The Extra Mile Tour
This summer, Eugene residents Lanier Lobdell and Flaxen will embark upon a cross-country journey to raise awareness about Rheumatoid Arthritis and spread their message of hope and inspiration for people living with this chronic disease.
Lanier will be chronicling their trip with video and photo updates on “The Extra Mile Tour” Facebook Fan Page. We invite you to follow them as they make their way across the country and back again by becoming a fan today!
More Info: http://www.facebook.com/extramiletour?v=wall
Lipstick, Perfume And Too Many Pills
A sick girl’s quest for normalcy.
About
Sometimes the blog will be about nothing.
Sometimes it will be about heavy stuff.
Sometimes it will be a true story I made up.
Stick around and find out.
The blog’s URL comes from a Ray Bradbury quote:
We are cups, constantly and quietly being filled. The trick is, knowing how to tip ourselves over and let the beautiful stuff out.
About, redux
So. That other “About” page doesn’t really tell that much about me or about why I’m blogging. Still, it’s a link to a former blog, and in a way, a former self; the self that was too self-conscious and still too isolated to blog about my chronic illness. It’s a good reminder of where I used to be; hence. why it’s still up.
But, a little more about me now. I am a twenty-something reporter/copy editor/photographer/jill-of-all-journo trades living with (and sometimes dealing with) psoriatic arthritis, often referred to as PSA. At least by me, anyway. I’ve been working in the business for about 5 years and living with the symptoms of PSA for at least that long. (Coincidence? Hmph.)
I am married, with two furbabies — and don’t ask me if/when I’ll be having kid. It’s a pet peeve of mine.
I hope you enjoy what you read here, but I won’t be offended if you don’t. Being a journo has thickened my skin.
Read More: http://cupsquietlybeingfilled.wordpress.com/
About a month ago, I decided to go back to the gym. Over the past few years I’ve had an on again, off again relationship with the gym. If I had it my way, there would have not been any extended breaks during this time. Yoga has done wonders for my flexibility and my mental peace, and incorporating exercise into my day has allowed me to shed many extra pounds that I carried around for all too long.
One of my mistakes, however, as I struggled to manage both my rheumatoid arthritis and my exercise routine was that I often pushed myself too far. By wanting to do more, I just ended up being able to do less…and it frustrated the heck out of me.
But when I returned a few weeks ago, I did so with a new frame of mind. Rule #1: In everything I did, I was going to listen to my body. If my body told me not to do something, I was not going to do it. I was not going to return with some preset idea of what I should do. Instead, I was going to focus on what I could do.
And in a funny sort of way, I’ve actually been able to do more than I have been able to do in the past couple of years. Most mornings (and sometimes, in the evenings) I spend 30-60 minutes on the elliptical trainer. I spend an hour in yoga or pilates class. I started lifting weights…and I end my visit to the gym by spending a half hour in the sauna.
I’m at my lowest weight since finishing graduate school, which was more than ten years ago, and I’m within reach of my ideal weight. Physically, I haven’t felt this good in more than two years.
An interesting thing happened when I returned to the gym, after being absent for a few months. I had a couple of months credit on my membership (the gym has been very accommodating of my situation, and days that I do not go to the gym are not counted against me), so I needed to speak with the administrator – a lady who is a few years younger than me. This administrator knew the general details of my agreement with the gym, but did not know about the specifics of my chronic condition.
During this visit, she asked me what illness I lived with.
“Rheumatoid arthritis,” I told her.
And I’ll never forget the reaction on her face.
“I live with rheumatoid arthritis too,” she said.
And then, like a movie, scenes from the past couple of years flashed through my head. Images of her walking around with a limp, sometimes slight and sometimes very pronounced. I think there was even the use of a can now and then. Thoughts passing though my head, wondering what condition she lived with, but never asking.
Just like that, we started talking about RA medications and local rheumatologists. We compared wrists and fingers. She asked if I was afraid of living with rheumatoid arthritis. We talked about the pain, and how bad it can get in the hands. She told me that it was nice to finally have someone to speak with, someone else who understands what she is going through. She told me how family members have actually told her to stop limping, to stop faking. After years of living with these symptoms, she finally received a diagnosis a few months ago.
This morning, as I was on the elliptical trainer in front of the third-floor window overlooking the entry plaza, I saw this young lady walking in to work. Her limp was quite noticeable, and I could envision the pain that was resulting from every step that she took. I know what it feels like – I’ve been there in the past and I know I will be there again in the future.
