Gooooooooool!!!

RA Guy Adventures of RA Guy

Soccer GoalRhuematoid Arthritis Guy loves sports championships.

Granted, I don’t watch the NBA finals anymore. (I just don’t have the time to watch so many games…) But I did follow this recent series on twitter…does that count?

And the truth is, for me baseball has never progressed much beyond a sunny afternoon outing to the ballpark – hotdogs, peanuts, and all. (San Francisco has such a beautiful park right next to the bay, no? I used to work right across the street from there…extended lunch break anyone?)

But if we talk about the Superbowl, I’m there! I certainly enjoy any excuse that allows me to make my homemade buffalo wings, kick back, and enjoy the game. The commercials are usually overhyped, so I really don’t look forward to them as much as some people might. The halftime shows are often entertaining. (Speaking of hype, remember the whole Janet Jackson “controversy”?) But in the end, it’s all about the game – and watching an exciting game is much more important to me than having “my team” win.

My only gripe, probably due to the fact that I have lived outside of the U.S. for many years, is the title of “World Champion” that is given to the winner of the Superbowl. (I think “National Champion” would be much more appropriate.)

The places I have lived in outside of the U.S. are Europe and South America. Being surrounded by what many people consider to be THE worldwide sport, it should come as no surprise that I am now a big fan of soccer. Already, excitement is growing for the 2010 World Cup in South Africa as national teams from around the world compete in qualifying rounds.

There’s nothing better than hearing that long drawn out “gooooooooool” as one team scores. No matter what is going on, everything comes to a standstill whenever this word is uttered. I was outside Milan during the 1990 World Cup, and every time Italy played, the city shut down completely, work day or not. Once I made the mistake of going to a restaurant in Buenos Aires as Boca Juniors played. It only took  about two hours for my food to be served, as everyone working in the restaurant was glued to the television for the entire duration of the game.

So as I start get excited about the World Cup matches that are going to be taking place a year from now, I turn my attention to something in my more immediate future: my near-term goals.

For a large part of my life, I have gone from one goal to another. Some accomplishments took days, whereas others took years. Some of my goals are complete (go to college, go to graduate school) and others are still a work in progress (yoga, lifestyle changes). Some are still completely untouched (have kids). Some goals are financial (slowly becoming less important), and others are spiritual (slowly becoming more important).  The one thing all of these goals have in common is that I have often used them to measure both where I am coming from and where I am going to.

Talking about goals brings up one of  my more personal challenges of living with rheumatoid arthritis. As my entire world continues to turn upside down, the whole notion of moving from milepost to milepost is no longer as simple as it used to be. (Heck, I don’t even know anymore if taking physical steps tomorrow is going to be easy or hard.)

For the past three weeks I have been telling myself: “Next week, I will reach a point where I can walk without my crutches.” As each new week arrived, I realized that I had not yet reached this point. In one regard I have indeed progressed, because in the past I would have pushed my crutches aside whether I was ready to or not. (I guess that I was most concerned with the appearance of  progress.) Even as I do the right thing by continuing to use my crutches, I do feel the disappointment of not having met my goals as expected.

I have been careful to not define a specific recovery point. I tell myself that what is important is to continue moving forward, even if I do have to take many steps back during the process. It would be nice to reach a point where my rheumatoid arthritis is in remission, but I am would rather not set myself up for feelings of defeat if this does not happen. I want to stay positive, while acknowledging that there will be negatives.

As I write this, I ask myself once again what “moving forward” means. My head fills with visions of pain-free days and joints that aren’t constantly popping. Being able to leave the house without crutches or a cane seems like an accomplishment. No longer having days where I have to remain within a short distance of the bathroom would be nice. But maybe, still, I am expecting too much.

So as I settle on what “moving forward” means to me, I end up with this: Taking care of myself as much as possible – body, mind, and soul. By this definition, I have been moving forward over the past couple of months.

It is easy to think that I deserve certain rewards for taking care of myself – such as walking without crutches in a week, or finally waking up one day without pain. After all, I have grown up with the belief that for every case of illness there will always be an achievable state of good health – as long as we take care of ourselves. (Get well soon!) I now know that when dealing with chronic illness, this is not always the case.

