Inspiration Tourniquet

Good evening!

If you follow my blog, you may have noticed a real quiet period in the last couple months. As I implied in my last post, Quick Update, it has been a real trying time recently both mentally and physically.

Physically, I had a pretty wicked flare that seemed to last about 7 weeks. It started during December and carried on into January. Of course it’s hard to separate a physical flare from the mental state that either supports it or fights it. Looking back, I think I had a few low days thinking about the upcoming holiday season. This mental drop allowed the physicality of this disease to permeate my body even more than it usually does. My birthday also happens to fall a couple days after Christmas. I had to run away from my little birthday celebration. Well, kick everyone out of my room anyway. The weather was also unrelenting so that always affects me. It’s been up and down since the Big Bad Flare, but I have been able to add some different exercises.

The mental state of a person in pain is a huge determining factor in quality of life. I really believe that. If you can find things to enjoy and be grateful for, it can really help. If everything is daunting and you feel hopeless, it can really translate physically. Unfortunately mental states are easily altered by things beyond our control like depression, anxiety, side effects from the myriad of medications, support or lack thereof, financials, and underlying societal conditions. I remind myself that not everything can be controlled. As long as I can find aspects of myself that I can exercise control over, I can accept that. So, an example (also mentioned in my last post) is the current President of the United States of America. I find many of his words and actions to be deeply disturbing. So, I really try and stay away from visuals and have even started refusing to say his name. I try and discuss him as little as possible and for all intents and purposes, his name is 45.

I titled this post Inspiration Tourniquet because creatively my brain has been foggy and stifled. Sometimes I think creativity is a privilege, although there are those who still manage to turn it out in dire situations. For me, I need a bit of clarity to feel good about the words I share here. I love words, and when I am foggy I seem to lose them. Then the frustration comes. Frustration is an overall crap emotion, it hits me hard on the foggy days.

So thank you, thank you, thank you for being patient. That’s all I try to be, especially with my new life as a host for CRPS.

Zara aka Queen Bizara aka Zarx aka Your Favourite Cripple (right?!)

 

 

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Quick Update

It’s been a while.

Unfortunately this is just a quick post to update everyone on a few things. I am still in a Chronic Pain Program. I am still waiting for a treatment to actually get my pain down. I am still struggling with my lucid/ vivid dreams that seem to yank any type of rest from me.

The state of our world is also affecting me. It’s hard for it not to. A discriminatory, illegal immigration ban signed on a day to remember the atrocities of the Holocaust. I love the USA. I love the land, and many of the people I have met there. It’s hard not to feel uneasy at what comes next.

We all need some extra meditation this week. We can all use some extra deep breaths. As they said during another difficult time at another place in the world, “Keep calm, and carry on.”

Happy Stress Season!

Hello there.

The Season of Stress is full-on. For many, this time of year is a cold, busy, light-in-the-wallet kind of time. That’s at best. At worst it can be a living hell, emphasized by losses new and less new, deeply personal and personally deep. I really hope none of you are having this experience this year, but life isn’t easy so some of you inevitably are. Do your best to keep your head up, I am rooting for you.

I find this season to remind me of the things I have lost. I also see what I have gained, like a community and some wonderful friends, but it just seems easier to see the lost mobility, and life. I have said before I have hope for the future, and I am in a chronic pain program now where my goal is to gain some of my life back. I still have hope for the future. It is kind of hard during the holidays now as I am in a several week flare, had a massive spreading scare, have a birthday coming up, and the first “shit-iversary” of a diagnosis that really has changed my life. On the bright side, there are some wonderful people coming to town who I get to see. I hope you pick up on the flip-flopping nature of this. This month seems to have been lots of hope/dissonance. Perhaps you can relate to this, and this will remind every person that we are not alone in all of these worlds of feelings.

So, Bah-Humbug & Yippee Cay Yay Mother F*cker, aka Merry Christmas, Happy Hannukah, Happy Holidays, and Happy New Year.

Zara

November is CRPS Awareness Month!

November is upon us! I hope everyone had a fruitful & candyful Halloween, I can’t believe it didn’t snow.

November is Complex Regional Pain Syndrome (CRPS) Awareness Month. CRPS is the reason I have been physically disabled for over a year, with no predicted remission in sight. I am very lucky to have a robust, and wonderful support system, as well as a very dark sense of humour that keeps me going. Something I am really looking forward to this month, is Color The World Orange Day, on November 7th. All over the world, landmarks are being illuminated orange on or around November 7th to raise awareness for CRPS. Here in Calgary, the Peace Bridge and Calgary Tower will be orange!

