Heh.

Oh, Onion. You rock my world.

(I know, I know. Sometimes a malpractice suit is absolutely justified. But there are some big, big problems with the system, and I'm bothered by litigiousness in general. And no one can deny the Onion's inherent genius.)

Me in Two Words

Someone found my blog by searching "Enbrel Sushi".

Wow. I don't know what to say about that, except that this person appears to have seen into my soul and realized how much I depend on both.

Overheard in my Semi-Private Room

Some time ago, I was in hospital for a cardiac elecrophysiology study. The lovely bit about these is that you get to lie flat for 6-8 hours afterwards to protect the incisions in your groin. (Side note: Dear hospital food people. I know you were made aware of this, so thanks for the giant bowl of fettucine alfredo.)

When I started to get very bored, I found myself listening in on the various conversations taking place around me. Like when my elecrophysiologist came in to discuss the results of my roommate's ablation.

She'd come down to Toronto from somewhere in northern Ontario for the procedure. She was ever so friendly, and just slightly eccentric. When we weren't chatting together, she was glued to Montel Williams on her little television or discussing in hushed tones with her husband their mutual longing for a cigarette.

This is what I overheard:

"So, I guess I have to start eating better, huh," she said, sounding resigned.


"I think that's probably a good idea," EP Doc agreed.

"A no-cholesterol diet, right?"

"Well... not a no-cholesterol diet. But you can eat a low-cholesterol diet. Lots of fruits and vegetables, chicken and fish."

"But," she shouted, "I don't eat chicken! Or fish!

"What if most of what I eat is moose?"

At this point, my young and very urban EP was silent for a moment, before admitting that he "didn't know the nutritional content of those kinds of wildlife." Too bad they had the curtain pulled; I wish I'd seen his face.

I hope, wherever she is, she's back out in the bush with her husband, getting dinner.

What Not to Say

I just read Kerri's post at Six Until Me about some of the awful responses she's heard from people when they find out she has diabetes. It reminded me of some of the things I've heard when I've disclosed my illnesses.

There are the usual responses of "Oh, arthritis, that's when your hands hurt a little, right?", or "I have that! My finger hurts!" But this one was probably the worst:

"Woah. You have arthritis? That's going to make it REALLY hard for you to give birth!"

Uh... what?

I can't even remember what I said back to this person. Unfortunately, I think I was too surprised to think of a good comeback!

Wading Back Into the Paperwork Sea

This fall, I am applying to law school. I am terrified. Terrified! (Mostly of the other law students, because I can be a little shy and I have awful visions of everybody else being loud and shouty.)

When I told my rheumatologist this, I think she was torn. She wants to support me, to see me forge ahead in my career as if I had no obstacles. But the truth is, there are obstacles. The very biggest being the approximately $24,000.00 per year it takes to keep me functional (thanks, Enbrel! I love/hate you). Between graduating and starting my current job, I had coverage from the Ontario Trillium Drug Program, but it took nearly a year, 7 rejections, and lots of angry letters from my rheumatologist and me, to get it.

..

Without Enbrel, I am a wreck. I can hardly dress myself, let alone devote the many hours a day to studying and sitting in class that I know law school is going to demand of me. So although I don't apply until late October, and if I get in I won't start for another year, I'm starting the drug coverage search now; I've just shot off an email to see if there are any financial resources for me at any of the schools I'm applying to. And, sigh, I suppose I'll be getting in touch with Trillium again.

But hey, maybe all this paper pushing and arguing will be the perfect law school prep.

Fantasy Presents for People with RA

When I was a kid, I liked coming up with crazy ideas I thought would help me manage arthritis.

I wanted a long, rectangular plastic box with a leak-proof hole at one end, that I could fit my forearm and hand into. That way I could bathe my wrist and fingers in cool water while the rest of me stayed dry and I went about my business. I didn't really consider that a box of water might get heavy after a while.

I wanted, and still want, some kind of robotic book holder that could come down from the ceiling above my bed and hold whatever I was reading in front of my face and turn the pages for me, so that I didn't have to grip it.

I also wanted (and, ok, still want), beds instead of seats in the movie theatre. Although, yeah, that might be a little gross.

Now I want a big, square pillow to elevate my right hip and ankle when I'm sleeping on my left side. I don't think this is quite as far-fetched... I should be able to figure something out.

