The struggle is real

I have been on a mission to raise positive vibrations and awareness for answers with CRPS. I want to inspire people to think positively for the most part in their lives, no matter what the struggles are. Like living with CRPS (Complex Regional Pain Syndrome-formerly known as Reflex Sympathetic Dystrophy).

I want to mention that CRPS is not my only daily battle. I have many and the struggle is real. But I keep trying to make today a good day with positive thinking. Which is what I am going to touch on here.

So I keep saying "make today a great day with positive thinking". It sounds pretty easy if you just picture me as this happy hippie who colors everything rainbow and is simply majestic, regardless of CRPS. No stress in the world other than physically getting better..tra la la..

Well.

First off, I need to remind myself and you that CRPS is rated 42 of 50 on the McGill Pain Index. It's higher than any other rating on the scale in comparison to child birth, amputation of digit and other painful situations. Our pain is pretty fricking consistent too. Always there to remind us that we can't use that part of our brain properly because our nerves are messed up. (Don't stress about it though. I think stress caused our weakened immune system to make us susceptible to CRPS after trauma. Stress is not the answer.)

So I'm always fighting that.

Medication disconnects me from my spirituality and positive vibrations I am trying to raise, and they do not touch the pain at all. So I have tried so many, but without success. I'm hesitant to try any new medications (Except low low low dose of naltrexone because of the newer research and CRPS pain relief, I would be interested in trying). I have mental disorders as well and they flare up too much when medicated.

I consume marijuana for pain relief. I have yet to meet a doctor to prescribe it to me though. In Canada, this statement is absurd. So I have to find a way to purchase it myself and hope that the quality is of some medicinal benefit. Patients across Canada with sleep problems or Fibromyalgia are given marijuana medicinally (a lot covered financially by our free health care in Canada). I have both of those conditions, with a lot more, and am denied. (Is it the gauges in my ears or tattoos? Not sure, but I question it more and more these days.) I know of a few patients who are denied and it is frustrating considering the alternatives and the opiod crisis in Canada.

So this is blending into my doctor, I'm going to dabble on that again, sorry. The woman is just not nice to me it seems. My husband even went in with me once and afterwards told me how much she doesn't seem to like me. She's nice to him.

I have a crap history. I fell twice. First time I was bed ridden for 14 months. I had to learn how to walk again. I received 1 short term disability check over that time because my family doctor couldn't help with paperwork. After lots of physio, medications and hell, I went back to work and promised I would never ever take time off work again. I could push through.

So when I got CRPS a few years later after falling again, that's what my doctor told me. Push through. Work what you can. I came back to work part time after having my cast removed and haven't worked a full time shift since February 2017. I have asked my doctor multiple times to put me on short term or long term disability. Paid for the paperwork and she filled in the answers with "unable to answer". I was continuously denied financial assistance through insurance because of this, and unable to take time off of work to heal.

But my employer could see I am physically disabled. I am physically in a lot of pain and I am really pushing to get my body to work without having a breakdown.

They have continued to work with me for over 2 years now to ensure I have a job, regardless of my doctor's medical supporting documents. But I have lost all of my benefits due to lack of hours worked. I can't even apply for long term disability at work now that I have other doctors helping me too, I don't have insurance. I can't apply for unemployment insurance because I followed my doctor's advise and worked what I could...which turns out to be very little.

So I have been needing financial assistance for over 2 years now. Disability Tax credit, my family doctor won't sign the paperwork that has been filled out for her. She suggests the occupational therapist I saw over a year ago now, signs the form. She agreed to fill out my CPP form after I told her how frustrated I am with my limited options that she has left me with, but I have no idea what she filled out if she wouldn't even sign the other form. I need to stop working, but need to financially live. I need to heal. But instead, I keep stressing about walking to and from work for my 2.5 hour shift that I spend half of it in personal unpaid time groaning or moaning in pain. I make less than $200 every 2 weeks. That's almost $400 a month. For the record, my mortgage is more than my paycheck, and this has been over 2 years of living.

I'm financially screwed and my husbands family is getting tired of picking up the pieces for the bills. Understandably.

Brings me to my next point.

I'm married. But my husband didn't marry into this. My 14 month stretch off work was 3 months after our wedding and 2 months after we bought our first house.

When my husband and I met, I was an independent woman. I paid the bills and had extra to buy myself things, like good food. A new shirt. Nice decorations for me apartment. I invested in a large hula hoop collection, I danced, exercised, I was a model. I worked at a fricking reptile zoo, educating the public on the importance of not owning exotic pets. I was cool back then.

I stepped out of my comfort zone this week and did a CRPS selfie challenge and I think that's when my wave of reality hit me the hardest.

I went from this:

To this:

And that sucks.

For me and my husband. I can feel his perspective.

So I have maritial and financial stresses. In addition to self esteem issues and constantly trying to tell myself that everything is ok.

I am quite overwhelmed.

But my mission is to keep pushing through with positivity. Everyday. Regardless of my physical body crumbling and my reality increasingly stressful beyond what I will write about.

Life is extremely tough, but I only have the option of pushing forward the best I can. I have my moments and days where reality crushes me and my spirits, but I have to pick myself back up. I won't find an answer for the cure if I don't, anf that is my mission to see.

I can't make my reality magically stress free. There's no way to do that. "Being happy doesn't mean everything is perfect. It means we decide to see beyond the imperfections".

Stay strong and positive. It's the best option I can think of.

Day 13/365

Entry 7/183

Positive thoughts,

-Kristen Sparkle
@Conquercrps on Instagram-Warriors helping Warriors-