Finding The Beautiful Patterns In Whole Body Pain

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

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More Chronic Illness & Inflammatory Arthritis Blogs

The Juicy Joint for Rheumatoid Arthritis
My name is Jill Tague and at thirteen months old, I was diagnosed with Juvenile Pauciarticular Rheumatoid Arthritis. RA is a chronic disease. It does not go away and affects every single aspect of your life. I am about to turn twenty-one and for the first time in my entire life, I am coming to terms with this disease’s longevity. It is forever a part of me, as it plays a major role in your life and all that you do. May this online journal help you gain further understanding of this disease and greater peace within.
Read More: http://thejuicyjoint.com/

My Journey Through Reactive Arthritis
I discovered that I had Reactive Arthritis when I was 19 years old and living in Brazil. It hit me as a result of food poisoning. I had no idea what was happening to me, I thought I had some sort of crazy tropical disease and I was freaked out. This Web site is my story about the journey through this realitively unknown disease and what I have done to deal with it’s symptoms and everything else it has thrown at me.
Read More: http://www.bnlsport.com/blog/

The Adventures of a Snowball in Hell
I’m a middle-aged working wife and mother with rheumatoid arthritis. Wait! Am I middle-aged? At 48, I’m probably past the middle. I’d be surprised I make 96, so I guess I’m…OLD. Hmmm…let’s say post-middle-aged. Yes, that sounds slightly more dignified.
Read More: http://snowballsadventures.blogspot.com/

A Day With Me & Arthritis
So what started as a pain in my finger suddenly started attacking me everywhere.
From my finger pain it went to swelling of hands, then pain in wrists, so bad i felt like i wanted to chop my hands off, i found i was constantly looking grumpy with my arms folded holding my hands tight under each armpit, why??? i don’t know just felt like it was doing some good, bizzare!!! I have learnt that there are a lot of bizzare things that happen with arthritis, i am sure these will be revealed along the way…
Read More: http://traluvie-adaywithme.blogspot.com/

My Search for Health
I decided to start a blog describing my journey from a completely healthy person to a chronically sick person trying to make it back to being a healthy person again. The journey has been long, but infinitely educational. It has strengthened me in ways that I never thought possible.
Read More: http://www.mysearchforhealth.blogspot.com/

More resources and blogs: www.rheumatoidarthritisguy.com/links/

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Arthritis Broadcast Network


The Arthritis is cured! (if you want it)
 – Canada’s leading National Arthritis Awareness Program (NAAP) – is designed to inform and provide insight to Canadians about the severity of this disease. The NAAP highlights access to the vast arthritis support network available to those affected by and living with arthritis.

This year the Program launches the Arthritis Broadcast Network (ABN): a platform to build relationships, enable conversations and share stories about arthritis. ABN programs include:

  • News: Arthritis news. Anytime. Anywhere.
  • Life: Living your best life with arthritis
  • Arthritis Intel: Helping you detect, treat, and manage arthritis
  • A-Team: Partnering with your healthcare team
  • Women: Exploring women’s arthritis issues and needs

More Info: http://arthritisbroadcastnetwork.org/

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Stacie Casey

Stacie Casey

Real Profiles of Rheumatoid Arthritis
Photos © Stacie Casey

Name?

Stacie Casey

Age?

41

Location?

Prague, Oklahoma, United States

How long have you lived with RA?

I have lived with RA since I was diagnosed at the age of 22, so that is 19 years. Although, I think I had it several years before my diagnosis.

What advice would you give to someone who has just been diagnosed with RA?

Take care of yourself! Often times others have no understanding of what is happening in our bodies and we have to be proactive with our health! Learn about your disease and find the best support you can. Keep moving as best you can and enjoy the good days.

Do you use any mobility aids?

I have used wrist splints in the past, but I’m able to go without them currently.

How has living with RA helped to improve your life?

I have developed a better sense of empathy for others. I have become more in tune with my body. I realize that I will soon have to give up teaching due to the degeneration in my spine, but I am super motivated to finish college! I graduate in May from grad school!

Do you have any visible signs of RA?

Yes, both hands have visible nodules in several knuckles. My right wrist is frozen and has very little range of motion. I have trouble with writing sometimes.

Can you please describe some of your favorite coping strategies for living with RA?

My family is very good to help me with anything I need, and I have found a great online community of people who are wonderful. My dog plays a big part too. When I am hurting or fatigued, it seems like he knows and he stays close.

Can you please describe your current medical (traditional and alternative) treatments?

I am currently taking Plaquenil, Methotrexate, Tramadol, and Folic Acid. The Methotrexate has been a life saver for me.

Is there anything else about yourself that you would like to share?

I would like to share my online hobby of t-shirt design! I design for Zazzle and Cafepress.

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Forbes: Abbott Petitions FDA To Prevent Humira Biosimilars

In a move that is sure to raise debate about the path forward for biosimilars, Abbott Laboratories has filed a citizen’s petition with the FDA in which the drugmaker asks the agency not to approve any biosimilar for its Humira treatment for rheumatoid arthritis. On what grounds? Abbott argues that the FDA would have no choice but to use trade secrets submitted to the agency when approval for Humira was first sought.

Read More: http://www.forbes.com/sites/edsilverman/2012/04/30/abbott-petitions-fda-to-prevent-humira-biosimilars/

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