Mestizo Baroque

MestizoBaroqueChurch

“A human being is only breath and shadow.” — Sophacles

Two years ago I purchased a Canon Rebel digital srl camera, with the idea of learning how to take photos in manual mode. As I mentioned in my last post, it was only this past week that I finally switched from fully automatic to manual mode. These photos are the first of many that I hope to take during my vacation this month.

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

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The Game Of Life

lifegameSoon after I was diagnosed with rheumatoid arthritis a few years ago, my world seemed to split into two spheres. Everything that I used to enjoy doing slowly seemed to fade away.

What used to be the present was now the past, and day by day “my life” became more and more distant. At a certain point, it became “my old life”. (Otherwise known as “my life before rheumatoid arthritis”.)

This was replaced by “my new life”. And what was “my new life”, you might ask? It was a world full of pain, disability, and depression. (This was definitely a case where newer did not mean better.) The more I struggled with my rheumatoid arthritis, the more my limitations seemed to grow and the less happy I became. It was a life in which my disease controlled everything. I was merely going along for the very unpleasant journey.

There was a solution, though — or so I thought. “If only I could do what I used to be able to do.” Then, everything would be better.

After a few years of constantly repeating the previous thought, I realized that something was not working. So, I came up with what I thought was a surefire solution: “I will go back to doing what I used to enjoy doing, as soon as my pain goes away.” (If you’ve already recognized the mistake in this sentence, give yourself an extra point!)

And after a few years of repeating version 2.0 of my mantra, I realized something new: the pain wasn’t going away. Like it or not, it was here to stay.

And I was suddenly confronted with an important decision. I could continue yearning for the life that I used to have…or, I could actually work on bringing it back. Sure, it wasn’t going to be exactly the same, as I would have to make some slight modifications here and there, but in its own certain way it would be new-and-improved.

I don’t remember precisely when, but sometime in the past two or three weeks I thought to myself “I have my life back”. As I had predicted, it’s not exactly my old life. It’s even better, though. It’s everything that I used to enjoy doing, combined with the new sense of self that has matured to include all aspects of my current life — even the rheumatoid arthritis.

It’s a world where I now know what a good “just push through it” is and a bad “just push through it” is. (Just one more of the continual contradictions that living with RA has bought into my life.) At the moment I can’t necessarily explain it in any more detail…it’s just something that feel.

During the past few days, I (finally) put my digital srl camera into manual mode, and climbed onto the roof of the oldest church in town to take photos. I took my longest walk in over a year. I listened to live music one night, and another night I went to a party to celebrate the coldest night of the year. I spent more time in the kitchen cooking. I went to a breakfast with my former yoga classmates…and the list goes on.

At the same time, I continued to deal with the symptoms of my rheumatoid arthritis. Just last night, my wrists flared all night long, waking me up at 2am and keeping my up until 5am. I got used to putting on my ankle braces every day. I worked really hard on trying to establish a more regular eating schedule, in order to assist my stomach as it adjusts to the increased doses of my medicines…and the list goes on.

My life is no longer something hiding in the past or waiting in the future. Once again, it’s in the present…and I am loving it, rheumatoid arthritis and all.

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

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Resilience

Resilience in psychology is the positive capacity of people to cope with stress and catastrophe. It also includes the ability to bounce back to homeostasis after a disruption. Thirdly, it can be used to indicate having an adaptive system that uses exposure to stress to provide resistance to future negative events.

Wikipedia: Psychological Resilience

Pick Up SticksI have a feeling at the moment, that if I could bottle it, would be more valuable than gold. Yes, the worst of the flare from the past month does seem to have passed…but it is by no means completely gone. Just this past weekend, after sharing that things were looking up, I was once again beaten up. (I’m not even exaggerating – I was down for the count, and the punches just continued to land…and land…and land.)

I’m not exactly sure what this feeling is, but I think it has something to do with learning how to pick myself back up, time after time. It comes with the realization that when it comes to rheumatoid arthritis, the stumbles that I encounter along my journey are both unpredictable and – to put it quite frankly – unexplainable. Most of all, it comes with the ultimate acceptance that these stumbles are not my fault.

With this understanding, I am able to focus all of my thoughts and energies on the most important thing when I find myself down in the dumps, which is to pick myself back up. I do this with the knowledge that I have absolutely no idea when I will fall again – it could be in an hour, it could be in a week. What I do know is that whenever it happens, I will be ready to pick myself back up. This counts for a lot.

I never though I would say such a thing, but here goes:

The next imminent flare, always lurking around the corner, no longer scares me.

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

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Actemra & Systemic Juvenile Idiopathic Arthritis

New data being presented at the European League Against Rheumatism (EULAR) congress demonstrates that RoActemra (known as Actemra outside Europe) is highly effective in improving the signs and symptoms of systemic juvenile idiopathic arthritis (SJIA), a severe childhood arthritis, where there are no currently licensed treatments.

More Info: http://online.wsj.com/article/BT-CO-20100618-700308.html?mod=WSJ_World_MIDDLEHeadlinesEurope

Actemra

ACTEMRA is a prescription medicine called an interleukin-6 (IL-6) receptor inhibitor. ACTEMRA is used to treat adults with moderately to severely active rheumatoid arthritis (RA) after at least one other medicine called a tumor necrosis factor (TNF) antagonist has been used and did not work well.

  • It works differently from all other medicines to fight RA, by specifically blocking the action of IL-6.
  • ACTEMRA is given by intravenous (IV) infusion about every four weeks. The infusion takes approximately one hour.

More Info: http://www.actemra.com

I’m just curious, has anyone tried Actemra yet?

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Things Are Looking Up

Things Are Looking UpThere are some days (today would be one of them), when out of the blue, I suddenly think: “Wow – the worst of this current flare has actually passed!”

Looking back at the past handful of days, I can see that I am moving a little bit easier in the mornings. My energy levels are still low and I continue to take naps during the evenings, but they are no longer the extra-painful events that they were just a week or two ago.

And while I still experience different types of pain throughout the day, it is back down to a somewhat mild level. I can definitely live with this.

This certainly wasn’t my first flare, and I know that it won’t be my last flare. But it was one more learning experience. One more chance to figure out how to manage and cope just a little more easily.

One of my most recent lessons learned: it’s better to reach out for help and emotional support sooner, rather than later. A person close to me in my life often reminds me that I don’t have to get through these flares alone, that I can and should reach out to those around me for help when I need it. During the lowest point of my flares, knowing that I am not alone makes a world of a difference.

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

P.S. Three final exams, seven major tests, presentations, projects, and dozens of quizzes later, my first semester of being a college professor ends tomorrow. I’ve already got a full course load scheduled for next semester…but for the next few weeks, I’ll be on winter break!

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