I'm going to take a trip down memory lane to explain how royally forked this situation is. I will keep it short and sweet the best I can, but the entire thing is frustrating for me. It's easy to say I'm up shits creek without a paddle, but I don't want to. I want to keep trying to make the situation better, because if I don't.. who will?
In Feb 2017, I was walking to work and I slipped on hard snow. I tried to catch myself and hurt my arm. The medical person at work sent me to the hospital for xrays and I spent 6 hours in a johnny gown waiting to be seen. By the time the nurse saw me, I was in a lot of pain and crying from discomfort. So she asked me to come back the next day so I could be examined properly. -thanks lady, turned out I had a fracture in my forearm.
In March, when I was having my cast removed, I knew something was wrong. I have never broken a bone in my body, but I knew something did not heal right. I was miserable. My family doctor suspected something called Complex Regional Pain Syndrome in my right arm and she sent me to a pain clinic.
In June 2017, I had my first stellate ganglion block and some nerve blocks. I tried medications, physiotherapy, occupational therapy and had multiple stellate blocks and other blocks throughout 2017-2018.
June 2018, My first pain specialist realizes there is nothing more he can do. I wasn't getting benefits from the blocks, medications, physio or stellate's. I wasn't able to get an SCS put in because my spine has it's own problems. He told me two inspirational stories and told me that is what I need to do: Inspire others and start blogging. He wished me luck as a patient and I haven't seen him since. (I am going to write him a letter after this 365 day challenge is over to thank him for inspiring this. Thank you to everyone who has reached out over the past year to share their stories with me. We are not alone and we are stronger together).
Shortly after, I started doing my own research. I wasn't about to get stuck like this for the rest of my life and just hope to inspire someone from my miserable situation. How was I supposed to get back to full time hours at work? How was I supposed to do anything with a gimp, fire filled, dominant arm? I found PARC (www.rsdcanada.org). Helen Small is the Executive Director and she is the one who put the 'Sparkle' in my name :) She educated me and ignited a spark in me. I needed to inspire and make a change if I wanted to see one happen in the CRPS community. For myself and for others.
In August 2018, I moved mountains to get to Dr Harry Pollett in North Sydney, a CRPS specialist who was about to retire. I stayed for a week of treatments before having to return to Halifax without a pain specialist. Dr Pollett treated me with a series of blocks and Photon Therapy, a laser therapy machine he purchased himself for the hospitals patients. I cannot emphasize enough, this Doctor CARED about his patients, he put off retirement twice because of them. Knowing CRPS is so confusing to most doctors. He wrote in my file for a new doctor to start infusions for me, as they seem to be the most successful treatment and should be the next step for me.
Also in August, I held the 1st Walk to Conquer CRPS here in Halifax. We raised $1,000 to go towards medical research happening in Canada for a new CRPS treatment.
There was a new clinic opening in Halifax, Dr Polletts wife was opening it. There was hope for me to start infusions and be seen in a clinic that I felt comfortable in, and close to home.
My family doctor wasn't comfortable with sending me there until she heard more about the place.. She wanted me to go see her friend in Dartmouth for infusions first.
In early March 2019, I met my 3rd pain specialist. The first pain specialist that questioned me and my journey, like my family doctor does. She sent me for an EKG for infusions to start as requested in my file. By this time, the CRPS is dominating my right leg too.
June 2019 I meet with her nurse for my first appointment and she says were doing 6 weeks of BioPhoton Therapy first. She asked if I wanted to treat my arm or leg because we couldn't do both. I chose leg in hopes that I could walk again normally.
In July, I could barely move my right leg and after 5 weeks of telling the doctor that I think we should stop, she agreed. She sent me to that clinic I was trying to get into for a year... I was going for my infusions..
Why didn't I get them in her infusion room that I walked past every day for my BioPhoton even after my EKG? I still don't know and it is upsetting.
In August 2019, I finally got into that clinic for infusions. I met an amazing nurse and doctor and was being scheduled for 6 weeks of lidocaine infusions. Only took me a year to get there, but I was there finally.
I had one infusion and then the nurse went on maternity leave early.
I also organized the 2nd Walk to Conquer CRPS that month and we raised $1,900 this year. Pretty amazing for someone who has NO LUCK for her own medical journey.
Monday, (Now December 2019) I had my appointment with the 5th pain specialist..She was incredibly sweet.
She says that my CRPS is taking over though. My left leg sensitivity is the same as right, my right is bowing out to the side. My left arm is having it's own issues but we want to eliminate stress to reduce CRPS spread. The blocks are more for triggered pain and I don't have the best history with them. She didn't want to cause me anymore pain with something that wasn't going to work. I need to start walking with a cane and continue to wait for a new nurse to come in for lidocaine infusions.
So, it seems while I wait, I raise hope and awareness for CRPS in one way or another. Through the Walk to Conquer CRPS, this blog, Instagram or CRPS coaching via email. This has been one hell of a journey for me so far. I cannot imagine going through this without my Sparkle though. I need to find hope and options for myself and others, now more than ever.
I'm going to keep trying to Conquer CRPS, because I won't let it conquer me.
#NottodayCRPSnottoday (Whoever came up with this, I heart you.)
On that Note, Jan 16 marks 75 days left of my blog challenge and I want other Spoonies to join me. 3 short entries a week for 75 days. Just to shed a little light onto the lives of Spoonies and what we go through. Raising Awareness together <3
I am getting ready to hobble off to work in the snow again...my financial assistance and medical marijuana situations are also as Complex as the pain specialist situations and the condition itself. I have to try to work 2.5 hours a day in a call center with CRPS unmedicated if I want a penny to my name for bills, food and oh yea... Christmas!
With all of that on my plate, I'm still going to try to make today a good day with positive thinking and being kind to my mind. I highly recommend trying it :)
Positive thoughts,
-Kristen Sparkle
Day 248/365
Entry 114/183
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