Interchangeable Parts

Celebrities With Rheumatoid Arthritis - rheumatoidarthritis - Health.com

2011-09-11T14:31:00.000-07:00

Interesting list, with reference to historical tidbits about RA.

Celebrities With Rheumatoid Arthritis - rheumatoidarthritis - Health.com

Please Donate Today to the Arthritis Foundation

2011-08-30T18:58:00.000-07:00

If you've seen prior noise from me about my upcoming Arthritis Foundation ride and thought "Sure, I'll chip in $10/$25/$50," the time is now! There's about ten days until the ride starts! I am oh-so-close to my fundraising goal!

To donate, click here and search by my name (Ellen Price).

I am participating in the People's Coast Classic, a charity bike ride to raise money for the Arthritis Foundation. I want to raise at least $2,300 because I was 23 when I developed auto-immune arthritis. I am riding because much to my suprise and delight, I still can. So for me, it's personal, but also about making sure there's information and resources for people who need them. This can range from having specialists available to community-based exercise programs.

The Arthritis Foundation is the only national not-for-profit organization that supports research and education on the 100+ types of arthritis and related conditions. There are over 50 million people in the United States with arthritis, including osteoarthritis and rheumatic diseases. This includes about 300,000 kids.

I met one of these kids at a party this weekend-- she's the child of a someone I know from college, and right about 20 months old. She is just coming out of being a sick little girl who 'just stopped moving' one day because the joints in her arms and legs were so inflamed. They were referred to one of the few pediatric rheumatologists in the Pacific Northwest after going through a hospital stay and a tentative diagnosis of leukemia. Her parents are just now sorting through their options for what they can do if she has another flare.

My ride will be from September 13-16, 2011. The goal for my team is $10,000, and nearly $150,000 has been raised via this ride to support the Arthritis Foundation.

For every dollar you donate:

49¢ goes towards funding research.
19¢ goes towards public education programs, such as Kids and Teens camps.
8¢ goes towards patient and community services, such as lifestyle improvement exercise programs.
4¢ goes towards professional education programs that update medical providers on the latest in arthritis treatment.
10¢ cents goes towards fundraising efforts.
10¢ cents goes towards administrative costs.

For more information on The People's Coast Classic Ride, visit the ride's site.

Happy Fathers' Day! A re-enactment of a trip to Oregon, with gnomes.

2011-06-19T17:00:00.000-07:00

Checking out bikes and contemplating a ride.


Encountering wildlife on a stroll near Mt. Tabor.

Checking out some Oregon procurement opportunities.

Meeting some office mates. Nice bow tie.

Touring the Capitol Mall in Salem.

Picnic on the Capitol Mall in Salem.

Catching the MAX.

Always an Opportunity to Provide Information

2011-06-13T22:32:00.000-07:00

I went to a chiropractor today. I'm not letting him touch me.

I stand crooked-- my left shoulder is cocked up, my hips aren't level either, and my legs are now different lengths. (Thanks, hip joints!) Then there's the matter of chronic pins and needles in my right foot, and the general crackling and crunching through my shoulders, and all the things that are shaking out as I'm getting used to the road-ish bike. A chiropractic visit couldn't hurt, right? My back needs love, too, and I had a Groupon, which was about to expire. I've been to one before, and good things resulted. So off I went.

I fill out the forms, 4 pages, and wait. The waiting room is full of literature I suspect would make me slightly crazy if I read it too closely-- it had that "cure yourself through positive thinking, and my magnetized water" vibe. I note the doc's name on a book titled something like "The Chiro Cure." There's a poster disparaging asprin. Awesome. I reflect upon the long list of strong possibly scary drugs I put on my form. This is going to go well. There was a bin for toys-- containing a bag with plastic vertebrae, actually-- which I begin to put together in random order. I make something of a star shape, and consider its potential as a trivet.

He calls me in to his office. First thing he says? I am too young for rheumatoid arthritis; he finds it troubling, and so tragic. I thank him for his concern, and explain that even kids get it so it's not just for older people. I get a moment of silence. We move on. He takes various measurements and runs me through some range of motion tests. I think it's odd that he doesn't have me take my shoes off, even though I tell him that I have a lift in one shoe. He pulls on my head, I can lift my legs. He pushes on my head, I can't lift my legs. I don't learn anything suprising or new. He makes "hmph" noises when I mention acupuncture.

Then there is some kind of 'muscle tension reading' on my back (it's not explained very clearly, but it is things on wires hooked up to a computer...). My reading pops up on the screen, superimposed on a line drawing of your basic spine. There's green arrows and a few red arrows down the left side, and a big black streak dramatically dashing out from the top right of the neck. These are the places where the computer says I am spinally troubled. The green is 'moderate,' the red is 'bad,' the black is 'worse than red.' I can neither agree nor disagree with the colorful results. I am offered, but do not receive, a print of the screen, and am told they're running a special on x-rays, which he says I need.

