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Posted by on Mar 3, 2017 in Rare disease | 0 comments

Top 10 ‘big things’ I miss (17.03.2017)

Top 10 ‘big things’ I miss (17.03.2017)

It’s hard to believe that it’s been a year – today – since this roller-coaster rare disease journey began. Even harder to believe is the fact that this whole saga was triggered by a broken arm (a Colles’ fracture, or snapped radius).

After a full year I still have limited use of my right hand and wrist, and I’m right-handed. The affected area is very painful, and also extremely sensitive to the touch; fabric rubbing against the skin can cause a pain ‘flare’ that feels as though a blowtorch is being held to my hand and arm. For hours. And hours.

To mark the 6-month point in this rare disease journey, last September I wrote a list of the Top 10 “little things” I miss most about not being able to really use my hand and wrist. Since then I’ve gained a bit more use of my hand, but still can’t do many regular day-to-day activities (like handwriting).

So to mark the passage of a full year, I’m writing another “Top 10” list; this time of the ‘big things’ that I miss because of this rare disease. I don’t usually like to think about the things I can’t do – I prefer to focus on the positive, on what I can do – but am making an exception for this non-celebratory anniversary:

10. Wearing jewelry on my right hand and wrist; I haven’t been able to wear any of my rings or bracelets on that hand for over a year; most of them were gifts, and have sentimental value

9. Cooking home-made food by myself, without help; I can’t chop fruit or vegetables, grate/shred food, use a can-opener, or do anything in the kitchen that requires both hands

8. Craft activities; creating hand-made birthday cards, painting, sewing, painting, scrapbooking… and even handwriting!

7. Baking cakes and cupcakes with fancy icing, and making decorative cookies

6. Lifting weights, and doing other weight training exercises (like tricep dips and wall presses); I’ve been doing low-level – for fun, not competition! – weight training for over 25 years now. I get up at 0500 to train at a gym several times a week, before work; except during cycling season, when I’m out on my bike instead. Weight training’s like meditation for me; it relaxes me, and helps me deal with adversity and stress. It’s frustrating that now, dealing with disease adversity, I can barely do any weight training

view from the summit of a mountain

Photo: Sandra Woods

5. Doing the outdoor activities and sports that I love – properly – with both hands (I put cycling in a different category, as it’s something I’d normally do every day except in winter); canoeing; cross-country skiing, with both ski poles; mountain hiking and snowshoeing, with two trekking poles; skating, because I haven’t found a way to lace up my figure skates with only one hand.

The photo above is at the summit of my favorite mountain hike, near Lake Placid in northern New York State.

4. Cycling. I’m able to do some limited riding, but really miss… a) riding a road (racing-style) bike; b) being able to brake properly on my commuter bike, which would allow me to go back to bike-commuting to work; c) doing proper descents (i.e. riding down hills quickly), which I can’t do because I can’t brake properly; and d) going for rides longer than 20 km; any longer than that and my entire hand swells up and feels like it’s being blowtorched – for hours

This photo shows the best part of my 20 km/12 mile – 40 km/24 mile round-trip – bike-commuting route, back when I could still ride properly!

View of a forest path

Photo: Sandra Woods

3. Being able to sleep, without being woken up by pain flares several times a night; usually for hours, often for the entire night

2. Not being almost constantly in severe pain; from both neuropathic (nerve) pain and joint pain

1. Not having to deal with the almost-constant fear that this disease will start to spread again, and that my medical team will once again ask me to consider amputation of my arm – from about halfway between the wrist and the elbow – to prevent the CRPS from spreading any further up my arm…

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