But maybe I should focus a little less on what I expect my rewards to look like. And in doing so, I just might be able to finally see the many true and unexpected rewards that will no doubt come my way.

I now commit to live each day to its fullest, no matter what comes my way.

As I add this to my list of my personal goals, I find comfort in knowing that I need not rush to put a check mark in front of it and consider it done. As long as it remains open, it will serve as a constant reminder of what I need to do – each and every day.

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

Chutes And Ladders

RA Guy Adventures of RA Guy

Chutes and LaddersWhen Rheumatoid Arthritis Guy was a little kid, he loved board games. Board games ruled, even with their lost parts and all! The cardboard boxes that squished under the weight of air were a classic (leading to even more lost parts, as the stack of board games fell over anytime you tried to pull one out).

Don’t forget that this the 1970’s, back when “video game” referred to either Pong or some small hand held device with about six red LEDs and and an audio device that could produce nothing other than really annoying beeps. (I had hockey and my brother had football, but except for the lines painted on the screen they were exactly the same.)

Some of the board games required lots of skill, whereas others were won based purely upon luck and the roll of the die. There was never a thing as spending “too much time”, playing board games. This was partly based upon the fact that whenever you lost a game, you immediately changed the rules to “two out of three”.

One of my favorite board games was so full of suspense, yet so simple. Chutes and Ladders. (Some people may know it as Snakes and Ladders.) In order to win, you needed only to be the first person to reach the last square. Along the way you could land on a ladder, which allowed you to climb up and gain spaces. You could also land on a chute, which forced you to slide down and lose spaces. Rarely was getting from start to finish a linear process, instead you continually went up and down along the way.

As I look back on this game, I being to realize what a  wonderful metaphor it is for living with rheumatoid arthritis. I haven’t been sharing too many details of the day to day progression of my RA, but lust let me say that there have been lots of ups and there have been lots of downs. (Luckily, the ups have outnumbered the downs.)

In the past, I often used to get discouraged whenever my “recovery” was not a steady straight line of improvement. Whenever I woke up and it felt like things had (once again) taken a turn for the worse, I just wanted to give up and throw in the towel.

During these past two months, however, I can’t say that I have particularly enjoyed the flares that continue to pop up – but I have definitely learned to make the most out of them. If I’m sliding down, I might as well throw my head back and enjoy the breeze as it passes through my hair. (By the way, I’ve yet to experience any hair loss from my meds…yes!!!)

Once I get to the bottom, I will have ample opportunity to get back on my feet and climb back up the ladder.

Three steps forward and two steps back can sometimes seem like a strange way to move forward, especially in this modern world that is so fascinated with “efficiency”. I’d rather think of it, though, as going up and down chutes and ladders. After all, who didn’t enjoy coasting down the slide on the playground when they were a little kid?

(On a personal note, I’ve had lots of experience falling down slides. Once of my earliest home videos – 8mm back then – shows me cautiously climbing up the backyard slide. I was so young I was still in diapers. I reach the top and stand up with pride. The video stops suddenly, and when it starts again I’m lying on the grass crying my head off. I had just taken one of my first major tumbles!)

As long as I don’t hit that one mega-long slide that everyone was always afraid of in Chutes and Ladders, everything will be okay. But if my luck does happen to send me down this chute, I won’t forget that amongst all the ladders on the board, there was also that mega-tall ladder!

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

The Neverending Story

RA Guy Adventures of RA Guy

Reach the stars,
And fly a fantasy,
Dream a dream,
And what you see will be.
-Theme song from “The Neverending Story”.

The Neverending Story 1997 EditionRhuematoid Arthritis Guy has made some great strides during the past couple of months when it comes to accepting the chronic nature of his rheumatoid arthritis.

Even though I have already lived with RA for many years, I sometimes feel like I have only just begun. I think this is partly related to the denial that I continued to cling onto, up until only recently. (As I was written before, it is easy to believe that “after this flare” things will get better and the pain will finally go away.)

