Kristen Sparkle

My name is Kristen & I'm known behind the scenes here as the 'Mama of Conquer CRPS'. I have dedicated my life to 'Helping Patients & Doctors Navigate through life with CRPS' since 2018, after my first year of living with CRPS. With the help of the incredible Conquer CRPS team, our struggles & strengths are helping us pave an easier journey for the next generation of CRPS Warriors- we do not want anyone else to have to go through what we have, or continue to experience. 

Like most of you, I was terrified to be alone in this world with CRPS.

During my first year, I trusted the medical system. I was treated with a few types of nerve blocks & medications from Dr. Bowtie (sweet man), who also referred me to physiotherapy & occupational therapy. I went to every appointment with optimism, patience & much gratitude- I felt like I was the only person in all of Canada who had CRPS & that Dr Bowtie was trying everything possible to alleviate my severe symptoms. He made it obvious that he was confused though. "When the name of a condition changes so many times, like it has with CRPS, it usually means the medical community knows very little about it". 

Since I wasn't 'cured' in those 12 months, he discharged me from the pain clinic without further referrals or recommendations other than encouraging me to advocate for CRPS & inspire others with my positive outlook & story. 'Don't give up'.

So I didn't. I began advocating for myself to find new treatments & new specialists. I was in survival mode & ready to do whatever was necessary to Conquer CRPS. 

Each of the 9 pain specialists that I've seen have had their own version of what CRPS is. Dr Friendly was amazed that 'one arm ACTUALLY has a colder temperature than the other' (shocking report, doc!). Dr Sonofa told me 'not to worry, CRPS almost always goes away in 6 years'.  A family doctor told me that 'CRPS doesn't exist'. They all had different information on the same condition. Turns out, Dr Bowtie was right. The medical community WAS confused. BUT. I found hope through some of these specialists too & that deserves to be highlighted.

In 2018, I created a personal GoFundMe so that I could travel to a small town for a week of intense treatment with a CRPS Specialist before he retired. Dr H Pollett changed my life, along with thousands of other CRPS patients, with his sincere commitment & passion to reduce the complexities of CRPS. Not only was it HIS life's mission to change the way that CRPS was perceived & treated in the medical community, but that vision belonged to his wife as well. Before his retirement, he purchased a Photon Therapy machine for the local pain clinic to treat CRPS patients with & warriors would travel from across Canada to try it. He ensured the small clinic had enough receptionists to handle the overwhelming load of CRPS patient inquiries & paperwork, he formed an incredible team of nurses AND he trained another passionate & dedicated pain specialist to take care of the next generation of CRPS patients in his community. Before his wife's retirement, she opened a new clinic in the biggest city around so that patients could travel to a clean, safe & friendly environment for proper CRPS treatment with knowledgeable & thorough staff. SHE FOUGHT FOR CRPS PATIENTS IN THIS COMMUNITY. Due to the shortage of medical professionals at the time (in 2019), she would fly a pain specialist in from Toronto once a week to treat patients here in Nova Scotia. Both Dr Pollett's were a gift to the CRPS community! Unfortunately, a lot has changed since covid and their retirement. There was hope for a few minutes.

That week of treatment & conversations with him helped form the core of Conquer CRPS. During one of my appointments, he asked me if it was okay for another CRPS Warrior to come into the room because he thought it was important for me to meet someone else who lived with it. I couldn't believe that I wasn't alone! (Special place in my heart for Tammy). After my week of treatment & finally feeling like somebody understood what this crazy life was like, Dr P recommended that I find a doctor nearby who could treat me with Lidocaine infusions because my CRPS was so intense - (I'd be denied by many specialists, travel again to the doctor he trained so I could try a few & am currently being treated once every few months by a family friend who learned of my situation). That week with Dr P began my true mission to not only help myself, but the thousands of other CRPS Warriors in the world. I wanted to become the next generation of hope for CRPS Advocates for both Dr P's, Tammy, myself & everyone else that I knew of or was about to meet.

By that point, I found a new CRPS treatment option that was being researched in Montreal & wanted to help in any way that I could. So the Walk to Conquer CRPS began :) That first walk was another day that changed my life. We're now planning celebrations for the 6th Annual Walk to Conquer CRPS to raise funds for CRPS patients who will be participating in the research of a new CRPS Treatment. (register now or donate directly from our homepage www.conquercrps.com) I am SO thankful to every CRPS Warrior & CRPS supporter that I have met through this annual event <3 Thank you all for your support & strength! 

My personal journey with CRPS after this is disheartening. My struggle with the medical system, denial after denial with financial support for disability benefits & trying to find treatment is enough to feel nauseous over. I've slipped through the cracks of almost every system. I don't think it would be very positive or inspiring to share the nitty gritty details further. However, I will emphasize that the team at Conquer CRPS understands how difficult & challenging CRPS can make every minute of every day & that is why we help others Conquer it.  Every aspect of my life has changed since my diagnosis & I understand how cruel it can be. So do my partners here at Conquer CRPs.