If you could have anything, anything you wanted to help you manage your arthritis, what would it be?

Golfing? Um....

I've been fretting about how to tell my employers about my arthritis since I started my job 6 months ago. I even struggled through a disastrous 10-pin bowling party to "welcome" the new hires (they couldn't have settled for 5-pin?). Everyone just thought I was an absolutely dreadful bowler; meanwhile, I was in serious pain and couldn't use my hands for days afterwards.

This morning, an email popped up in my inbox labelled "Golf!". My stomach immediately tied itself up in a knot. My fears were confirmed when I opened it up and began to read. Yes, I was being invited to join a golf team for a professional association we belong to. Great.

It appeared my hand was being forced. I sent a panicked email to someone who always gives me good professional advice, and was told just to be completely open about it. After all, they've seen that I always work hard and that I get the work done; arthritis doesn't affect my creativity or my writing ability.

So, I told my boss, and now he knows. It was the quickest, easiest, non-event ever. He asked me about it, then he said, "Oh well, we'll find someone else. But we'll have to get you a fun day off to make up for it!"

6 months of worrying for that. I guess that should probably teach me a lesson. When I think about disclosing illness, I worry about making other people feel awkward or sorry for me. I also worry about being made fun of.

This is pretty obviously a holdover from childhood. Kids can be mean. When I tried to take part in recess games or sports in gym class (I insisted on not being taken out of gym class - I just sat a lot of things out), I'd hear laughter and shouts of "Arthritis!"

Yeah... kids are mean, but not all that inventive.

I guess I haven't left that fear behind, even though logically I know the majority of adults are NOT going to make fun of me for having arthritis. They might feel a little weird, they might not understand it, but they probably won't taunt me as I walk by them in the hallway. I guess I have to give people more credit. Yes, they owe me their respect. But I also owe them my honesty.

New Friends

I have been volunteering at the Arthritis Society in my city for a few months, and I love it. I've met so many great people, and because most of the volunteers have arthritis, I never feel overwhelmed by the amount of work I'm asked to do - we all understand that we need to share the work and go at our own pace.

Last week I went to a lunch and photo-shoot for some of the youngest volunteers. They'll use the photos in their public speaking and information engagements, to show that younger people get arthritis, too. It was great - for the first time, I got to meet lots of people my own age with RA, OA and other types of arthritis.

It was such a supportive atmosphere. We were all at different stages; some of us in remission, some in bad flares. We helped one another and talked about our illnesses and how we deal with them.

Illness and all it entails actually felt very normal. One of us had trouble rising from her chair, and two others stepped in to help her. After the photo, we walked slowly back to the office, helping those that needed it. I felt completely comfortable in my own skin; if I'd needed help, I would have asked. If my posture wasn't so great in the photo, I didn't care. We all had our own unique manifestations of arthritis, but at the same time we implicitly understood one another. I can't wait to go back.

Choosing Enbrel

Yesterday, the FDA announced that Tumor Necrosis Factor (TNF) blocking drugs like Humira and Enbrel increase the risk of certain cancers in children and adolescents. Not surprisingly, this has resulted in a great deal of discussion in the RA blogosphere (and in the CBC News comments, which I had previously made it a rule not to read but which I got sucked into yesterday, much to my regret). I am seeing a lot of posts and comments painting all medication with the same brush; that it's dangerous, that it's the product of wholly self-serving, profit-motivated drug companies who don't care a jot for the patients actually using these drugs. So I thought I would write about my own motivations for taking Enbrel (this is partly drawn from a comment I made on Rheumatoid Arthritis Guy's fabulous blog):

I take Enbrel, and have been taking it for nearly 6 years. Without it, I can barely function. With it, along with a healthy diet and lifestyle, I am able to live a very full and active life.

I made the decision to take this medication knowing that there are risks, and I think this is something we should all have the right to do without judgment. It is, for me, a question of weighing the present definite quality of life benefits against the possible future risks. I have chosen to continue to take Enbrel because it allows me to do all the other things that contribute to my good health – exercise, cook healthy meals for myself, participate in the social, academic and career activities that make me happy and make me feel positive about the future. Particularly with my cardiac conditions, I need to be able to exercise to keep my heart strong. This is my choice, and it’s one I’m happy with. It is not the right choice for everyone, but we all deserve the right to make the decision ourselves.

