthritis Guy has been spending a lot of time thinking about why he cares so much about what other people think. It’s easy to say that I don’t lead my life based on what other people think. But the truth of the matter is, that consideration of other people’s opinions is always exerting some influence – big or small – onto my words and my actions.

I have realized that when I encounter some of the most difficult moments in my life with rheumatoid arthritis, that I often become extra sensitive to the thoughts of others. It’s sort of silly, no? Just at a time when what I should be focusing most on is myself, I instead find myself worrying about something that is, and will always be, out of my control – other people’s thoughts.

Maybe this is one of my defense mechanisms. Instead of confronting my grave personal issues on hand, I zoom in on what is essentially nothing more than a triviality. (I guess it’s sort of like watching an episode of Entertainment Tonight instead of the BBC World News.)

As I look back at some of my recent posts, numerous examples of this misplaced concern jump out at me.

What are people going to think when they see me walking with crutches? What is he going to think if I don’t offer to carry a grocery bag? Might my rheumatologist think that I am exaggerating the level of pain that I am experiencing? What can she possibly be thinking – why can’t she show a little bit more understanding of what I am going through?

All of these thoughts have one thing in common: I am swapping out my problems for other people’s problems.

What is really bothering me, deep down, are my own thoughts. The sooner I come to terms with this, the healthier I will be.

Yes, I have experienced first hand the hurt that comes when I think someone has not demonstrated what I consider to be an acceptable level of understanding about what it is like to live with rheumatoid arthritis.

But if I stop to think about it, there have been many moments – usually during my worst flares – where I myself don’t even understand what is happening to me.

So might this be what is actually hurting me the most?

Sure, my mind might be able to explain the logistics of the inflammatory process that is wreaking havoc on my body. At the same time, though, my heart might be completely overwhelmed by the emotional struggle that results from the presence of chronic pain and from the losses in mobility.

To put it quite simply, I can be completely lost.

And in order to re-establish my balance, I have to put all of my thoughts and energy solely upon what I think. I can not afford to lose even a little bit of strength by worrying about what other people think.

This doesn’t mean that I will never take into consideration what other people think. I am a social animal, after all. But I now know that when I am facing a true crisis moment, I deserve nothing less than the opportunity to not worry about what other people think – and to instead focus on myself.

As I continue to think about why I care so much about what other people think, I begin to understand that this is perfectly reasonable at times. No one wants to be that rude, inconsiderate person.

Depending upon the situation, the scales between “my thoughts” and “their thoughts” might need to lean just a little more to my favor.

And when it comes to my physical and emotional health, I’ll be happy to tip the scales even a little more in my favor.

But, no matter how far the scales are tipped, I will always make an concerted effort to keep my ears open to true words of advice.

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

Mr. Sandman

RA Guy Adventures of RA Guy

O sleep, O gentle sleep, nature’s soft nurse…
-William Shakespeare

PajamasRheumatoid Arthritis Guy slept in this morning. I hoped that by adding a few extra hours of sleep I might be able to charge my batteries a little bit more. That’s not how things ended up working out. Still, I was happy to be able to get the extra rest.

While I have always tried to make sure I get enough sleep in terms of quantity, I really haven’t looked too closely at the quality of my sleep – until recently. Looking back, I have no doubt that my rheumatoid arthritis has been having a negative affect on my restorative sleep for quite some time.

I have no problems whatsoever actually falling asleep – as soon as my head hits the pillow, I am usually out within fifteen minutes, if not sooner. My sleep patterns are pretty routine, except for the slight variation that one might expect on the weekend. And I usually wake up, without an alarm clock, at around the same time each morning. (Although my dogs do act somewhat as an alarm clock – it’s amazing the internal clock these pups have, especially when it comes to feeding time!)

It seems that the problems come when I an actually “asleep”. Take last night as a reference point. I woke up at least once an hour. These aren’t full wake ups, as I turn over and fall back asleep in the matter of minutes, but they are wake ups nonetheless – and they are probably preventing me from entering into my deep sleep cycles.

The tell tale sign comes when I actually wake up, though. More often than not, I wake up more tired than when I went to sleep.

I started thinking a bit more about sleep, and asked myself: How much sleep does a superhero need? This is what I found.

“I know that in the Dan Jurgen’s novel Death and Return of Superman it was mentioned that he needs only one hour a night, not to rest his body but to dream (for sanity’s sake).”

And…

“[Superman] doesn’t need to sleep, but he can induce it upon himself.”

Darn, I ended up in those comic book forum once again! Gotta stop doing that… (You should give it a try sometime – really – you wouldn’t believe some of the conversations that you’ll come across!)

So, I found a source that seems to be a little more appropriate to the situation. Living with Rheumatoid Arthritis, a Johns Hopkins Press Health Book (and the best resource I have found yet on living with rheumatoid arthritis).

Individuals with RA require more rest than they did before they developed the condition. Adequate rest takes many forms, including physical, emotional, and “local” rest (described below).

Getting adequate sleep is imperative, because sleep provides healing to the body and the mind. We recommend ten hours of sleep daily, particularly during periods when the arthritis is flared up. You may prefer to sleep eight hours at night, and take two one-hour naps during the day. If getting adequate sleep provides difficult, ask your doctor to recommend or prescribe pain or sleeping medications to help you.

Actual sleep is not the only way to rest physically and emotionally. Taking a fifteen- or twenty-minute break in the morning and afternoon can also make an incredible difference in productivity. Learning and performing stress reduction and relaxation techniques during tense times may be particularly beneficial. During these breaks try to relax your mind and body. If you can manage to lie down with your feet elevated, you’ll increase the benefits of the break. Deep breathing exercises can also markedly reduce fatigue, particularly if combined with meditation. Taking prescribed breaks routinely each day may allow you to avoid the severe exhaustion that occurs when you become overly fatigued.

