On every Monday since August 10th, I send another hopeful email to the new pain clinic. Just remember, I waited and fought with the medical system for over a year to start a type of treatment that a CRPS specialist wanted me to try. He was retiring but put it in my file "INJECTABLE COMPOUND RX". I have my file, I have seen it all. My family doctor did not want me to go to this new clinic that offered these infusions, she wanted me to go to her friend first. So I did. I walked through an infusion room twice a week for 2 months almost. Walked through the room to get laser treatment on half of my leg. I felt it made me worse through the 2 months. My mother, husband, work and me all saw that I was getting worse. So I asked that doctor, please send me for Injectable Compound... Magnesium, Vitamin C, Lidocaine, I don't care... just help please.
So she sent me to the new pain clinic that I wanted to get into. Problem is, now that we waited so long, the on site doctor retired. They have a doctor coming in once a week from Toronto with all of his staff. August 10, I met with him and he altered the schedule to get my treatment started that day. Because my health is deteriorating. I am terrified of needles, but I got my first Lidocaine Infusion. I was supposed to have one once a week for 5 or 6 weeks, but my nurse went on maternity leave early.
So, I've had one infusion and haven't seen a doctor since. In the meantime, I organized the 2nd Annual Walk to Conquer CRPS and raised $1,900 for medical research happening in Montreal. I couldn't walk the event but it was still special. I have continued to try to work and walk as much as possible. But the CRPS symptoms are traveling to my left leg now too. Both of my legs and my right arm. Walking is fucking torture, especially with shoes on and un-medicated.
Yesterday morning I received my weekly update from the new pain clinic. Lidocaine infusions have been stopped with no estimated time to resume.
Well fuck me running...
I was kind of sad yesterday morning, kind of pissed off. I had to go to work and make it a good day though. I tried. Walked to work in the rain, made it to my computer just in time to not be considered late. My feet and legs were balloons and I was miserable already. But I pushed through and took a few calls. I was in so much pain, I was moaning and groaning, shifting my body every couple of seconds or scratching because of the itchyness I keep getting on my affected limbs now (What the fuck is that all about?).
I took a call from a very sweet woman who was under a lot of pressure to downsize a medical office. I spent time with her and gave advice, I was patient. I smile when I am on the phone and my customers can hear it. But this woman was special. She even took a minute at the end of the call to thank me for my kindness, my advice and my personality. She said I made her day and she made mine. I got off the phone and my coworker said "You know? you look like a completely different person when you are talking to customers. You look happy and not bothered by reality."....... I started to cry... like a messy mayday cry.
I do look happy when I am on the phone because I want my customers to think I am so they don't talk down to me. I want them to enjoy their experience and feel comfortable and confident in my skills to handle the situation. I don't want them to know that my brain has NO idea what it's doing or that I have to wear a giant hat to block the surrounding lights, an ear plug to block the noise, giant red fluffy slippers and a blanket on trying to battle the environment from my allodynia. I don't want them t know that I shouldn't be there.
But everyone around me knows that I am not happy. They see the tears in my eyes and watch me try to walk around. It's embarrassing and yesterday was my tipping point I think.
BOTH LEGS. NO TREATMENT. I'm miserable and on fire and miss just being actually happy instead of faking it. I used to give everyone hugs and smile cards and now I'm fucking miserable.
So I asked my boss to let me leave early again. I won't get into the rest of my shitty day, but let's just say my family doctor now needs to fill out more paperwork for me to continue working again. My husband is quite overwhelmed and at a loss with only knowing a quarter of my situation.
I can't walk and it seems I might not be able to work much longer. I want to curl up into a ball and just admit defeat, but it's not an option.
Today I will hopefully work my full shift and come home to work on wonderful dreams. May these dreams become a reality.
Make today a great day with positive thinking. Even when reality isn't kind like mine, be kind to your mind.
Positive thoughts,
-Kristen Sparkle
Day 178/365
Entry 81/183
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