Connecting with other people who have lived with rheumatoid arthritis for decades has played a huge role in my acceptance. I am no longer able to hide behind my denial.

I must admit that accepting the chronic nature of rheumatoid arthritis wasn’t easy – it felt like a huge slap in the face. But, it was a necessary, and healing, step as I move forward in my journey with rheumatoid arthritis.

In a certain way, I have gotten quite used to the constant pain and stiffness. During the day, as I go about my activities, I recognize that these symptoms are there – but I do my best to not focus in on them, and instead concentrate on living a life that is as fulfilling as possible. At the same time, however, I have learned to respect these signals – and not push myself too far.

So for the moment, I have learned to live with the chronic pain and inflammation.

I just haven’t learned how to wake up to it.

During the past few days I have come to realize that whenever I wake up (either during the night, or to get out of bed in the morning, and even after midday naps), there is always one thought on my mind, and it’s always the same.

“Won’t this ever go away???”

During the day I have learned to work my rheumatoid arthritis into my life. When I wake up, thought, it’s there front and center. I still haven’t gotten used to this part. To be honest, it continues to be a startling jolt every time I leave my sleep and regain consciousness of my body.

A few months ago, I had an extended period where I was waking up without knowing who I was. It got so bad, that at times I didn’t even know where I was. My mind was an absolute blank, and more than once I was left completely shaken as I scanned the room trying to figure out who and where I was. The longest episodes lasted between 5-10 minutes.

(I was not on any medications at the time, so these lapses could not be blamed on medicinal side-effects.)

As I become more aware of the shock that waking up continues to have on my mind and body, I start to think that I just might have been trying to intentionally forget that I had rheumatoid arthritis when I woke up…but my mind didn’t stop just at that detail…it went on to forget everything else as well.

It “worked” in an odd sort of way, because during those initial few minutes when I was experiencing complete confusion, my physical pain did not register at all.

But as my memory came back, so did my pain.

As I try to move forward with various stages of acceptance, I focus in on a thought that often crosses my mind as I am falling asleep. This  thought  is on one hand so very subtle (in terms of my awareness that I am thinking such a thought) and on the other hand so very strong (in terms of the actual impact it has been having on me).

“The pain is going to be so bad when I wake up.”

(In a way this is true, with morning stiffness and all…but I don’t think this is the most healthy thought to carry into my sleep.)

Just like I have made a conscious effort to incorporate chronic pain into my day, I now know that I also need to incorporate it into the moment when I wake up – the start of my day. If something is never going to end, I might as well go ahead and make it a part of my life – whether I am awake or asleep.

(As as we all know, this is easier said than done. But, our biggest accomplishments often come when we put our mind to something – before we’ve even done what we’ve set forth to do…)

If you haven’t heard the theme song to The Neverending Story for a while (like in the last decade or two, as was my case), take a listen below. Don’t forget: “Dream a dream…and what you see will be.”

[YouTube Video: The Neverending Story, with lyrics.]

(Ahhh…there’s nothing like a flashback to the 80’s, is there!)

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

Sunday Break

RA Guy Adventures of RA Guy

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

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On the left, Legorreta + Legorreta Architect’s National Center of the Arts in Mexico City. I really like the use of grand forms and bold colors. (Legorreta was a disciple of Luis Barragan, one of my favorite architects.)

On the right, The House of Diego Rivera and Frida Kahlo in Mexico City, designed by Juan O’ Gorman. The pipes, furnaces, and window panes become the visual details in one of this early examples of functionalist architecture.

Mexico City Architecture

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My homeschooled nephew and I have (remote) science/reading lessons once a week. This week we will start reading A Wrinkle in Time. A classic, I know, but this will be the first time either one of us has read it.

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Saw a wonderful movie last night – Dean Spanley. It’s a classic shaggy dog story, so expect a slow buildup to a delightful finish.

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Forgot I had a Nintendo DS. It’s back on my nightstand, along with Professor Layton and the Curious Village. If you like brainteasters, this is the video game for you! Maybe I’ll get back into Brain Age as well…

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

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!