But for the moment, and forever how long it lasts, I will continue to appreciate to the fullest every pain-free step I can take, every yoga posture and breath, and every repetition of weights that I can lift.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
FDA Adds Boxed Warning To Leflunomide For Severe Liver Injury
July 13, 2010 — The rheumatoid arthritis drug leflunomide (Arava; sanofi-aventis) has received a boxed warning about the risk for severe liver injury, the US Food and Drug Administration (FDA) announced today.
The FDA added a boldface warning about severe liver injury to the drug’s label in 2003 but decided to escalate it in light of an agency review this year of adverse event reports associated with leflunomide. The FDA identified 49 cases of severe liver injury associated with the drug, including 14 cases of fatal liver failure, between August 2002 and May 2009, according to an alert sent today from MedWatch, the FDA’s safety information and adverse event reporting program.
Read More: http://www.medscape.com/viewarticle/725038
Read More: http://www.medpagetoday.com/ProductAlert/Prescriptions/21145
Rheumatoid Arthritis Guy has been on Arava for more than a year now. I think it’s time that I start doing some research on inventing that bionic liver!
A few days ago, I experienced another one of my really bad flares. As my sensory inputs started to fade away and the pain took over, I thought to myself: How will I ever be able to describe to someone what this feels like? And then something interesting happened. I heard a voice asking me: Can you describe what it looks like?
All of a sudden, I started to experience one of my flares in a completely new way. Sure, it was just as painful as every other flare that has come before–but for the first time ever, during the most painful of all moments, I was finally able to focus on something other than just the pain.
As the flare subsided, what stayed in my mind was a variety of fascinating visual images. (Much better than the usual memories of pain.)
Just a couple of hours ago I experienced another flare. Once I was able to move again, instead of shedding tears, I decided to sit down in front of my computer and capture some of my visual memories from this flare. Here are the results:
I wonder, what will my next flare look like?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
New York Times Health Blog: Getting Joint Replacements Right
Although joint replacements are now routine, they are not fail-safe, reports Lesley Alderman in the Patient Money column.
Implants must sometimes be replaced, said Dr. Henrik Malchau, an orthopaedic surgeon at Massachusetts General Hospital in Boston. A study published in 2007 found that 7 percent of hips implanted in Medicare patients had to be replaced within seven and a half years.
The percentage may sound low, but the finding suggests that thousands of hip patients eventually require a second operation, said Dr. Malchau. Those patients must endure additional recoveries, often painful, and increased medical expenses.
Read More: http://well.blogs.nytimes.com/2010/07/02/getting-joint-replacements-right/
Last month, I had more episodes of forced stillness than I have had in a long time. Come to think of it, these were probably the most episodes I’ve ever had in a one month period. While most of my experiences stayed in the present, some of my memories from the past did resurface.
Right around the time that I was diagnosed with rheumatoid arthritis a few years ago, I had some of my first episodes of forced stillness. While my body stayed still, my mind was anything but. It felt trapped, and it wasn’t happy. It was doing everything possible to try to escape from the stillness.
While these episodes of this past month were much better (emotionally) than those of a few years, I realized that there was still much more that I could do in order to try to turn them into less traumatic experiences. During those moments, when I could not move or speak, I realized what was going on and my mind was relatively calm. It was afterward, once the ice seemed to melt away, that it felt more traumatic than ever. In a weird sort of way, the hours immediately after these episodes were more difficult to cope with than the actual episodes themselves.
So I looked at my meditation practice, and started to think of how many moments of complete stillness – physical and mental – that I have experienced while meditating. Sometimes these moments come during a session of dedicated meditation, while others come at the end of a yoga/pilates class while I am lying in corpse pose (savasana). The one thing that all of these different types of stillness have in common is that they are relaxing, refreshing, and renewing.
And in a way, they are “voluntary”. I decide when I want to enter into these moments of stillness.
I started to think…why not incorporate the best aspects from my moments of “voluntary” stillness into my moments of “forced” stillness. Better yet, why not remove the labels completely? Voluntary stillness. Forced stillness. What I am left with is just stillness. And as I have learned through my meditation and yoga practices, moments of stillness are often beautiful.
Sometimes, I will be able to decide when the stillness comes, and sometimes I won’t be able to decide when the stillness comes. When it does come, however, I will do my best to make it a pleasant experience. From now on, I will move into and enjoy the stillness, rather than fight against it.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“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!
