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Posted by on Jun 19, 2017 in CRPS / RSD | 0 comments

Team Captain update (19.06.2017)

Team Captain update (19.06.2017)

Earlier this month, I mentioned that I was a Team Captain for a 4-week workplace fitness challenge. This is despite being a contract employee, and also dealing with a chronic, (mostly) invisible, and rare disease (see Team captain, me?).

Photo of a 2017 fitness challenge t-shirt

Photo: Sandra Woods

I’d been thinking of posting something about this rare disease on the challenge’s social media platform, to raise awareness of CRPS. Well, I did it!

To make it (hopefully!) more interesting I decided to write a ‘day in the life’ post; about a medical procedure I had just undergone. Here it is!

Yesterday I left the office to live my “other life” for a few hours, as a patient with a (relatively recent) rare and invisible disease. It’s called Complex Regional Pain Syndrome (CRPS), or sometimes by its old name Reflex Sympathetic Dystrophy (RSD).

It’s a neuro-inflammatory disease that usually affects a limb, but can spread and/or ‘jump’ from limb to limb. In my case, it affects my right arm and hand – and of course, I’m right-handed. CRPS also involves the joints, and causes severe pain; both joint pain and neuropathic pain.

In my case, my wrist and each joint of every finger is affected. For some reason, my thumb wasn’t affected – for which I’m very thankful; for most activities, I can’t use any of the fingers of that hand.

There’s also severe fatigue, from the neuro-inflammatory component, and a whole list of other signs and symptoms associated with this disease. There are no approved treatments for this disease, so everything my medical teams are trying is a bit like guesswork.

So I thought I’d share with you what it’s like to be an outpatient sometimes. This is what happened after I left the office at 1330 yesterday:

– A 45-minute drive from the office to the hospital, in traffic. At least I wasn’t driving! My husband took time off work to come with me, as I have to be accompanied (can’t be alone) after this type of treatment. I’ve had similar treatments about 15 times so far, and my body reacts differently to each one; sometimes I feel fine, other times I can barely stand upright – let alone walk – for hours afterwards.

– We found a space in the hospital parking lot, but then had to go inside and wait in line for 15 minutes at the hospital’s parking & security office, to renew my ‘reduced-price for patients’ parking pass ($100 for 7 visits)

– A 1-hour wait-walk; I was told when I checked in at 1500 that my procedure was delayed by an hour, but I was too nervous to just sit in the waiting room for that long. My husband wanted a coffee, so we decided to walk 20 minutes to a coffee shop – and then 20 minutes back – rather than try the hospital coffee. It was a really nice day…

– I’d been fasting since the previous evening, because I was going to have a treatment that often causes vomiting, and it hadn’t occurred to me that the nice 20-minute walk down the mountain (Mount Royal) from the hospital would also mean a walk back up the mountain! I was able to do some stair-climbing for this fitness challenge (while still fasting!); 80 steps down, and then 80 steps back up…

– A 15-minute wait at the hospital, waiting for one of the physicians who’d be assisting with my procedure

– A 30-minute ultrasound-guided procedure; an injection into the stellate ganglion (the cluster of nerves located kind of between the heart and the shoulder) with 3 specialists. It went well but, as usual, I felt nauseated & dizzy afterwards (those fun side effects can last up to 24 hours).

– A 60-minute post-op observation period; the medical team there knows me so well by now that they let me get up off the gurney in the post-op area, to go sit with my husband in a reserved area of the waiting room, for the last 30 minutes.

– A 90-minute drive, in very heavy traffic, to a rehabilitation & wellness clinic (closer to my home) for a very specific & prescheduled post-procedure physiotherapy treatment. My husband had to help me walk the few feet from the car to the clinic.

– A 1-hour fairly painful physiotherapy treatment.

– We got home at about 2000. I hadn’t eaten since the previous evening, but still felt too dizzy and nauseated to eat…

Moral of the story = Patient life can be exhausting (and painful)!

And yesterday was a good day; 2 treatments in 2 different locations, with only 1 real delay.

On the positive side, my husband’s coffee was free! The Starbucks we went to was unexpectedly closing for the day, because their air conditioning unit had failed and the temperature in the store was above what’s permitted by our workplace health and safety regulations. The employees had set up a small table just outside their door, to give away all of their Cold Brew and other iced coffees before they closed ‘-)

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