After my appointment yesterday, I started to write another entry. I couldn't finish it then, so I want to touch up on it and finish it this morning. I want to be as detailed as possible over the next 12 weeks.
Here's what I wrote yesterday after my appointment:
I had the urge to vlog for the first time ever, but I cannot for the life of me become comfortable with it.
I wanted to document what I am feeling and thinking right this very moment. So I can't forget. Because I forget everything.
Nurse Sylvia gave me hope that I have not felt since meeting Dr Pollett in North Sydney.
But I have never in my life felt pain like this before and I'm a little overwhelmed with emotions. I feel it's a really good time for a double blog day. (Or so I started)
I have had CRPS-Complex Regional Pain Syndrome since February 2017 after I fell in snow and fractured my forearm.
Prior to that, my February's were filled with nerve damage.
February 2012- after an incredibly stressful and traumatizing experience for me, I had Shingles on the right side of my neck & shoulder.
February 2013- Shingles on the right side of my neck again. Only location for shingles both times were on the right side of my neck onto right shoulder. Shingles are nothing to mess around with.
February 2014- Fell and slipped on ice. Gave myself whiplash and it took me 14 months to recover with Fibromyalgia.
February 2017- I fractured my right forearm and was diagnosed with CRPS almost immediately.
March 2018- Had my first MRI that shows herniated C4 through C7 discs in my spine (neck), that pinch my C7 nerve that go through the right side of my neck down my right arm. Which I believe happened in 2014 when I had whiplash.
This March, after one hell of a journey with my right arm & neck, my right leg started showing CRPS symptoms. Walking became difficult, the swelling gets quite intense, it is freezing cold to touch but feels like blistering fire on the inside.
This morning was my first appointment for treatment with my new pain specialist. I wasn't sure what to expect, like I mentioned in my last post.
I walked into the room with Nurse Sylvia, a vibrant Cuban woman who's energy was radiating and comforting.
She asked me if I knew what we were doing today and immediately jumped into my soul to help. I swear, this woman read me like a book.
She explained BioPhoton Therapy to me, handed me and my husband our safety glasses and started treatment.
We talked for the entire 10 minutes about different ways she can help me and how sorry she was that I am in the position I am. Financially, I should be eligible for multiple forms of government assistance. I should not have to live off of 2.5 hours barely worked a day. She was frustrated that my doctors have not helped so far and told me this doctor should be able to help. She also mentioned that I should be taking medicinal marijuana (wow, I've been advocating this for myself for 2 1/2 years now.) The doctor should be able to help with that as well.
She kept telling me how positive and beautiful I am. How I just need to keep thinking positive and stay happy. I should paint by nails a bright color as a little treat for myself. I have never had an experience like that while receiving treatment. She was a gift.
I am in more pain now than I ever have been, but I signed a waiver that said it was common in the first day to feel this way. I am remaining so positive and hopeful that this can help.
I had the option to choose between treatment on my arm or leg. I decided on leg because it is my newest problem and I would like to see it go for good instead of staying.
---- I became a little overwhelmed at that point and stopped writing for the day. I laid down in bed at 6 because I was just too miserable. So here is my continuation this morning.
The treatment session itself was extremely therapeutic. It was in a dark room, the nurse had a hand held warm laser and was waving it over my damaged leg.
I kept twitching, but I reassured myself that it was my nerves jumping with excitement. This was my first treatment for CRPS in my leg. Where I had the option between arm and leg, I was hoping that we maybe "caught it in time" by treating the leg as soon as possible. My arm can wait another 12 weeks for treatment, I need to walk to work and around in my home.
I was amazed to feel my nerves literally jump inside, when I wasn't twitching. I could feel something microscopic bouncing inside of my leg in reaction to the light she was holding over. It reminded me of those little tiny magnetic shards they showed you in school being picked up, or attracted to and following, the larger magnet in the teachers hand.
My arm was so jealous and still is.
So it was 10 minutes of beautiful conversation with an amazing, caring and knowledgeable nurse. Warm and tingling (non harmful) therapy. I felt good leaving the room. She told me what to talk to the doctor about when I left the room and said she would take care of it too. She was a blessing.
My foot and leg felt tingly, kind of numb. Still uncomfortable, but an ok level for a minute. I still walked funny because the pressure on my foot sent alarms to my hips, but it was only day one. It will get better after 2 sessions a week for the next 12 weeks.
I get to the waiting room and the doctor comes out. We briefly discuss how excited I am for this treatment, BioPhoton Therapy, and I mentioned the things Nurse Sylvia told me to mention: Government disability assistance and my family doctors history of being unable to help. Medicinal Marijuana.
Well, I won't go into it further, but for one reason or another, I can't get some doctors to believe that I have tried everything made available and have fought for myself and my rights for almost 3 years now. I am tired. I want to help others feel hopeful and not lost, like there are answers available for everyone. But I need help from at least one doctor. Just to have one on my side would be beyond amazing.
So, I hobble into the car after our brief chat in the waiting room. I took my shoe off, put my seatbelt strap behind my back so it doesn't touch the shoulder of my bad arm and headed home. It is a 20 minute drive and it was hell for me.
When I got home, I pulled myself up the stairs with my good arm and leg. Sorry for the visual, but it shows how pathetically in pain I was. I had to crawl out of my pants and socks after I barely made it up the stairs. They were causing too much pressure and fire and it took me a good 5 minute struggle to do even that. I made it to a chair and bawled my eyes out with my purple, polka dotted, twitching swollen right leg and foot.
I was a mess for the day. I said that I don't remember being in that much pain before and I might stick with that thinking back.
I smoked maybe 6 grams of marijuana after my appointment. Mind you, non medicinal until I can, so it's mostly THC. But most of the times, a couple of joints can calm my brain down enough to stop sending the intense pain signals and more of a hum of pain. Not yesterday. I had a mess of a day with my leg, arm and neck. I couldn't even drag my leg for the longest time, I was stuck or needed a chair to drag beside me for support to the bathroom.
I eventually smoked enough to get around a bit, but the pain and other symptoms were still intense. I laid in bed at 6 because I was so frustrated with life and exhausted from consumption.
This morning, I have smoked a lot of marijuana from 5:30-8:30am. It didn't stop my drag a leg like it normally does, it didn't touch the fire. Less fire than yesterday, but I haven't "sobered up" yet. Right now, half hour after my last joint, my calf feels like it might explode. Like seriously, this is where spontaneous combustion comes from. (Not seriously, but holy f*ck it could explode). My foot and the rest of my leg are on fire.
I am going to work at 12:30 and I am honestly panicking about how I am going to hobble there. Let alone get down my own stairs.
But, as I am learning, stress and CRPS can go hand in hand. So I am going to start now. First session of BioPhoton Therapy can cause increased pain afterwards, I signed a waiver saying so. It is my sincere hope that I am back down to my regular pain levels by Friday. After my appointment, I would love to have even lower levels if possible.
Work and personal life, with medical hiccups, are kind of overloading me at the moment. But, it's only Tuesday and I already have two entries completed for the week. The rest of the week can be filled with catching up on everything else.
Positive vibrations create positive vibrations.
Help me help others by donating to the second annual Walk to Conquer CRPS ❤️
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
Day 58/365
Entry 28/365
Positive thoughts,
-Kristen Sparkle
@ConquerCRPS and @HippieRaysWays on Instagram