What I Did During My Recent Vacation

RA Guy Adventures of RA Guy

I went outdoors. I confronted the cold, head-on. I took deep breaths of fresh air. I stared at amazing cloudscapes. I sat below waterfalls. I hung out with llamas. I connected with my winter “vibe” (i.e. increased pain and inflammation). I started going to sleep earlier than usual—9/10 p.m., instead of my usual midnight…and found that the extra energy really helps come morning. I saw the sun set. I saw shooting stars. I saw the sun rise. I crossed the 20-pounds-in-2-months weight loss mark, thanks in large part to not just exercise, but also to my RA-induced meat and dairy dietary restrictions. (At this point I’ve eliminated all meat, dairy, and most sugars to great results, when it comes to managing my inflammation levels.) I played with my dogs. I started shopping for a new belt, my second in less than a year. I slept in a tent. I read. (Touch The Top Of The World by Erik Weihenmayer—a must read for anyone who is determined that they, and not their disease/health condition, will define their world of possibilities.) I drank coffee. I drank tea. I drank wine. I woke up earlier than usual. I slept in later than usual. I went to the gym. I went to physical therapy. I went to the coffee shop. I took photographs. I listened to Miles Davis. I lit candles. I lit incense. I had friends over for dinner. I connected with nature. I connected with my pain. I snuggled under the covers, and cranked up my electric mattress pad. I rested. I recuperated. I prepared myself for the next few months of winter. Most importantly, I told myself that everything is, and will continue to be, okay.

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

Painting On Life’s Canvas

RA Guy Adventures of RA Guy

Three years ago, right around this time of year, I came extremely close to ending my own life. Not only was my movement extremely limited, but I was also having extended periods of blurred vision. My RA was raging out of control, and the thought of finding a way through the pain and confusion seemed way too daunting, and way too scary.

I was right about one thing at the time, though: I was extremely empty inside. (I felt like my entire identity/self had completely disappeared.) I would eventually realize, however, that even these feelings were an opportunity. They were an opportunity to rebuild myself and my life; a blank canvas upon which I could paint away with my soul’s content.

And that’s exactly what I’ve done over the past few years, and it’s exactly what I’ll continue to do in the foreseeable future. Yes, my rheumatoid arthritis is still there each and every hour of each and every day…but instead of being the focus of my existence, it’s become a constant shadow, relegated to the sidelines. Life goes on…and each and every day, I am grateful to be able to see just how beautiful it can be.

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

Different Worlds

RA Guy Adventures of RA Guy

I live in two different worlds.

I go from the rigid grid of avenues and streets in Manhattan, to the steep sinuous roads that carve through the valleys of a dense metropolitan area up in the Andes Mountains of South America. I go from sea level to miles up in the sky, where the air is thin. I go from rectilinear, modern sykscrapers, to rough, jagged mountainscapes. I go from a land of rush and constant over-work, to a place of laid-backness and slow living. I go from having to plan social outings weeks in advance, to being able to call up a friend and say, hey let’s meet for coffee in an hour! I go from summer to winter, and from winter back to summer, all in the very same day.

Many things remain constant, however, no matter where I am…

Every morning is a lottery.

Some days I can move, and other days I can’t.

When I can move, I start off my day slowly. I play with my dogs. I draw open the curtains. I pull the broom out from the kitchen corner, and sweep the hardwood floors. I don’t see these as chores, or as tasks that “have” to be done. I see them as a way to slowly stretch, and warm up, my body.

I notice the subtle difference in ambient air temperature. I appreciate the constantly-changing angle of the sunlight that floods the house. I listen to the chirping of a hummingbird in the garden…and, if I pay careful attention, I feel the buzzing of its wings.

On the days I can’t move, I relax, and enjoy the warmth of my bed and the multiple layers of blankets that cover me. I listen to music. I think. Most importantly, I don’t stress out. There is nothing that needed to be done in the next couple of hours that can’t be done later, I remind myself.

I connect with the overwhelming pain in my hands, a pain that feels like each and every bone has been broken. Even though it feels like I will never be able to move again, I know I will. I drift back to sleep. I dream.

Someone very close to me was diagnosed with a chronic, autoimmune disease this past year. I can see this person trying to hide her struggle; I don’t know if she’s trying to hide it from herself, or from the rest of the world. Having been in that very same place for so many years, I know exactly what she is going through. I know she has some unfathomable hurdles coming up in her future, but I also know that she is and will continue to be okay.

I don’t call her “hiding” out, nor do I cast undue attention on what she is facing. I do check in on her regularly, and let her go through what she has to go through.

While all of us who live with these types of disease stand to learn a lot from others who are going through the same thing, the most important steps forward are usually of a very personal, individual nature.

We can’t do it alone, yet we have to do it on our own. (Just one of the many paradoxes that becomes a daily reality when our bodies no longer move on command, and when our minds race in the confusion of knowing, yet not knowing, what is going on…)

I don’t deny my pain, but I do build a mental block. Something…anything…to give myself a respite from the emergency alerts that my body continually sends to my brain. I take a deep breath, and start my day all over again. I feel the crunching of my joints, and the instability of my limbs. I slowly let the pain filter through, past the numbness. I connect with it.

I no longer label my day a “bad” one, because the pain “is still there.” I broke that chain of thought many years ago, and I am all the better for having done so.

This is my body.

This is my life.

I refuse to stop moving. I know that if I stop moving, even if for just a few days, the delicate balance inside that I spend so much time and effort maintaining will go out of whack.

And when it does eventually go out of whack, as it always does, I take a deep breath, I smile, and I say: let’s do this (find that balance) again.

I’m always just a few steps ahead of the pain and inflammation. This thought used to stress me out, knowing that this marathon never ends. I have since gotten used to it, though, and tell myself that all will be well.

And I no longer feel like I’m kidding myself, as I once did in the past.

Everything is indeed okay.

All is well.

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

Easier Said Than Done

RA Guy Adventures of RA Guy

A few years ago, I made a very concerted and intentional effort to change the focus of each and every new day. Instead of focusing on my pain and limitations, I would instead focus on what I *could* do.

I would focus on life.

As I adopted this new way of living—a way that has and continues to serve me quite well—I found myself emotionally unprepared for many of the reactions and comments that I received.

“Stop showing off,” or “you make me feel inadequate.”

“You’ve forgotten what it’s like to have RA”, or “I doubt you ever really had RA in the first place.”

“It’s irresponsible for you to talk about your decision to get off all medications,” or “you *can’t* get better…the only thing that keeps me going is knowing that I’m not as bad off as you are.”

I hold no anger or resentment to people who sent me such messages; in fact, my feelings are the exact opposite: I wish everyone well. And I hope that anyone who feels stuck behind this disease finds his or her way forward.

I *know* how hard it is to live with this disease, and I know just how completely overwhelming the pain and depression can be. I also know what it’s like to, on multiple occasions, have decided that it was time to end things, once and for all.

People often tell me that much of what I talk about nowadays is easier said than done, to which I would say: abso-effin-lutely. Finding a way to live well with this disease isn’t easy. But it IS possible.

And that is the thought that we always need to hold on to, no matter how rough things get.

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