The chiro doc also tells me that RA doesn't affect the neck or spine, only osteoarthritis does and isn't it a tragedy I have that too, and I explain right back about synovial fluid and yes, RA can affect the neck, particularly the top of the neck, where there's quite a bit of synovial fluid. I get another moment of silence, and I can only hope he's making a mental note to Google all this later. And to perhaps not diagnose people based on incomplete information. Or tell them they're tragic.

I mention acupuncture again, if only to get a rise out of him. His clinic doesn't take my insurance, so I had an easy out. I declined the offer of paying out of pocket for x-rays and future treatment, and got a massage, which was wonderful. I couldn't help daydreaming about a West Side Story-style gang fight between chiropractors and acupuncturists. One side would have the world's teeniest blow guns.

Shouldn't a licensed medical professional who works on bones and joints at least know the basics about, say, bone and joint diseases? Perhaps I am just kind of nerdy that way. I am more than willing to provide tidbits from my vast collection of Rheumatoid Arthritis tidbits, but preferably not to someone intent upon treating me for anything, and certainly not when I am sitting around in a drafty exam gown.

I am still looking for a chiropractor.

Raising Funds for the Arthritis Foundation by Riding my Bike: Because I Can

2011-05-03T16:10:00.000-07:00

I am participating in the People's Coast Classic, a charity bike ride to raise money for the Arthritis Foundation. My ride will be from September 13-16, 2011.

I have had auto-immune arthritis for 15 years, better known as Rheumatoid Arthritis (RA). My particular flavor of RA is a bit of a cross between RA and Lupus.

The Center for Disease Control (CDC) estimates that there are over 50 million people in the United States diagnosed with arthritis, including osteoarthritis and rheumatic diseases, which is over one-fifth of the general population.

The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions. The Pacific Northwest Chapter covers Washington, Oregon and Alaska. The Arthritis Foundation is the largest private, not-for-profit contributor to arthritis research in the world. The foundation provides public health education, pursues public policy and legislation, provides funding for research grants, and conducts evidence-based programs to improve the quality of life for those living with arthritis.

I am going to raise $2,300, because I was 23 when I developed arthritis.

How am I going to do this? I am going to ride my bike for four days, 210 miles, because I can.

I need your support. Please sponsor me for a day, or per mile. $25 dollars will sponsor me from Yachats to North Bend on Day 2, or equal $.12/mile for the whole 210 miles.

To donate, click here and search by my name (Ellen Price). A quick breakdown of how far your donation will get me is here.

For every dollar you donate to the Arthritis Foundation:

49¢ goes towards funding research.
19¢ goes towards public education programs, such as Kids and Teens camps.
8¢ goes towards patient and community services, such as lifestyle improvement exercise programs.
4¢ goes towards professional education programs that update medical providers on the latest in arthritis treatment.
10¢ cents goes towards fundraising efforts.
10¢ cents goes towards administrative costs.

For more on my 15 years with arthritis, click here.
For more information on The People's Coast Classic Ride, visit the ride's site.
And FYI, I am thinking of wearing a tutu.

Arthritis Foundation Fundraiser: Breaking it Down

2011-05-03T15:37:00.000-07:00

I am raising funds for the Arthritis Foundation as part of the People's Coast Classic Event. I will be riding my bike 210 miles over 4 days because I can. I've had autoimmune arthritis for 15 years.

Please sponsor me for a day, or per mile. $25 dollars can sponsor me from Yachats to North Bend on Day 2, or equal $.12/mile for the whole 210 miles.

To donate, click here and search by my name (Ellen Price).


People's Coast Classic
		Because I was 23 when I developed RA.
	GOAL →	$2,300	Per Mile→	$10.95	DONATION OF $__ IS:
					$25	$50	$75
Date	*I WILL bike:*	Miles	% of Miles	Funds Per Day	Donors per day	Donors per day	Donors per day
13/09/2011	Newport to Yachats	23	11%	$253.00	10	5	3
14/09/2011	Yachats to North Bend	73	35%	$805.00	32	16	11
15/09/2011	North Bend to Arizona Beach	69	33%	$759.00	30	15	10
16/09/2011	Arizona Beach to Brookings	45	21%	$483.00	19	10	6
	TOTAL:	210	100%	$2,300.00	92	46	31

				Per Mile, Each Donor:	$0.12	$0.24	$0.36

	Per Mile:	$0.05	$0.10	$0.15	$0.20	$0.25	$0.30
	Donation:	$10.50	$21.00	$31.50	$42.00	$52.50	$63.00

	Per Mile:	$0.35	$0.40	$0.45	$0.50	$0.55	$0.60
	Donation:	$73.50	$84.00	$94.50	$105.00	$115.50	$126.00