BUT. We also know what it's like to not give up.

To refuse to become another statistic towards the awful nickname that CRPS has.

I refuse to let the CRPS Community & both Dr Pollett's down.

So- I try to inspire, I try to advocate and I try to change the way we all have to live with CRPS. Conquer CRPS has been sharing information, resources, tips & tricks, support for medical providers, CRPS Warriors & their support squads since 2018 & we are just getting started <3 We have accomplished SO MUCH together <3 I've been blessed to connect with another patient from Dr Bowtie & now, instead of a patient being discharged & having to find 8 specialists to find effective treatments- he immediately sends the CRPS patient to another doctor for those infusions I spent 5 years trying to get. So something is working <3

OH- I should also mention, although 90% of my free time is spent trying to execute Conquer CRPS goals- I'm still a person! I'm a step mama to 2 amazing young women, who have changed my life in more ways than I could ever explain. I'm a little obsessed with houseplants & gardening, I'm convinced that taking care of plants & watching them grow is part of my therapy. Animals make me even happier, I used to work with amazing animals while learning how to live with Fibromyalgia. To be honest, a bearded dragon hanging on my shoulder was an amazing heating pad of happiness & larger snakes gave an impressive neck massage- but when I got CRPS, that stopped.  I'm an artist & a collector of many things.  I LOVE laughing, laughter is the best medicine & luckily it's contagious ;) Me & Christine have started a channel on YouTube where we try to just be ourselves & grow. If you want to get to know us a little better, find us there! www.youtube.com/@Painfullyfabulous

I truly believe that if the medical system can't save us yet, we have to save ourselves & create more opportunities for the world to know that: 'CRPS has the highest rated pain & we want the world to know it's name' 

Our motto 'is We Are Stronger Together & Together We WILL Conquer CRPS' - that's because of all of you. Thank you supporting Conquer CRPS 

Thank you for giving me strength.

Christine

Hi I am Christine.
Sept 21, 2004 changed my life forever.
I was 32 and a single mother of two boys aged 9 and 7. I worked full time in a factory. On the midnight shift I fell and twisted my left ankle when I was making adjustments on the machine. When I fell, I was more concerned about who saw me. Boy was I embarrassed. Lol. One guy did see me which was a good thing in the end.  I did report it to my supervisor but thought I was fine. Until… I took my steel toe work boots off. The pain was so intense I wasn’t sure I could finish walking out of the factory. I made it home and went to bed. By noon the pain woke me. It was excruciating, something was wrong.  So I went to emergency. They did X-rays and put me in an air cast with crutches and I was told not to walk on it until I seen an orthopaedic surgeon because they thought I had broken a bone. The pain itself was different. I can’t explain it. Looking back on it, now I know it was likely nerve pain.
So…6 weeks on crutches in an air cast I finally see the surgeon. He told me to lose the crutches and start walking on it. My ankle wasn’t broken, I simply had an extra bone in my ankle that most people don’t have called an accessory navicular bone. I was relieved.
But I thought he must crazy, as soon as my foot touched the floor I was in excruciating pain. I thought it was just because I hadn’t used it. So I thought I would be fine.  Needless to say the pain got worse, along with the burning. I could not tolerate putting on a shoe The colour changes scared me the most. My foot turned almost black. What was happening to my foot. Was my limb dying?  About 2 weeks later I returned to my surgeon and he took one look at it and diagnosed with RSD (now called CRPS)
On top of all this pain I had to deal with work and get WSIB (workers safety and insurance board) paperwork filled out and sent. Which was such an added stress. My surgeon had put me off work after diagnosis with crps.
A few years later my crps spread into my right foot and both hands. I believe it’s in my bladder as well but my doctor has not made that diagnosis as she said she doesn’t think it would affect the bladder
I went through a tough time fighting wsib for over 5 years for what I deserved.  Being diagnosed with CRPS is not easy. I seen many different doctors and felt like a Guinea pig trying every option they presented to me to stop this pain. I was desperate. After many years I learned that I was my biggest advocate and had to learn to voice that.  It was ok to say no to a treatment I didn’t think was right for me. I also learned to research everything before I agreed to anything. I have found a treatment that works for me to manage my pain and I know that not everyone is this lucky.

Another struggle I found living with CRPS was grieving the old “me”. I allowed myself to go through each stage, some took longer than others and that’s ok. I realized others just don’t understand CRPS and I came to accept that, after all you really can’t unless you live it. I learned to educate anyone willing to learn.

Now almost 20 years later, I have fully accepted my new life and am still trying to live every day to the fullest as my spoons allow. I enjoy many things again. I like to craft, spend time with my dogs & watch movies with friends and family. Most recently I have teamed up with ConquerCRPS and am helping to make some changes for our CRPS community.

For anyone just starting this journey please know it’s ok to grieve, just make sure you acknowledge your feelings then move on. Take the time you need l, just don’t get stuck.  Know that although life with crps is extremely difficult, you can still enjoy life. Just in a different way.