Down But Not Out

Superman Power ParasiteThe book that Rheumatoid Arthritis Guy is currently reading – The Sparrow – is a wonderful science fiction read that explores the ideas of relativity and long-distance space travel. As the cast of characters plan their journey to the Alpha Centauri world of Rakhat (they will be traveling inside a meteor!), they describe how time slows down for people moving close to the speed of light. Thus, the trip, which will appear to last over thirty years for people on Earth, will only seem to last seven months for them. (Don’t quote me on the specifics.)

Sometimes, this is what my RA mornings feel like – just a couple of hours for people on the outside, but an eternity for me. As you might have guessed from the title of this post, Rheumatoid Arthritis Guy is currently getting his butt kicked right now. I might be down, but I am definitely not out…even during those morning hours when I am experiencing so much pain and stiffness that I can barely even more (like today).

Every now and then I will have a moment of clarity, in which I tell myself that I wish I could be doing something else with all of this time. I used to feel like such a loser, finally rolling out of bed hours after everyone else. Not any more. I know that during those hours my body is fighting its strongest  fight, and that I need to give it the time needs to recover from the latest punches and prepare for the next round of punches.

I used to add to my anxiety, by telling myself that I wished this was over RIGHT NOW! Of course I wouldn’t wish to go through one extra minute of this…but I know that while this flare might not taper as quickly as maybe I would like it to, that it eventually will pass – I just need to give it time.

So this is where I find myself. I hope not to be here long!

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

Always Looking Up

Rheumatoid Arthritis Guy spent a large part of this past weekend reading. I have always loved books since I was a little kid, and continue to purchase them at a pace faster than I can read them. (I’m also coming off a couple of waves of new books – when someone from the U.S. comes to visit me and asks what they can bring, I always place a mid-sized order of Amazon books and ship them to their address.)

Come to think of it, reading is a perfect companion for many things, especially for chronic illness. As I tried giving my feet a rest during the past few days, and as my energy levels were extremely low, reading was the perfect activity to keep myself occupied. (I’ll also let you in on a little secret…one of my resolutions for the new year is to read more.)

Always Looking UpSo I finally got around to a book that has been on my Sony reader for quite some time:Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox. This book was reviewed quite a few times within the chronic illness blogging community soon after it was released. Instead of giving it another go round, I’ll instead highlight some of the parts that stood out to me most both for their optimism and for their ability to accept reality.

I was especially impressed by [Lance Armstrong’s] strength in facing his own ordeal and his recognition of the situation faced by others. The Lance Armstrong Foundation, although still relatively young, was already living up to its mission statement: “To inspire and empower cancer sufferers and their families under the motto ‘unity is strength, knowledge is power, and attitude is everything.'”

I considered Lance, along with Christopher Reeve, a role model for what I hoped to accomplish. There were both men who has met transforming challenges. Each had taken a negative and turned it into a positive. I didn’t have to let the terms of the disease define me – I could redefine the terms. And maybe in the process get a better deal for me and everyone else in my situation.

For weeks after Chris was hurt, it seemed that the press and public alike would never tire of strained allusions to his Superman persona and the “bitter irony” of it all. But while so many were preoccupied with the “superhero suffers real human tragedy angle”, few anticipated the actual flesh-and-blood hero Christopher Reeve would become. Chris defined hero as “an ordinary individual who finds the strength to persevere and endure.”

Let’s face it, the whole episode, unpleasant though it may have been, was a gift in the same way that I have described Parkinson’s as a gift. You suffer the blow, but you capitalize on the opportunity left in its wake. “The notion of hiding–this is what struck a nerve. Feeling the need to hide symptoms is so key to what patients of all kinds of conditions, but particularly Parkinson’s, have to face. We have to hide–don’t let anybody see, don’t let them think you’re drunk, don’t let them think you’re incapable, don’t let them think you’re unstable, you’re unsteady, you’re flawed, you’re devalued.

As I gained more intimate knowledge of myself, why I did the things I did, what my resentments were, and how I could address them, my fear began to subside. The same holds true for Parkinson’s. I feared it most when I least understood it–the early days, month, and years after I was first diagnosed. It seems strange to say it, but I have to learn to respect Parkinson’s disease. Instead of being reactive, I started being proactive, reading all the materials available, meeting with doctors, surgeons, researchers, and finally, after many years of lingering fear, getting to know fellow Parkinson’s patients and other members of the community. Respecting it, however, doesn’t mean tolerating it. And you can only vanquish an enemy you respect, have fully sized up, and weighed by every possible measure.

Chris Reeve wisely parsed the difference between optimism and hope. Unlike optimism, he said, “Hope is the product of knowledge and the projection of where the knowledge can take us.” If optimism is a happy-go-lucky expectation that the odds are in my favor, that things are likely to break my way, and if hope is an informed optimism, facts converting desire into possibility, then faith is the third leg of the stool. Faith tells me that I’m not alone.

And in case you were wondering – yes, I would recommend reading this book!

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

25 Years In Arthritis: New Treatments, New Hope

Biologics, Other Advancements Have Helped Those With Painful Condition

When MedPage Today contacted Dr. Joan Von Feldt to talk about the changes she’d witnessed in rheumatoid arthritis (RA) care in the past 25 years, she offered one piece of advice:

“I hope, in your article, you reflect the excitement that rheumatologists have in managing this disease, because it’s so much more satisfying,” said Von Feldt, a rheumatologist at the University of Pennsylvania.

In 1984, the outlook for newly diagnosed RA patients was grim: a regimen of often toxic drugs that might slow the onset of crippling pain, but not for very long. Younger women were advised to forget about having children because they probably would be too disabled for the rigors of motherhood. The best outcome for many patients was joint fusion or replacement surgery.

“Our orthopedic surgeon came around to our offices two or three times a week to just kind of check in,” Von Feldt recalled.

Today, although disease flares and progression can’t be prevented entirely, doctors can now tell patients to expect long periods of remission and the availability of many effective, nonsurgical treatment options when their current regimens begin to fail.

Read More:

Saturday’s Super Heroes

Saturday Super Heroes11:00 am Saturday morning – I have one hour to take a bath, get dressed, and head over to the local health clinic in order to get another Diclofenac injection. The silver lining to the situation is that even though a large number of joints are in pain, they are at least continuing to move. The fact that I am here squeezing in a morning post is proof of my confidence at accomplishing the above list within the next hour.

(And you know that you live with a chronic illness when you know the hours of the local health clinic by memory!)

A year ago I was anguishing over the fact that my periods of increased pain and inflammation – which normally used to last 4 to 6 weeks and appeared every third month like clockwork – no longer seemed to be following their usual schedule. (My first, and former, rheumatologist used to laugh at me when I told her that my rheumatoid arthritis followed such a set schedule.)

This year, I am going with the flow. I’ve learned not to expend precious energy fighting against the presence of rheumatoid arthritis in my body…it’s so much better to use that to help me get through period like the one I am in now. I’ve also learned not to classify a day as being a “bad day” just because rheumatoid arthritis is present.

Yes, my rheumatoid arthritis is more active than it usually is, and yes, my Saturday morning is going to involve going in to get yet another injection…but I know it’s going to be a great day!

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