From time to time it’s good to reflect on the day’s activities. Think about what you did during the day and when you felt most tired. This review will allow you to schedule your rest breaks strategically, which will help you avoid becoming overtired. If necessary, discuss these recommendations with your employer; he or she will probably agree that this is time well spent. It is to everyone’s benefit for you to retain your energy so you can be as efficient and productive as possible.

Local rest means resting specific parts of the body. Getting local rest helps you protect your joints from undue stress; this can be achieved by wearing splints. which can be fabricated to protect the wrists and hands, and by using techniques designed to reduce joint stress.

Starting today, I plan to implement the suggestions described above. I am already doing many of the activities, but on a more piecemeal basis. Maybe if I perform them with more regularity and mindfulness, the result might be that my energy levels start topping out just a little more closer to full.

What are some techniques that have helped you deal with the fatigue of living with rheumatoid arthritis? And more specifically, what has helped you overcome the difficulties that are raised by not being able to achieve restorative sleep during the night?

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

10 Years : 30 Days

RA Guy Adventures of RA Guy

A couple of weeks ago someone asked me how I cope with the financial concerns that often result from living with rheumatoid arthritis. From reading my blog, she had (correctly) determined that I currently do not have a full time job. This is my answer.

calendarRheumatoid Arthritis Guy has always had the habit of looking back a year.

It’s not something I do every day, nor is it something that results in me getting stuck in the past. Instead, it’s just a personal game that I have always played.

The rules of my game are simple. I try to think back and remember what I was doing approximately a year earlier. I can’t look at any old calendars nor can I refer to any archived emails to try to refresh my memory.

But I just decided to twist things up a bit.

Last night, as I was at my physical therapy session, I snuck a peak at the display on the machine that I was wired up to. I have always heard the long series of beeps as the physical therapist programs the device, along with references to upper and lower frequencies. 40-80. 90-10. Take your pick. I was fascinated with the fact that this therapy simultaneously delivers upper and lower frequencies, as opposed to one constant frequency I received years ago when my treatment used standard TENS machines.

So, I thought it might be fun to expand the upper and lower limits of the time span that I look back upon. If there’s anything that I have learned recently through living with rheumatoid arthritis, it has been to not only accept change but to have fun with it. So, instead of one year, I ended up with a time frame of one decade and of one month.

One Decade

Ten years ago to the week I walked across the stage at Harvard and received my masters degree in architecture. (This anniversary would have passed completely unnoticed had I not altered the rules of my game.) What a huge turning point of my life this time was! After eight years of college, I was finally heading into the working world, armed with my double Ivy League degrees. (My bachelors degree in architecture was from Columbia – what a blast it was to be an architecture student in New York City!)

I was full of hope, somewhat naive (okay, very naive!) when it came to internal office politics that would soon become a part of my corporate life, and definitely still unaware that my monthly student loan payment would soon be equivalent to a comfortable mortgage payment in many parts of the country.

I left the cold winters of the northeast for the cold summers of (foggy!) San Francisco. My career immediately turned into a dual track which included traditional architecture and user experience design/information architecture. Living in the heart of the internet and software boom, I thought it would be fun to overlay the physical design principles I had learned in architecture school onto the virtual design principles of the emerging field of web interface design.

Right around this time I started experiencing slight pain in my knees and feet. I just assumed that this was the normal aging process, and started taking supplements like glucosamine-chondroitin. I went to the doctors office a few times for x-rays, but they never showed anything conclusive.

One Month

Fast forward nine years and eleven months, and I find myself at the start of May 2009. I had just passed through the worst flare of my life – the exact days will stay etched in my mind for a long time to come. May 1 – May 3. My entire world shrunk down to periods where I took things minute by minute  – literally. Everything that I had previously loved was pushed aside in a heartbeat.

As I rode out (and continue to ride out) this recession, I was actually grateful that I was forced to drop my financial worries and instead spend all of my time and energy prioritizing my health care. All of my medical visits (rheumatologist, psychologist, physical therapist, acupuncturist, etc.) became my full time job – literally.  Last week alone added up to forty hours. Although, instead of money coming in – it ended up flying out faster than ever before. (I guess it would be too much to ask that my unpaid internship at Rheumatoid Inc. also provide health benefits?)

The results of my efforts of the past month are already paying off in ways that a salary never could. The lab results I took to my rheumatologist yesterday show improvement. Looking at my rheumatoid arthritis overall, it has gotten much better. I still continue to have “mini” flares about every ten days, but the severity baseline is trending down. (While these flares that I refer to are no way “mini” in regards to the actual pain and inflammation, they are no longer the life-altering events that they used to be just a month ago.)

I even got a bonus!  I was able to use the presence of rheumatoid arthritis in my life as a portal to get back into the world of art and design that I love. (I’ve even started to enjoy the art of writing, something that I have never really done before. As a designer in multiple fields, my work has always focused on drawing.)

My health will always come first. But, I now know that there is no need to push aside everything that I have enjoyed doing in the past ten years. I need not wait for another consulting engagement to appear, nor I need wait until my rheumatoid arthritis comes fully under control. I can go back to doing those things now, and I can do them on an even more personal level.

And as my health and happiness continue to fall back into balance, I have no doubt that improvements to my financial life will soon follow.

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

XY With RA

RA Guy Adventures of RA Guy

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!

The Rheumatologist Dating Game

RA Guy Adventures of RA Guy

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!