After I finished my blog on Friday morning, I checked my email and opened something that I was not expecting. It's all that I have been able to think about since. This morning, I have an appointment with the pain specialist to try blocks or injections for my legs. Something I said I wouldn't be willing to do because of my history with this treatment.
I have my brave face on, but I am REALLY nervous because my brain is telling me not to do this, but I have to or I won't seem like I'm trying to get better.
I have had over 50 blocks/injections, 7 stellate ganglions (needle needs to be guided through your neck with an ultrasound machine), 2 months of BioPhoton laser Therapy, 6 sessions of Photon laser therapy, 8 months of Physiotherapy and Occupational Therapy and more medications than I'd like to remember. All of that (except BioPhoton) was to treat the Complex Regional Pain Syndrome- CRPS in my arm. I have had 36 hours pain free in almost 3 years and it was from one of the stellate ganglions, but I was free. It was beautiful and I will never forget the feeling of freedom, or the feeling of it all coming back ten times worse.
After my last batch of 20 injections, I was unable to move my neck at all for months AND my arm was worse. I now have problems in my neck and when I'm cold, I can still feel the injection marks in my shoulders from some of them. It's not a pleasant experience on top of the CRPS, fibromyalgia, herniated discs, pinched nerve and scoliosis I have to deal with 24/7. I should be miserable- but I'm trying so hard not to be.
I promised myself after the last batch of injections that I would not do that to myself again. I know there is no cure for CRPS and I know that injections make me worse personally.
Then the CRPS traveled to my right leg in March 2019 and I pleaded with the Universe to let me get more needles, but in an infusion form. A gradual release of medication through a little IV. -This request was put into my medical file in August 2018 from the last pain specialist I saw. It took ME 1 year to make it happen since no doctors read files around here. I received 1 infusion and the nurse went on maternity leave early. A month later, the CRPS joined in on my left leg too.
So, every time I get treatment, I get worse. But I'm getting worse while waiting for more treatment? I'm not sure which it is, but either way, my body is falling apart. There is no cure for it and it's taking over my life in almost every aspect. I need to try something, right?
My spine has quite a bit of issues, so I am hoping the doctor looks at my MRI before injecting me all willy nilly (I don't even know what that means). I'm signing a waiver again that whatever happens is not their fault and I am TERRIFIED with the possibility of feeling worse after all of this.
There's a chance I could feel a little bit better though... and that's what I am truly hoping for.
Today is an important day for CRPS Warriors around the world as we ask our friends, family and the world to Color The World Orange for CRPS. #CRPSOrangeDay is raising awareness to CRPS and has been for 6 years now! Find something Orange today and wear it in support, please <3
I am TERRIFIED. But I am also a Warrior. May today bring the power of the Universe to my side and us Warriors stand together. If I am stronger, I can help more <3
To be honest, I'm crying and not seeing much of a positive or inspiring spark at this moment because I need to get ready for my appointment. Emotion control is controlled by CRPS too. Fun, yet not fun fact.
Color the World Orange and make today a good day with positive thinking please <3 Be kind to your mind <3
Positive thoughts,
-Kristen Sparkle
Day 218/365
Entry 99/183
@ConquerCRPS and @HippieRaysWays on Instagram