Last year around this time, I was discharged from Halifax Pain Clinic as a patient. We spent a year trying "the treatment for CRPS" and it didn't work. My spine has too much damage for an SCS, the doctor didn't know what else to do but discharge me.
To most people, that sounds fantastic. To my family doctor, it seems it must not be CRPS if we tried the treatment for it for a year and it didn't work. Right? -with this thought, if it wasn't CRPS after a year of treatment...they were just dropping me as a patient and not finding an alternative answer? Strike one for medical system. And for the record, they were wrong.
At the time though, I believed them that we tried the treatments & there was no point in trying the same thing over & over again, expecting different results. Einstein says it was insanity, I wonder what Tesla says?
So, this time last year, I was "beyond repair". I had no answers, no medication and no doctor. I had a 6-7 Stellate ganglion blocks during my first year diagnosed, I had 36 beautiful hours pain free from one of them. It was amazing. I also had multiple nerve blocks each time, almost a year of physiotherapy and occupational therapy. Plus, I tried many medications. But I couldn't get better and no-one could explain why. My family and husband didn't know what to do. My friends didn't exist and so I did not know what to do at that point.
My body was crumbling, my dominant arm was of no use unless I smoked a massive amount of marijuana. They all thought I was just a stoner on a mission for medicinal I suppose. But nothing could explain the swelling, discoloration, temperature changes and uselessness of my dominant arm. It was hurting the rest of me physically, but most of all, my heart was hurting.
I started to do some research about CRPS and I found PARC (Promoting Awareness of RSD/CRPS in Canada).
Helen Small, the Executive Director of PARC, changed my life. She gave me hope and the Sparkle in my name. She has become very close to my heart over this past year.
She advised me of MANY treatment options and so much information. She gave me fuel for my fire to help give hope to others. Stellate ganglions work on the sympathetic nervous system and some doctors without current training, seem to believe that is the only nervous system affected. Which is just foolish. CRPS affects almost everything in a patients body.
Many patients in Canada (66%) end up having to go through 3-4 doctors with the same symptoms before being properly diagnosed, let alone treated. This is absurd and I am sure it is similar internationally.
Me and Helen spoke on the phone one night last year for 3 hours almost. She helped me find Dr Harry Pollett in Cape Breton, a CRPS specialist who was about to retire. I was so lucky to see him. I received Photon Therapy and more nerve blocks than I'd like to admit! (Why does a needle have to go from your back through your ribs? It's torture, but we tried it).
She is the one who gave me a reason for the first Walk to Conquer CRPS last year. What a passion project that became. I contacted radio stations, local celebrities, businesses, old friends and family. I tried to move mountains to make it a successful event.
We were (and still are) raising money for medical research that is happening in Montreal. They will be testing a low dose injectable compound called GBM-5 for patients with CRPS. They are hoping this will become a successful treatment option to increase the quality of life for CRPS patients.
With only a little bit of event organizing experience last year, we still managed to raise $1,000! Which is fantastic!
This year though.
This year I want it to be loud. I want it to be known to everyone that CRPS, RSD and Causalgia are ALL Complex Regional Pain Syndrome and they have the nickname of 'suicide disease'. The continuous and life consuming pain is rated 42 of 50 on the McGill Pain Index, higher than child birth, amputation of digit, the terrible C and anything else compared to it.
There is no cure.
So most patients, like myself last year around this time, feel there is no hope. This is an awful feeling. Especially after losing most friends, family members and other relationships because of your unique lifestyle you have to maintain because of CRPS. Especially after pleading and begging the medical system to just look at the information pamphlet you are bringing them. Or take a glance at the pictures of your affected limb on it's worse days. Or even properly examine us. Just hear our stories and help. Someone!
I have been told by emergency staff and my family doctor, that it was impossible to give me a proper examination because of the allodynia. When it was still new, I would cry if it was touched, bent or pulled. That to me, says I'm in a lot of pain from something. To them, it said I was too emotional to go through with the examination. (Literally, in my medical record. I was too emotional from the allodynia, she is unable to examine me and unable to answer questions.)
Unable to help.
So what is a patient to do?
This patient decided to stand up and make a difference and I'm here for you all. Any type of pain is pain, CRPS kinda caps it as the Queen of Pain (or King, no haters) on the McGill Pain Index. So I am going to turn that symbol into wings in my mind and help anyone beside or below that I can.
There is hope and I will make it shine somehow.
I have been working on stuff for this years walk and am hoping we exceed last years totals! If anyone is interested in joining me, donating gifts for prizes or funds for the cause, email conquercrps@gmail.com. I will have a link available soon for direct online donations too, I'm just waiting on dates to be finalized.
Awareness needs to be raised because we need answers. We need to stick together and get the message out. WE NEED A CURE FOR CRPS.
Luckily, I have a really loud voice. And I have met some incredible vocal talents lately on the same mission. #CRPS1Name and it is being screamed by many!
Much love, strength and positive thoughts to you all. Better days are ahead, in the meantime we gotta make the best of today ❤️☮️😀
Day 45/365
Entry 22/183
Positive thoughts,
-Kristen Sparkle
@ConquerCRPS and @HippieRaysWays on Instagram