My Summer ‘Blip’

Hello, lovely people.

I’ve mentioned some “medication changes” lately. One of the medications involved is an opioid pain medication. I am in the process of transitioning out from this regime, which causes a multitude of its own problems- tolerance, dependence, central sensitization, constipation, drowsiness, and more. After I wean off opioids, the plan is to go on a low dose naltrexone (LDN) regime. My medication regime has slimmed down the last few months, but it’s still complicated at times to figure out which drug is responsible for which effect. I hope that the LDN has a clear, and positive effect.

Long-term opioid usage is something I have never been comfortable with. I understand that for many chronic pain patients, starting an opioid regime is unavoidable and necessary. That’s exactly how it was for me.

I’ve only mentioned “medication changes” in a non-specific sense before this post. I do believe I am an open person, but there are still things I am not overly open about. I was lucky to have a very open and honest visit with someone I care deeply for, and it really helped my mood. I was able to sit up for a bit, then I had to lay down. I was able to quietly cry without feeling guilty for bringing my visitor down. Usually I have some guilt about that. That visit encouraged me to talk about my medication changes more openly, and get some of my thoughts out regarding opioids.

I hate the stigma associated with opioids. I hate the fact that I’m on them. I hate the fact that prescribing them wasn’t taken seriously by doctors for a long time, and that now there is a crisis. I hate how pain patients who really need pain management are blocked from opioids in fear of this crisis.

I hate how much function I’ve lost since starting the opioid weaning process. I hate how it feels like a huge step back when I can’t do the exercises I worked so hard to be able to do. I hate the adjustment period when my body is forced to adjust to a new pain level.

I tell myself everyday that this is just a blip. I allow myself to hate parts of it, because it seems to help me stay hopeful it will be over at some point. I tell myself to be even more patient than I’ve already been. I will readjust, it’s just taking time.

Today I managed to go on my stationary recumbent bike for one minute. This is the first time I’ve been able to get on it in 3 weeks.

It’s just a blip. It will be over before I know it. Breathe, rinse, and repeat.

 

The World We Live In

Once again, it’s been a while.

A few things are happening that contributed to my lack of posts in the last month or so.

It’s really two things: medication changes, and the state of the world today. I can’t be the only one who works through emotions on a daily basis, hearing about the lives of people across the globe. I am privileged in a plethora of ways. The vast majority of world issues do not affect me directly, I am very aware of my privileges in that sense. Unless you have a giant pair of horse blinders connected to rose coloured glasses, I think it’s impossible not to be overwhelmed by the world we live in…

*Warning: This is a very heavy post. Topics include war, suicide, violence, and oppression..* Read More »

Saying Goodbye to My BSc.

Before this new and different life of mine, I was studying for my Bachelor of Science (BSc.). I was lucky enough that I fell in love with my Cellular Molecular Biology major.

Before I developed CRPS, I was a regular student worrying about my grades, and trying to figure out my next step.

I know the education I was receiving was a privilege in many ways. Now I know that studying for my BSc. was a physical privilege as well. A physical privilege that I no longer have.

Read More »

How CRPS Made Me Quit Listening to Music

I had to quit listening to music because of Complex Regional Pain Syndrome. It’s true. I am slowly beginning to integrate it back into my life, but it’s been about 20 months since I enjoyed music.

Complex Regional Pain Syndrome can cause allodynia, where allodynia is an extreme response to an innocuous stimulus. For me, allodynia causes vibration-sensitivity, sound-sensitivity, issues around any breeze/wind, and more.

When I had to quit listening to music because it caused me physical pain, it was also very difficult for me emotionally. I have a deep history with many different kinds of music. Read More »

Spring News Rant

Wow. It has been a while.

Like many people who deal with CRPS, I am on many medications. Sometimes the medications, or combinations of them make me feel quite dulled mentally. For all my openness, I still can’t put something on here knowing that the writing isn’t totally me. The good news is that those combination of meds have been changed. The damp rag over my brain has dried up! ! !

Keep reading for more news on all things Zara. Yippee-cay-yay-MFer. Read More »

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?!)

 

 

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.”