Yes, I may be at a slightly elevated risk for cancer. But I’m also at risk of getting hit by a bus, falling down the stairs, or developing cancer anyway. If I’m unable to dress myself, brush my hair or cook my dinner without Enbrel, I’m at risk of depression, obesity, and a great many other things. Every day, we make choices that put ourselves at risk in the service of a greater benefit - by walking to work, by getting in the car, by going for a swim. It is impossible to live risk-free.

We hear so many negative stories about medications of all sorts, and I’m not denying that these exist. But the truth is that there are positive stories as well, like mine. I try to avoid reacting emotionally to claims that all medication is dangerous and evil, that it's the resort of those looking for a way to avoid really dealing with their illnesses. This is, I believe, wholly wrong.

It is not easy. It is not simple. Too many of us fight too hard to access these drugs to dismiss it like that.

Where young children are concerned, it is an even more agonizing decision for parents. I was 2 years old when I was diagnosed with arthritis. I can’t imagine how frightening it was for my parents. At the time, drugs like Enbrel weren’t around, so my parents thankfully didn’t have to make that choice for me. But I know that if they had, and if they had decided to give a drug like Enbrel a try, it would have been a decision made in my best interests and not without a great deal of thought. As it is, all of my not insignificant permanent joint damage occurred before Enbrel - I can't bend or straighten my knees to their full extend, I can't straighten my right arm or point my toes, and my wrists are entirely fused - they do not move.

I spent four weeks without Enbrel last winter. Having graduated in the fall, and yet to find a job, I had no health benefits to help me pay for it. My parents bought me a month's worth, but I couldn't ask them to do that again. My rheumatologist, meanwhile, fought with the Ontario Drug Benefit program to win me provisional coverage until I had heath benefits of my own.

For four weeks, I could hardly walk. I couldn't hold a telephone to my ear. My mother helped me dress and comb my hair in the morning. I tried to hide my pain and fear, but couldn't stifle an involuntary gasp when the sleeve of a jacket brushing against my inflamed wrist produced searing pain.

I choose not to put myself and my family through that, and for me, for now, Enbrel is the answer. It isn't right for everyone. But it's right for me.

Spreading the Word

Last night I had a lovely dinner out with a friend. I've known her for almost two years, and while she knows about my ICD because we were friends when I got it, she didn't know yet about my RA.

We were talking about volunteering, and I told her about some of the work I have been doing with the Arthritis Society.

"Oh, that's great!" She said. "Do your grandparents have arthritis?"

She was completely well-meaning, and I wasn't annoyed or offended, but I also didn't do what I normally would have, namely, tell her I have arthritis and then shrug it off as no big deal. Instead, I explained everything to her - about my own illness and about RA in general, and how it can affect anyone at any age. She was very interested and I think she really learned something about it. And I felt good for being open and honest with her, and hopefully spreading the "truth about RA" a little further.

Now hopefully I'll feel a little more confident the next time I'm faced with an opportunity to educate someone about the realities of RA.

A Thank You

Last week Rheumatoid Arthritis Guy blogged about his gratitude for the kindness of strangers. It brought to mind all of the many kindnesses I have received at the hands not only of strangers, but of the many busy doctors, nurses and hospital staff who have cared for me over the years.

Illness sucks; but it's also an opportunity to open our eyes to the goodness in others. I have so many people to thank:

My rheumatologist, who has been physician, confidant, and cheerleader to me for more than 6 years. Last year she worked tirelessly, in spite of 7 rejections, to help me obtain provisional government funding for Enbrel while I searched for a job after graduating.

The security guard who brought me a blanket as I sat alone in a hospital hallway awaiting a lung scan.

The nurse who stroked my hair when it took 6 attempts to start an arterial line in my wrist for my ICD surgery.

The nurses who propped my joints up on pillows before my electrophysiology study, so they wouldn't get too stiff and painful.

The kind and funny surgeon who let me lay my left arm (which won't straighten) across my stomach while he implanted my ICD, "as long as I didn't try to help him out with the surgery".

The cardiologist who prepared a boatload of documentation and advice for me when I went to Europe just a few months after getting my ICD, so that I could travel worry-free.

Jenny the pharmacist, who, after realizing I was on my own in a new city and newly diagnosed with a heart condition, called me at home to make sure I was handling everything ok.

These and many others have actually made me grateful for illness as an opportunity to be part of a community of dedicated and caring people. I think I'm pretty lucky.