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Posted by on Dec 21, 2018 in CRPS / RSD | 0 comments

Not where I wanted to be (21.12.2018)

Not where I wanted to be (21.12.2018)

Have you ever had a bad dream, where you found yourself – somehow – in a place or situation in which you’d never wanted to be?

That’s what I’m waking up from, only it’s not a dream. As of midnight, an hour ago now, I’m on medical leave. On “short-term disability”. Adrift.

It’s only for 2 months, but I feel… I can’t even describe it. It’s 01:00 and I can’t get back to sleep, I’m too upset. And if you know me at all, you’ll know that I’m never at a loss for words.

Why am I so upset about being off work for a couple of months? I’m sure people will tell me things like: “Oh, you’re so lucky…

  1. not to have to get up at 05:00 anymore!”
  2. you’ll be able to live in sweats for a couple of months!”
  3. to not have to deal with rush hour traffic!”
  4. you can binge-watch TV shows!”
  5. you’ll be able to do whatever you want!”

But the reality is that I like going to work. My team is a fantastic group, each of them a kind & caring person. And I’ve said for years that I have the best job ever; I get to give money away, to hospitals, medical schools, and organizations that help patients.

For a bioethics professional like me, it’s a fantastic feeling to have a hand in large-scale programs that will make long-term differences in patients’ lives. In the lives of people like me, who never expected to need so much medical treatment & healthcare while still ‘relatively’ young.

And as for all those comments I’m sure to hear, I’ll probably want to smack anyone who says them. So my replies will be:

  1. I’ve been waking up at 05:00 for more than 30 years, even on vacation – that won’t change.
  2. Wearing sweats just isn’t my style! I like to dress up; I don’t even wear jeans most of the time – even though we can wear them every day at work!
  3. I didn’t have to deal with rush hour traffic most of the time; I’d either go to the gym before work at 0530 and avoid the worst of it or I’d car-pool with my husband and let him deal with it!
  4. I don’t like watching TV for more than an hour, especially now; I used to do crafts while watching TV, and it makes me sad that I can’t do that anymore because of this nasty disease.
  5. What I want? What I want is for this disease to just go away, for all the clinical signs & symptoms to disappear. Or even just a few; the excruciating pain (7 different kinds), extreme (autoimmune) fatigue, joint damage, tremors, and weakness.

I dream of not being in constant pain, so bad that throwing up from pain is something I do literally every day. At the office.

ice covering a roadway

Photo & image: Sandra Woods

So I’ve spent the past few months fighting this, ever since the idea was brought up at my specialist university-hospital clinic. I didn’t want to leave my job. I’m good at it, and I’m passionate about it.

So last night, talking with my family physician, I felt that I somehow hadn’t fought hard enough; that maybe I could have done more. But what?

My first thought was that I should have downplayed my symptoms – new & old. But I know, from my own bioethics background, that it’s always a bad idea not to he fully honest with your doctor.

Then I thought back to last May, when I was at the Canadian Pain Society conference. I attended their Annual Scientific Meeting as a “Patient Partner”, and was able to talk with pain specialists from across the country.

Specialists across a range of fields, all dealing with chronic pain conditions; anaesthesia, chiropractic, massage therapy, neurology, nursing, occupational therapy, psychology, physiology, physical therapy, rheumatology, and others.

Some of them work, or do research, with patients who have the same rare disease as me: Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (RSD).

Whenever I’d seek out one of these specialists, or they’d come to find me, they’d always be surprised that I was “still working”. ¬†So I just thought that I must have a milder case of CRPS than other patients.

But when I asked my own specialists about that, after the conference, they said my case wasn’t mild. That ‘mild’ cases didn’t require the series of stellate ganglion (nerve) blocks that I’d had in the day-surgery operating room (OR).

And that a ‘mild’ case of CRPS wouldn’t have had the Bier/IV blocks in the OR, the additional 10 or so ultrasound-guided nerve blocks I’ve had. And all the medications they’ve tried.

When I asked my family doctor last night, whether there was anything else I could’ve done, his answer made me cry:

“The only reason you’re still working, it’s because you have such a strong… [pause] personality. Will.

I know you. Anyone else would have stopped working months ago. Maybe as soon as they were diagnosed.

You’ve been fighting this disease so long, you might have made it worse, long-term. You can’t keep going to work, and vomiting from pain. Hiding it.

All of that will cause more health problems. You need to listen to us now, listen to your doctors. Stop fighting so hard, trying to pretend you’re ok.”

So I listened. And am now… adrift.

I’ll write later about the instructions he gave me, what my family doctor wants me to do on workdays. My individualized treatment plan, for each workday of the next 2 months…

It’s 01:30, and the alarm clock’s going off at 05:30, for my husband… and Day 1 of my doctor’s plan, for my medical leave. So I’d better try to get some sleep.

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