I started my blog a few years ago and tried to write as often as possible, but it wasn't enough. I needed to challenge myself and raise more awareness in an attempt to let the world know what CRPS is and how it can affect a persons life in almost every way imaginable. I try to keep personal stuff out, as it is personal, but I do allow some raw emotions to flow through here when necessary.
Now I want to just take a minute to go over the past in as brief detail as possible, because I think even they are enough of a rig-a-ma-role to make a person goes crazy. Not everyone has been with me since day 1 of this challenge, I appreciate each and every one of you for your support through this journey though. I look forward to the next 6 months possibly being the best 6 months of my life.
2017- I was diagnosed with CRPS in my right arm after I tried to catch myself while falling in snow. I had 5 or 6 Stellate Ganglion blocks, multiple nerve blocks, many hours at Physiotherapy and Occupational Therapy and many medications. I had 36 hours pain free from one of the Stellate Ganglion's, but otherwise the pain continued and was getting worse.
2018- Pain Specialist wished me luck in April after all of those blocks and treatments not working and my spine being too damaged for an SCS. I was without treatment and a pain specialist until August. I found PARC (Promoting Awareness of RSD/CRPS in Canada) and Helen Small, the Executive Director, helped me find Dr. Harry Pollett in Cape Breton. He was a CRPS specialist and the only one on the East Coast that I know of. I traveled to Cape Breton for a week of Photon therapy (laser) and multiple blocks and injections. He retired the next month and his wife opened a clinic in Halifax. I was unable to get in at the time because my family doctor was not comfortable sending me to a new clinic and wanted me to see her friend first. I organized the 1st Annual Walk to Conquer CRPS to raise funds for a medical team in Montreal that are testing a new treatment for CRPS. We raised $1,000 last year.
2019- In March, the CRPS traveled to my right leg to match my right arm. In April, when I started the 365 challenge, I got into Dr Hernandez's office. The plan was for Lidocaine infusions and BioPhoton Therapy (laser). She sent me for an EKG for the infusions before treatment could start and Dr Pollett had it in my file that he wanted me to start Injectable Compounds in August 2018. That was the plan. Instead, I had to choose between treating my arm or leg to receive 8 weeks of laser therapy. I chose my leg because walking was becoming increasingly difficult. They treated from my knee to my foot on one side mostly for 8 or 9 sessions (my blog entries will let me know how many). I was in intense pain for 24-48 hours afterwards and became worse. I pleaded for infusions and medicinal marijuana (many years on this one) after complaining for a month straight about increased pain. She sent me to the clinic that I wanted to get into in August 2018 after seeing Dr Pollett. I was in on August 10, 2019 for an evaluation from Dr D, and through the miracle of scheduling, was able to get an appointment that day to start my weekly infusions because my CRPS is quite intense and traveling. I had my infusion and the nurse went on maternity leave early. I have been without treatment and a pain specialist since, again. I did organize the 2nd Annual Walk to Conquer CRPS with some amazing help from friends. In August, we raised $1,900 to go towards medical research for CRPS treatment. Totalling $2,900 in 2 years :) In late August or early September (blog will tell), my left leg started acting up with CRPS symptoms. I have problems wearing socks, shoes and pants that aren't styled to suit MC Hammer. I can barely walk unless highly medicated on self prescribed Marijuana.
I'm falling apart.
But I have 24 days left until the passion project that me and my Soul Sister have been working on is going to be released for the world to enjoy <3 As the days come closer, I will release more information. This project will need support, networking and love. It is near and dear to our hearts and has been for years. Finally, together we can make something bloom and I can't wait to share it with the world.
I continue to try to work part time at my call center job that I've been at for over 7 years now. I continue to work on my 365 day challenge, Spoonie Edition, so I can inspire others to try to make the best of their situations. Even if reality fricking sucks. We can choose to try. Try to make the best, try to be kind and try to smile.
Before I end this entry, I just want to remind everyone that CRPS is rated 42 of 50 on the McGill Pain Index. It's intense pain is rated higher than childbirth, amputation of digit, fibromyalgia, non terminal cancer and anything else that you can think of. ONE of it's symptoms is Allodynia, a sense of extreme pain from non painful situations. Like my cats tail brushing up against my leg as she circles my feet at treat time, feels like blades of fire slicing through my leg. I'm not being dramatic, anyone with CRPS and a symptom of Allodynia can confirm. I have to convince myself that the pain isn't real 24/7, while communicating with my loved ones or coworkers. While cleaning or cooking or working or taking a shower. Whatever it is that I'm doing, there's a part of my mind continuously saying "It's ok, that doesn't hurt. Just keep swimming." (Not literally swimming, I wish.)
Also, there's no cure for CRPS. It's nicknamed the 'Suicide Disease' for these reasons. That's why I choose to get up everyday and do my best to raise awareness, raise hope and inspiration for other warriors and to raise an opportunity to find a cure for this damned disease. We are stronger together and for others, myself and my family, I will continue to fight <3
Stay strong everyone and stay kind to your mind. It's all connected and only you can pull yourself through this <3 I got you though, just let me know if you need me <3 [email protected] <3
Positive thoughts,
-Kristen Sparkle
Day 190/ 365
Entry 86/183 (A little behind schedule, but I'm working on a back up plan since taking weekend off from the challenge.) <3
@ConquerCRPS & @HippieRaysWays on Instagram