	Per Mile:	$0.65	$0.70	$0.75	$0.80	$0.85	$0.90
	Donation:	$136.50	$147.00	$157.50	$168.00	$178.50	$189.00

	Per Mile:	$0.95	$1.00	$1.05	$1.10	$1.15	$1.20
	Donation:	$199.50	$210.00	$220.50	$231.00	$241.50	$252.00

15 Years with Arthur

2011-05-03T10:24:00.001-07:00

Over the course of about six weeks when I was 23, I lost the physical capacity to drive my car, ride my bike, get up and down stairs, or get out of bed on my own. I couldn’t make my body work right, and I was on a new and unfathomable level of pain. Buttons were out of the question—couldn’t grip with my fingers, let alone close either hand. Socks required assistance—couldn’t reach my feet because every joint between my fingers and my toes was inflamed. Brushing my hair, holding a fork, and turning a doorknob (assuming I could get a grip on the object in question) all brought tears. It hurt to inhale too deeply. I had high fevers, every night, sufficient for ruining a futon. Walking for a few blocks was an exhausting accomplishment. Resting out in the sun—try to relax and get better!-- turned me blotchy purple and soon thereafter I would start to feel worse. Work? I could focus enough to sit, maybe get a few things done, barely the basics, before I would wear out.

Doctor visits and tests, and more doctor visits. Three inches of medical bills. Not curable. Manageable, maybe, with certain compromises, like not having children. Drugs came with rather alarming warning labels, caused my hair to start falling out, and added “unmitigated nausea” to the list. Mortality tables peaked at 10 and 15 years.

I’ve made it 15 years. A few visits back, my acupuncturist told me I was the healthiest he'd seen me. This is big news in my world.

There are new drugs, biologics, that are focused on a specific disease factor—TNF, or Tumor Necrosis Factor—and easier (inasmuch as science can tell, so far) on the body. You’ve probably seen the ads—carefully framed close shots of hands turning keys in door locks, or pulling on socks, or holding thin watercolor brushes or porcelain cups by their tiny handles. The voiceover says, “I want to get up when I want to get up. I want to button my own shirts.” There are people dressed for early morning physical activities, and they are smiling and keeping up with their friends. It is what my people want.

I have been taking these biologic drugs since just after they came out. I’ve had a form of Rheumatoid Arthritis (RA) for 15 years. You have my deepest sympathies If your knees are bad, or if your grandmother’s knees are bad, because of arthritis. However, you probably mean osteoarthritis, which is “wear and tear” on joints. RA is not that, but an immune disorder, and I leave it to your powers of Google to sort out and appreciate the difference. Don't spend too much time looking at the pictures of either.

My particular flavor of RA is a bit of a cross between RA and Lupus. It’s a chronic, incurable degenerative disease. It’s systemic, so while it does primarily chew away at my joints, it can also wreak havoc with some of my favorite internal organs (lungs, heart), my vascular and nervous systems, and my skin. When it flares up I can feel like I am sick with the flu, complete with sore throat, fever, and brain fog. I wake up with some degree of stiffness and pain most mornings.

Early predictions of severe disability and premature demise have gone unmet, which is, in a word, luxurious. Treatment protocols and options, and advice, continue to evolve, and I am no longer new to the parallel world inhabited by the chronically ill. So I am no longer in shock about it. I can often “pass” as a healthy person. I’ve learned to cover, and work around my RA. Not only have I trained my wrists to bend backwards again, but I can also move the bones in my hands back to where they belong when they slip out of place. I know to unscrew the lid of my coffee mug the night before. I have sort of learned how to pace myself, even though that’s contrary to how I am wired. My interpretation of body signals some would lump in with ‘pain’ has gotten more . . . nuanced. My ability to worry has gotten more specific. I have turned sun avoidance into an art form. I am very attached to my rheumatologist and my acupuncturist, who are both patient, kind souls. I can finally spell "rheumatologist" without having to look it up.

I have had periods of good health, and done things I wasn’t supposed to be able to do, like run for (most of) 4 miles, and more than once, and play what counts as team sports in fair Portlandia. I am back to biking for fun and transportation. I’ve been to Paris, and Hawaii, and Canada, and Mexico, and camping, and roller skating. A friend dubbed me “Queen of the Extracurricular Activities.” I design and sew clothes and costumes. I’ve done four cartwheels. I can have booze again, and prefer either bourbon or whisky with a touch of cold water, sometimes with ice. I volunteer for good causes. I’ve gotten a damn law degree, and my last employee review used the term “unsurpassed” to describe my work.

So this is all far from tragic. Fifteen years ago, perhaps it was, or could have been; it’s been a long time, there’s been a lot going on, I’m doing my best to avoid it. If you’re around long enough something’s bound to get you, and immediately and with great force jack you into mourning and redefining your sense of self whether you’re ready or not. One adjusts to a new reality, and adapts, because there’s not another choice. This is, at least some of the time, just my thing, or one of them. I have gained my gimpy footing.

