Rare Disease Day

Hi everyone!

Today is Rare Disease Day, an international day to raise awareness. It happens every year on the last day of February. So on leap years, it seems especially appropriate to have Rare Disease Day on February 29th! Did you know that 1 in every 12 Canadians has a rare disorder? Neither did I until I stared researched after being diagnosed with Complex Regional Pain Syndrome (CRPS)…Read More »


Hitting a 10 in the Airport/ My Treatment Tour

Hey everybody!

I recently went on a trip to Arizona for some medical tourism. Many of you have been asking me how it went. Thank you for asking, and thank you for being so patient with my response.

The truth is, it went really well, then really hard, then great, then horrible, and I’m still processing everything…Read More »

Chinook Season

Hi everyone!

‘Tis the season here in Calgary, there is a snowfall warning in effect to the tune of 12 cm! So it will be a white Christmas here…unless a giant chinook happens. In Alberta, we get something called chinook winds, which are huge systems that bring warmer weather quickly via wind and pressure changes. According to Wiki, the largest temperature change ever recorded in 24 hours due to a chinook was in Loma, Montana, where it went from -48°C to +9°C. Fifty seven degrees, can you imagine?! Or when variations of 50°C were observed in Black Hills in 1943…in MINUTES. Seriously. (Links at the bottom.) Read More »

Update & Thoughts

Hey everyone,

I haven’t been writing very much in the last ~6 months. I’ve really been trying to focus on becoming more functional, and I’ve sort of neglected some of the other stuff. Writing helps me to process things, and to mark different events. It’s always hard to balance all the aspects of our lives. I think everyone feels out of balance at some point, sometimes even daily! (Exams, am I right students?!)

As you may have heard me mention before, chronic pain and depression often go hand-in-hand. When your life has changed so significantly because of daily pain, depression can easily follow. When I don’t have enough positive things to share, I get upset with myself. I start to question if I am doing all I can be doing. I question whether or not I could have handled one more exercise yesterday, whether I’m whimpering the day after or not. I question whether I am being honest with myself about my future, or if I’m delusional in some way for believing I will have a life back again. Some of these thoughts are totally illogical or untrue, and are therefore poisonous to my recovery and well-being. It doesn’t stop the thoughts from happening, though.

Like anyone else who goes through mind state challenges, it’s a daily thing to push all these thoughts away. I’m sure many of you know how much energy that can take. I am determined to push for progress, and the mental aspect of it is huge.

So what does progress look like? I’m not on opioids, so that is positive. The new medication, low dose naltrexone (LDN) seems to be helping. I can handle more activity, spend longer standing, and spend longer sitting. Yes, I am training myself to sit and stand again. I can sit in a normal chair for a maximum of about an hour. Then I pay for it with a flare up. I can stand for about 15-20 minutes. This is a big accomplishment for me, because there was a time when I could barely stand for 2 minutes. I couldn’t sit without knowing I would be flared up after. I can also handle more stimulus than I used to, including vibrations, and sounds. I am really enjoying music again, which is lovely. That’s what progress looks like for me.

I am doing my best to keep the pace moving forward. I want to stay on this path of improvement for as long as I can. Keep on keeping on, or something like that.

Here’s to low pain & high functioning days!

OUT: opioids IN: low dose naltrexone

Hello all you sweaty summery people!

I am very, very pleased to announce that I am no longer on opioid pain medication! I started weaning off about 3 months ago, and it has been rough but I passed the finish line. Since I have less pain control now, my function has decreased greatly as a result. I’m starting to get settled in to this new state, but it will take some time. I am so happy I was able to push through and get off opioids to try a new medication regime.

The weaning process included: adjusting to new pain levels, major restlessness, a runny nose, sleep interference, mental blocks/ challenges, headaches, and brain zaps. I must say, it is really difficult being restless when you are mobility compromised! It was just as mentally challenging as it was pain-wise, maybe even more. There were some very emotional visits to my family doctor, with me barely dragging myself in there to cry about how I could barely get up and walk to the bathroom. I still have a long way to go readjusting as far as my function is concerned. Although if you think about it, readjusting my function is something I’ve had to do consistently throughout the last 2 years. Consistently inconsistent, but ideally the trend is up!

The plan is to try out low dose naltrexone (LDN) and to see if it has a positive effect. LDN is being newly used as way to clear up inflammation brought on by microglial cell activation. Evidence suggests microglial cell activation could be a common factor in many neurological, and chronic pain conditions including: CRPS, fibromyalgia, Multiple Sclerosis, Crohn’s disease, Alzheimer’s, and Parkinson’s. Ideally this means I will be taking a medication that targets a possible root of my condition. You know, if the research catches up saying the same thing. Right now there are not many studies that evidence regarding LDN can be collected from. This is the waiting game that is science and the scientific method!

I still have pain every moment of every day, just because I am off opioids does not mean I am pain-free. The opposite, really. I am very hopeful for the possibility of this new medication giving me some type of advantage though!

Wish me luck!


Studies referenced:

Microglia, a major player in the brain inflammation, their roles in the pathogenesis of Parkinson’s disease. Kim, and Jo, 2006.

The use of low dose naltrexone as a novel anti-inlammatory treatment for chronic pain. Younger, Parkitny, and McLain, 2014.




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.