November is CRPS/RSD Awareness Month

CRPS

November is CRPS/RSD awareness month. Personally I guess I have never had to (thank goodness) pause to think what an awareness month has really meant for me in the past. I have not really been affected too much in the way of friends and families to fight for awareness for. A friend of mine passed from cancer and I have held a few “Biggest Morning Teas” in her honour and have always tossed coins that way. I always always scrounge for spare change for the Salvos, or any other charity if someone knocks. I have always in some way dedicated my time to helping at Food banks or knitting for the needy and I can’t really remember a time when I was an adult that I wasn’t volunteering for something or other.

Here in Australia there is no charity that collects for research for CRPS/RSD. I tell people that it is a somewhat rare disease but when you read facts such as:

RSD/CRPS is NOT a rare disorder, and may affect millions of people. It is hard to pinpoint the number of people who have RSD/CRPS, though some estimates put the number of people afflicted with this syndrome at 6-10 million and other estimates claim between 5% and 10% of the population.
That makes the RSD/CRPS population of the United States greater than that of the Combined United States Military, 2,221,502.

https://www.facebook.com/CRPSDOM

All these people and still you can feel so desperately alone. In Brisbane I feel personally that the medical profession in the public sector seems to be so backward. All the jokes that other states tell about Queensland being backward, well the lack of knowledge by one particular “so called” professional that treats more CRPS patients than any of the other doctors at the Royal Brisbane really should just read just 1 article on this disease. How can we get ANY treatment as a public patient in Brisbane? The answer is seeming to be – you don’t. After 2 years of waiting and begging for treatment I am back to square 1, trying to find a new clinic to take me on about an hour from home. Luckily though it comes with good references (Thank you Col) so it is again a waiting game.

At present I am not up for waiting games. It is Day 9 of a horrible flare that causes me to not be able to shower myself or change my clothes, basic day to day everyday kind of things. On Day 9 it also means that I have become completely tolerant to anything that may have just taken the edge away from a 19 out of 10 pain…all day long….so I now greet each day with sleep and meditation…all day long. My sense of humour fast evading me. At this point I ponder….a sympathetic nerve block….a dose of ketamine…dreams that once were about trips to America and other places. I wonder how long I will have to sit here stuck in this never ending circle before we can try something new.

If there are so many people with this disease why aren’t their more trained specialists in pain relief as there is no cure presently for CRPS. How does 1 raise awareness…is it the same as the riddle “How do you eat an elephant…one bite at a time.” How do you raise awareness for CRPS/RSD…one person at a time. If there are so many people in this excruciating pain why are they letting us suffer?  Below is the McGill Pain Index showing a scale with this disease being the highest chronic pain you can feel (it is also represented as Causalgia on the scale)
McGill Pain Index

This disease ruins lives in so many ways. I couldn’t begin to convey how things have changed for Master Shazz and me. Master Shazz became my carer at 13. This disease has you clinging to any tiny weeny happiness that once you probably didn’t even see. This disease has me clinging to the fact that there are still so many people in this world worse off than me.

So on my “wee little blog” we will eat the elephant 1 reader at a time and remember the mantra on Day 9 “This too shall pass”

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1 Comment (+add yours?)

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