Not that it’s been easy. I am not good at asking for help. I am unable to explain, when I am in pain or exhausted, that I have a very thin, oily layer of focus available to other people, and it is blotchy and full of holes. I don’t like when my doctor tells me I can’t do something anymore because it’s too risky for the likes of me. (I consider his list negotiable.) There have been times I’ve had to work less because of my RA, and a particularly dark period where leaving work and school entirely and applying for disability was a hot topic in my household. Projects I have to put down because of a flare sometimes get hurled into the trash. My blood boils when someone who doesn’t know me, my background, or my history tries to tell me about some quick cure or that my treatment choices are wrong. I could do without a certain co-worker being openly judgmental of the fact I don’t go into the office until 9am, sometimes later. It breaks my heart that if I can’t keep up walking with a group, more often than not they leave me behind without noticing. I lapse into explaining my morning slowness with a “well, I’ve never really been a morning person.” And then I remember how I would bike into work at 6:30am, no problem. Or at least I think that was me. It’s been awhile.

There was a day a few weeks back when I got out of bed, got ready, and went to work. I was the first one there for the carpool. I was ready to go get my job on. I may have been perky. It was simple and wonderful and strange.

Back in January, my wonderful wonder drugs stopped working. It hit me hard, way harder than my usual fluxuation of symptoms. If I was awake, I was in neck-to-toes pain. I could only sleep for as long as the narcotics were in full swing, and only for that long. There was a dentist drilling in my right hip, without novocain. Pushing an elevator button drove a spike of sharp pain all the way up my finger through my shoulder.

For example.

I think it’s impossible to accurately convey the sensations of a flare. I’ve tried, but I think it’s too much like trying to explain what having a snowball ground into your face feels like. You’d not appreciate the effects unless you directly experienced the full, if you will, impact. So you either get it, because you’re going through it, or you don’t, but it’s clearly in the “bad scary painful things” category.

The biggest monster a bad flare can bring out is fear: fear that the flare will do something irrevocable to something important, like an artery in my brain, that this flare can’t be stopped, that it that this is the proverbial “it” and I can kiss my happy little lifestyle goodbye, immediately and permanently. The longer one goes on the more I calculate what needs to happen if I can’t work (rent, medical care, pets), and how long I’m going to be able to stand it before I pitch myself off a bridge. I get fogged in. I can stop understanding why anyone would waste their time with me. I stop talking. I don’t answer the phone, or messages. I don’t have anything good to say and anyway it hurts to hold the phone and doing so will make my hand go numb. Forget non-critical typing. I go to bed and hope the monster gets back under it.

January's bad flare had me cornered: I’d been up the scale of treatment through 2 TNF inhibitors, and nothing else really worked that great for me, including methotrexate. Drug therapies I haven't tried include methotrexate as an adjunct, so those . . . weren’t really sounding like options. The rheumatologist looked Concerned, which is never a good sign. I switched back to the first TNF inhibitor I’d been on, as it was possible my arthritis no longer had a work-around for it. So back to the Enbrel, and waiting 4-6 weeks to see if it would work. Prednisone and more frequent acupuncture visits ruled the calendar. Time moved slowly, with patches of it simply disappearing. I stopped feeling so horrible. I went on a light hike. I got better. Then I went on a 39 mile bike ride. The boyfriend and I planted a garden. So I’m back, and front, and a little more twisted.

When I first got sick 15 years ago, I became obsessed with small airplanes, and learning how to fly one, if only because every drug I took came with the notice that I wouldn't be able to get a pilot's license so long as I was on it. I went to law school despite, or because, it was going to be particularly hard. I still have all the bi-plane memorabilia my dad, being my dad, gave me while I was completing that degree. (The airplane thing has evolved into metaphor, and I'm fine with that.) What sounds difficult and particularly terrifying now? Going on a day long bike ride and getting stuck somewhere because of my RA, or wearing out, or being too slow, and getting left behind. So me and my 15 years of RA are going to go on a little bike ride in September: 4 days down the Oregon coast, 210 miles. It's a fundraiser for the Arthritis Foundation, which supports education, health programs, and research on the more than 100 types of arthritis, including the type I have. You'll likely hear more about that from me later.

And, for what it's worth, I intend to be an entertaining busybody of an old woman, well into my 90’s.

The Bike Project: Begins!

2011-05-03T10:18:00.000-07:00

Old bike acquired, via Craigslist. It's a 1990-ish Univega "mixte" frame, steel with aluminum bits. I think it's mostly all original parts, including the seat. (ouch.)

Now on to fixing it up for me to ride: bars, shifters, seat, gearing, chain, other bits! Oh, and I want it to be the color of a blood orange, with pink glitter.