I know this blog has been very slow lately, and I’m sorry for that. I have been doing as much physical rehab as I can on my own, and so this word stuff is coming in at the end of my priorities. I have also been lucky to make some new friends recently. Always awesome!

If you want to find out if a landmark in YOUR CITY will be orange for November 7th, please visit: http://www.colortheworldorange.com/celebrate/#color-the-world-orange-2016    This is a long list (yeehaw!), so use Ctrl-F, and type in your city to search the list quickly! There are city halls, bridges, fountains, towers, public art, sculptures, cultural landmarks, and historical landmarks participating. Tour around the website to find signs, press packages, and other items.

Orange is the colour. If you are a very cool-toned person like me (I am also very pale right now), try a headband or something smaller if you want to join in! I hope to see some people on the Bridge on November 7th!

To learn more about Complex Regional Pain Syndrome, please visit any of the following sites/ links:

http://www.rsdhope.org/  [An excellent website that uses the older name for CRPS, Reflex Sympathetic Dystrophy, or RSD. Full of treatment education, testimonials, personal stories, awareness campaigns, and more.]

http://www.burningnightscrps.org/  [A UK-based awareness organization. They also have a Facebook page to follow along on social media.]

http://www.rsdcanada.org/parc/english/index.html  [A Canadian organization who helped me connect to some peers, who are now very close friends.]

https://docs.google.com/document/d/1ZaK9QrW8SD7AuJEdvPmccewKL0A_LN4HMp70afL_azk/edit?usp=sharing  [A link to a document I prepared for a Biology Students’ Colloquium in early 2016. This is intended for an audience with some type of post-secondary scientific knowledge. If your doctor is having a hard time understanding, this document may be in a format more relatable for them!]

E-mail link for the Calgary CRPS Support Group: calgarycrpsgroup@gmail.com

Cerebral Challenge

I hope everyone is having a good day, with lots of spoons and not a lot of pain! Indulge in some unsolicited advice, and take three deep breaths right now. Because, why not? I love deep breathing, and I did it long before I ended up with CRPS.

This is a short post to express what has been going on lately. I have three more weeks to wait before my team doctor appointment at the multidisciplinary clinic. I have had some very polarizing days lately. Definitely some iffy-in-a-bad-way days. It is what it is.

One of my greatest challenges lately has been a big old brain game. The Cerebral Challenge. A mental barrier, or Brain Fog as many know it, is a very real aspect of CRPS that some patients experience. My Brain Fog has been cranked up to 11 lately. The unfortunate thing is this fog has really postponed some important work I volunteered for to help some peers. I usually don’t struggle with words, or putting thoughts together coherently. CRPS isn’t usual though and its effects on me certainly aren’t either.

So I am sorry if I’ve been distant lately, but as I say all too often, it is what it is.

love&twerks&spoons

Progress Maybe?

Hello, everyone!

I am happy to report after waiting for many months, that I have been accepted into a multidisciplinary pain program! My first assessment with a doctor is in November, so I hope to be making a solid rehab plan soon.

The timing for this seems to be great, as I have been pretty down lately. I am constantly doing anything in my power to rehab myself. However, without pain control I have really hit a wall. I was nearly in a wheelchair around Christmas, and now I use a cane most of the time. I still need to use a wheelchair sometimes, but it is not my main mobility aid. I could barely put my foot down months ago, and now I walk with that foot all the time. I have made progress by myself, but it has plateaued.

I am still feeling very unsure about the future, but what else is new? This is just a short update because I feel like I have been pretty quiet lately. Also there was a flu and hospital incident, yay!

Hope everyone has a low pain day.

MLA Meeting Ahead

I am very excited to announce that I am having my first meeting with my MLA (a Member of the Legislative Assembly) next week to discuss healthcare for chronic pain patients in Alberta. I have many ideas about what isn’t working in the province, so I feel as though I owe it to myself to let the government know. I’m not ready to lobby the government until they change yet, although that sort of is a dream of mine for the future.

What do I hope to accomplish? I hope to truly illustrate to my MLA that pain patients are being left behind in the province. With 1 in 5 Canadians having chronic pain, if we are behind now we are already hooped on addressing the chronic pain problem. Alberta needs more education for both public and health professionals, more programs to deal with complex issues, and more funding to accomplish this. I also really hope to be an example, a 25-year-old woman who is benched and withdrawn from university and our society, because my province is too scared to make me worse, and I am constantly getting rejected from the very programs created for pain patients like me. I hope to be clear, back everything up with fact, and blow their minds on the failure going on in our system.

Wish me luck.