Well, I wasn't expecting things to move the way they did. But they finally have and I am thankful for that.
Let's backtrack just a little bit so we can experience this journey briefly.
As I've mentioned before, last April was my final appointment with my first pain specialist. We had tried multiple nerve blocks, stellate ganglion blocks, medications, physiotherapy and occupational therapy. I just wasn't getting better with the CRPS treatments and my spine was sort of damaged and eliminated the question of an SCS. So, he told me to not lose hope, stay positive and share my story with the world to inspire someone and myself. Excellent advice given the circumstances at the time.
I thought I was alone and just dealing with CRPS as is, it wasn't getting better. I wanted to find something that I COULD do instead of focusing on all of the things I could no longer do. I started researching and found PARC (Promoting Awareness of RSD/CRPS in Canada). Helen Small, the Executive Director, wrote back and forth with me at least twice a month (and still does to this day). She informed me that there are more than 1 treatment options for CRPS, many more than 1. I wasn't alone and just dealing with CRPS. I was becoming a Warrior.
She informed me of a CRPS specialist 4 1/2 hours away from me, and the new types of treatments that he offered. I went to my family doctor, after a long journey of pain with her already, and asked for a referral for a doctor 4 1/2 hours away. Prior to this, I had difficulties arranging transportation for treatments in the city or physiotherapy down the road. But I made it work and I had a weeks worth of treatments before he retired.
The week was a little intense as we tried various things in a short time and there was lots of time spent in a vehicle traveling back and forth. But I was hopeful, because his wife and him were helping open a new clinic here in my city before they retired, with CRPS specialists.
I wanted to get a referral into PCC (www.paincareclinics.com) since they talked about opening last August. I asked my family doctor for a referral, and she wanted me to see her friend first. Dr. Hernandez. And well, anyone who has been following for the past little while might remember the torture I went through twice a week for a month trying to get better with BioPhoton Therapy. The least invasive treatment option I have had so far, highly recommended, but it doesn't work for everyone.
In my unique situation, I have felt worse since starting treatment, but that is me.
So, since August of last year I have wanted to continue with the CRPS specialists and what they have created at PCC. My family doctor had me wait until April to see Dr Hernandez for consultation, then until May for her to receive my EKG results (that were needed before our treatment plan started because she needed to figure out my baseline for lidocaine treatments, which is what I thought we were going to do with the BioPhoton Therapy and get my marijuana license because that's what we discussed.) BioPhoton was the only treatment available in her office for me, walked into an infusion room twice a week, but my BioPhoton started at the end of May and ended the end of June when she referred me to PCC. These are just the facts, I'm not going to bitch about NOT getting the lidocaine infusions we discussed and I had the EKG for, because a lot more CRPS patients have success with them compared to the laser. But who am I? Just a patient progressively getting worse, waiting for the doctors to make the right call and feeling like a jerk for fighting them for it.
Dr. Hernandez referred me to PCC at the end of last month. I got a phone call Monday morning, and I'm going to be assessed by a nurse today at PCC new Halifax location!
FINALLY
Almost a year later, but I am in!!
My arm has had CRPS ruin it since Feb 2017 and my right leg has joined the party since March of this year. It fucking sucks. Words cannot describe how much it sucks. EVERYTHING hurts, and intensely. Rated 42 out of 50 on the McGill Pain Index. A simple hug can feel like pain. It's not fair. I need relief. So do the THOUSANDS of other patients with CRPS.
So far, the walk has one online donation. It's mighty too. From Staples Contact Center, where I work. They have donated $250 towards the medical research that is happening in Montreal.
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
Donate if you can. $5 here and there adds up. Anything over $20, in Canada, you will receive a tax receipt for you to claim on your taxes this year. Donations outside of Canada are still greatly appreciated and encouraged :) <3 If you're unable to donate, please take a minute to share the link with your friends and family members.
CRPS has awful nicknames, it create fire under our skin and causes an intense toll on every aspect of our lives. Please help me help others by donating to the cause.
One day, someone will go to any doctor with these obvious symptoms and the patient will be directly referred to specialists. DIRECTLY, before it's too late. 'Early Diagnosis is best prognosis'
And one day, we might even find a cure.
May today be a great day filled with smiles.
Positive thoughts,
-Kristen Sparkle
Day 115/365
Entry 51/183
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