During every *major* flare, such as the one that I’ve been in for the past week, there come a point when–even though I don’t know how long it’s going to take for the flare to run its full course–I start telling myself how well I am doing. Yes, I know that my mind is ahead of my body, in terms of recovering from the damage of the past few days, and I know that my body is definitely still in a lot of pain (an understatement, if ever there was one)…but I have the feeling, that confidence, that no matter what the next few days might bring, I’ve more than likely–once again–gotten through the worst.

And on days like today, I really do (at least emotionally) feel good…and I’m convinced that this state of mind is going to help me pull through this flare just a little more quickly than I otherwise would.

Strangely optimistic words for someone who only 36 hours ago experienced pain of such severity, that he thought he was literally just going to keel over. And while such a thing obviously did not happen, I did have a stumble (not so much of a trip…it was more of a “my body just completely gave out” moment) that would have been much nastier had I not been standing right next to my bed at that moment.

I find myself in a really good mood at the moment, not only because I woke up with a feeling that today might be the day when I once again connected with a sense of good health, but also because two items early in my day confirmed that I was indeed correct in holding such thoughts.

First, even though I’m still in as much pain as I was yesterday, I’m not doing any worse…and it’s this second part that counts for right now…because I think we all know that during those moments when it feels like there is no way the pain can get any worse, it often does. Having gone through this cycle more than once over the past few days, it’s nice to wake up and feel like things are stabilizing a bit. This gives me the hope that things will indeed continue to get better in the coming days. It also gives me a much needed break, and allows me to finally catch my breath from the maddening downward spiral that is a flare.

The second reason why I’m feeling so good is because today I met a personal weight loss goal! I had originally given myself six weeks to lose 5 kilos (11 pounds). In the end, I only needed just under a month to do so. I certainly wasn’t majorly overweight, but I have definitely been carrying around a few extra pounds that were not helping any when my entire body was flaring, or even on more “average” days when I walk around with my crutches. My rheumatologist commented as much a month ago, during my last visit. I assured him that the next time he saw me, I would indeed be weighing less. And the timing of meeting my weight loss goal is extra-sweet because my next appoint with my rheumatologist is this afternoon!

So yes, I’m still in a major flare, but I’m already looking forward to the day when the pain and inflammation levels subside. My mind will continue to respect my body and what it continues to go through…but my mind will also do its best to gently try to guide my body back to a place of improved health.

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

While I understand that it can often be beneficial to adopt certain routines, I am not a big fan of the “routine life,” by which I mean having the exact same schedule five days in a row. Never have been, and never will. One of the first breaks I had from my rigid high school schedule in the U.S. back in the 1980′s was the year I went to live in Italy as an exchange student; high school over there was different in so many ways, including the fact that the schedule of classes was completely different each and every day. (One of the things I didn’t like was the fact that I had to go to classes six days a week, including Saturdays.)

A couple of years later, when I was only 17 years old, I left my home once again to go live in New York City as a college student. I absolutely loved the idea that there were multiple schedules to choose from for most of the courses. I remember classmates who boasted of not having any classes at all before 4:00 pm, while others were happy to wrap things up by 12:00 noon. My personal goal was to not have any Friday classes, which I pulled off a few semesters up until I started taking required architecture design studios, which always met M-W-F.

My quest for daily variety continued into my early corporate years. Even though I worked in an industry that prided itself with the flexibility that it provided to its employees, I once landed in a (huge) company which for some reason offered no flexibility, either in terms of schedule or in terms of being able to work from home. I still remember telling my hiring manager on my first day of work that I was going to set my own hours, and that I was going to work from home on certain days. Sure enough, within a couple of weeks my actions were causing a mini-ruckus as other managers started to complain. I still loved my manager’s response to these other managers, which she shared with me afterwards: “If you saw the quality of his work, you would stop complaining. I don’t care about when or where he does his work. I only care that he does it well.”

And within a few months, everyone in the company knew that if they needed to schedule a meeting with me, they needed to do so before 3:00 pm. (You see, I would start my day hours before the others, usually around 6:00 am. Back before RA entered my life, the early morning hours were often when I would feel most creative.) Even the president of my division would bid me farewell when our paths crossed in the elevator early in the afternoon. It was obvious that I was leaving the office for the day, and I had nothing to hide. I had just finished putting in another productive day as in information architect and software designer.

A few years ago, one of the most difficult aspects of living with rheumatoid arthritis was what I perceived to be the monotony. Living with chronic pain is bad enough, but living with what seems to be the same pain day in and day out can quickly become boring, on so many different levels. It can become even more boring when you’re not able to do as much (physically) as you were once able to do, and when days will pass without being able to leave the house. (Can cabin fever sometimes be an issue? Let me just say that it’s a good thing that I don’t have some big labyrinthine garden maze in my backyard, like they did on The Shining…haha!)

I still remember days when it felt like I was drowning in the pain. It was consuming my entire body, save for my head. (And the small part of my body that wasn’t being affected physically–my mind–was definitely being affected emotionally.) During one such occasion, the inflammation even entered into my jaw for a couple of weeks, one of the (luckily) few occasions during which this has happened. As this continued to happen day after day, I began to lose sense of the individual parts of my body, and of my self. I just felt like one big blob of pain.

This was right around the time that I started listening to Shinzen Young’s Break Through Pain, a book and audio cd which have since turned my life around. Track 3 is titled “Free-Floating Within the Discomfort”, and asks the listener to let his or her awareness be pulled to wherever discomfort arises in the body; once you are spontaneously pulled to one spot you are asked to label that spot (i.e. face, hands, whole body). After a few seconds, you should let your awareness be pulled someplace else, and then you should repeat the process, and so on, and so on.

Now I am sure that there are many readers who are asking themselves what the point is, as they will surely just label “whole body” after “whole body” after “whole body.” This is exactly what my first reaction was…but I was amazed that as soon as I started following this listening meditation, I really was able to detect differences–sometimes very subtle, but differences nonetheless–which allowed me to break up what seemed to be one monolithic block of pain into smaller, more manageable pieces. The first time that I was able to do so, I felt so empowered. What had for years seemed so overwhelming and massive was now something that I could indeed free-float within, and find the differences within.

This is a practice which I have continued to do on a regular basis, even although not always as formally as the guided meditation might suggest. It might happen over the course of a few days, as it did over my past few days. Yes, the pain is once again everywhere (except, thankfully, my jaws), but instead of thinking of it as something that it taking over my body (or my mind), I think of it as a beautiful lava lamp design that is different every minute, and every day. Just like with a lava lamp, there are times when the pain is definitely focused on certain joints: over the past week, I have had major crises (all on different days) in my knees, in my hands, and in my shoulders. Of course during those days there was still pain everywhere…but when it become oh-so-intense in some parts of the body, other parts start to go somewhat unnoticed. And just like a lava lamp that has been violently shaken for a few seconds, there are days when the pain seems to be equally distributed to a million different points around the body.

Whatever the case–and maybe this is where the designer in me starts to play a role–I’ve come to see this process as being somewhat fascinating. Painful, yes…but at least it’s one way of turning the overwhelming, repetitive pain into something that starts to hint a beauty: continually changing patterns, variety, and newness (even in the old).

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy