Yesterday was something of a milestone in my patient journey. Three years since being diagnosed with CRPS, Complex Regional Pain Syndrome. Or RSD, Reflex Sympathetic Dystrophy, as it used to be known.
Whatever the name, it’s a horrible disease. Not well understood even within the medical community, it receives very little public awareness. There are so few people with this condition, that it doesn’t even have a disease awareness day here in Canada.
Three years of changes in my life, because of CRPS. I’ve already written about my patient advocacy and outreach activities, not only for CRPS but also for chronic pain as well as rare diseases. Like being a “Patient Partner” at a medical conference, and part of the scientific meeting’s official “Twitter Team”.
Those have been positive changes, allowing me to use my background – in bioethics, healthcare, and clinical/medical research – to help other patients. Which, of course, helps me to better deal with my own condition. Helping others always also helps me!
I’d planned to continue these activities, even after my own CRPS resolved, the medical word for when a disease goes away. Last May, I thought we were getting close to finally wrestling my disease under control; of resolving it.
By “we”, of course, I mean me and my specialist medical team at a university hospital. With the continuing support of my realistic, yet perpetually kind, family physician.
So a year ago I planned something special, to mark the third anniversary of my diagnosis – which was yesterday. Because I’d thought that by now I’d also be celebrating the end of my CRPS struggle.
That I’d finally be able to fully focus again on the future; on my career, my plans to do a doctoral degree (a PhD), my hobbies, my outdoor sports, my friends, my family. And that I’d be well enough to do more effective patient advocacy.
Unfortunately that’s not what happened. My disease didn’t resolve; it got worse. Its grip on my life has tightened, and seems to be costing me my career. And I haven’t felt well enough to even continue with some of the patient advocacy activities that I’d been doing just last year.
Despite that, I stuck with my plan for the third anniversary of my diagnosis. It was something positive on which I could focus, of which to be proud. What was my big plan? A $1,000 donation, to the charitable foundation of the hospital at which I’ve been receiving treatment for CRPS.
This hospital’s pain management unit (PMU) provides not only medical care, but also physiotherapy assessments, psychological counselling, and other essential services to patients living with chronic pain. So the donation would be targeted to the PMU, through the hospital foundation.
To be clear, that’s not pocket change to me and my husband! We usually stay home for our vacations, avoid buying expensive items, and drive older-model cars. And because of CRPS, I’ve spent more than $25,000 on physiotherapy over the past 3 years; using the money we had saved to renovate our 1990 kitchen. Beige melamine counter-tops; need I say more?!
So how was I going to come up with $1,000? My plan was to pay cash for most purchases, for a full year, and then save all the pocket change. In Canada we have $1 and $2 coins, so we end up with a LOT of pocket change when we pay cash for anything!
And then I’d donate all that pocket change to the hospital foundation. With a cheque though, not a bucket full of coins ‘-) My husband agreed with my plan, knowing how important charitable giving is to me. He added his own pocket change, even though he rarely carries cash.
Each time I’d gather $50 in coins, I’d head to the bank to get a $50 bill that I’d hide in a safe place. That may seem silly, but it was very encouraging to see those $50 bills adding up.
Today I brought my cheque to the hospital foundation’s office. It was a fantastic feeling, and I’m truly happy that I decided to go ahead with my planned donation. After all, it’s still the third anniversary of my diagnosis with CRPS.
If you’re wondering what’s up with the little bunny, you can read his story here; his name is Max, and he helps me raise awareness of CRPS ‘-) Max even guarded the donation cheque, on the drive to the hospital today, before I met a friend for lunch…
The fact that I’m not where I’d hoped to be, in my patient journey, is a really good example of the unpredictability of this disease. I’m sure the hospital will put my donation to good use, to help other patients who live with chronic pain conditions.