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Posted by on May 27, 2018 in CRPS / RSD | 0 comments

Max’s challenge (27.05.2018)

Max’s challenge (27.05.2018)

Today, May 27, marks 2 years since my diagnosis with CRPS. To say it’s been a challenging couple of years would be an understatement. For more on how hard it was to even get a diagnosis, which took 3 months, read Code breaking; a diagnosis.

But today I want to tell you about some of the positive things that have happened since my diagnosis. That I’ve met, and been treated by, some absolutely fantastic specialist doctors & others – at several different hospitals & clinics. And that I’ve come up with a small way to give back, to one of these hospitals.

X-rays

Photo: Sandra Woods

At the very start of this saga was the emergency physician at my local community hospital. Dr. G. could tell that I was interested in my fracture, so she took the time to show me the x-rays and to explain why she considered it to a classic Colles’ fracture. After she’d reset the bone, and put on the cast – herself – she sent me back to the radiology department for another set of x-rays; to be sure that the 2 ends of the bone were in the right position.

And then she again took an extra few minutes to show me – and my husband – the 2 sets of x-rays, side-by-side. So that we could see how perfectly the ends of the bone were aligned, and that “it should heal just fine”.

Next was the neuro-anesthesiologist who confirmed my diagnosis, at the same local community hospital; Dr. H made it a personal challenge to stop my disease from spreading any further. He did that by ‘squeezing me in’ for a series of 6 day-surgery procedures, all within a period of about 2 weeks. (I’m not mentioning the 1 physician and nurse who were unhelpful, or downright negligent in this post, because I want to focus here on whose who’ve made – & are making – a positives contribution to my care!)

Once the CRPS had stopped spreading, Dr. H arranged to do another 2 intensive day-surgery procedures. These medical interventions both involved hospital physiotherapists; they would try to improve the range of motion in my hand & wrist – while it was completely ‘numb’ from an anaesthetic used with a hydraulic tourniquet.

It was about this time that I started working with an outstanding physiotherapist, Cherif Rafla (name printed with permission), at a physiotherapy and wellness clinic. He’d been a physician in another country, but had then requalified as a licensed physical therapist (PT) so that he could more easily work in other countries (including England and Italy).

I’d been offered (free) in-hospital physiotherapy, but it was only available during business hours and I’d been told I’d often have to wait – even with an appointment. I work full-time, so that wasn’t really an option for me; to miss 3 half-days of work a week, on top of all the time I was already missing for day-surgeries and follow-up appointments with doctors. The wellness clinic offered evening appointments, but I had to pay for these. I’d never expected that I’d still be needing physiotherapy, so long after the diagnosis!

a hand and wrist, brace with elastic segments to pull on each of the 4 fingers

Photo: Sandra Woods

It was Cherif who suggested that I use a dynamic hand brace to try to prevent some of the long-term effects of CRPS, and also to improve the range of motion of each finger. The community hospital finally ended up prescribing this brace for me; it had to be custom-made by an orthopedics company, because it was too specialized for the hospital to make.

Cherif also found a simple – but unexpected – way to lower the amount of joint pain I have after each manipulation and mobilization (M&M) physiotherapy session. He asked the health clinic buy a small hot paraffin bath, just big enough to dip a hand into. After each – very painful session – my finger & wrist joints are soothed a bit, by a 15-minute hot paraffin treatment.

Even though I still have physiotherapy sessions twice a week, down from 3 times a week for over a year, there’s another healthcare centre that’s even more important to me now, as someone living with a chronic pain disease.

That’s the Alan Edwards Pain Management Unit (AEPMU) and its associated Alan Edwards Centre for Research on Pain (AECRP). Both of these centres are at the Montréal General Hospital (MGH), a part of the McGill University Health Centres (MUHC). For more information about the MUHC, read my post about the MUHC here.

I’ve had 2 specialist physicians at the AEPMU. The first was Dr. Díez Tafur (name published with permission), who was at the AEPMU for a 1-year fellowship from another city. A fellowship lets a doctor, who already has all of their qualifications, visit a specialist hospital or university to learn new skills. And it lets them see how treatments are being offered to patients in other parts of the country, or the world. Not only do the Fellows bring this knowledge back to their home cities or countries, they also treat patients during their fellowships.

Dr. Díez Tafur is a very kind physician, and was far from home. So he let me talk with him about his family, who’d stayed at their home for the year – to make a personal connection. I’ve always found it easier, more comforting, to be able to just chat with my doctors. Some of them are comfortable with that, and some aren’t; just like everyone else!

I was sad when Dr. Díez Tafur’s fellowship at the AEPMU ended, but very happy for him – to be returning to his family! And when I found out that Dr. S would be taking over my care, I was very happy. Dr. S is another very kind doctor, and is also very calm and reassuring.

In fact, everyone I’ve dealt with at the AEPMU, from the receptionist and other administrative staff to the nurses, doctors, and other licensed professionals in healthcare, have been not only exceedingly competent – but also kind. If you’ve read some of my earlier posts, on the bioethics portion of this blog, you’ll know that I value kindness above almost all else in healthcare; see kindness is underrated (from 2012).

So what I’ve decided to do, on the 2-year anniversary since my diagnosis with CRPS, is to take my awareness-raising activities up a notch. I’m going to try to raise $1,000 by this time next year, to donate to the AEPMU/AECRP, by collecting only pocket change! Here in Canada we have $1 and $2 coins, and many people don’t like to carry them as they can make your pocket or wallet quite heavy.

A 3" high plush rabbit with long ears, holding a carrot

Photo: Sandra Woods

All my pocket change will go to this, and anytime one of my friends or family asks about my CRPS, I’ll ask them they’d like to contribute their pocket change too – to maximum of $5. And my little cycling buddy Max, a 3″-high plush bunny, is going to help do the same with strangers.

Max is often how I bring up the topic of CRPS at cycling rest stops; I started taking him with me on bike rides, as a joke, when one doctor said I might want to ride with someone else  ‘-) And ever since our first ride ‘together’ folks have been asking about Max, when I pull him out of the pocket of my cycling jersey to take his picture.

How’s Max going to help me raise pocket change donations for the AEPMU/AECRP? He’ll be willing to pose in photos with other folks, or to tag them on Instagram – for some pocket change (always to a Max-imum of $5!)… Wish us luck over the next 12 months!

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