Accessible Kananaskis Adventure

Hello everyone!

I had the immense privilege of a 2 night trip into the Kananaskis with my father (Big Al), and the dogs recently. We stayed at the William Watson Lodge, an accessible way to experience Peter Lougheed Provincial Park. There are cabins, campsites, a hut, a trailer, over 20 kilometers of paved walking paths, and picnic sites. They are all accessible! I was able to go for one big wheel down a ramp to a lookout, and back up again. That was my main adventure but I will be back to the Lodge again for more…Read More »

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Colour The World Orange Day!

Today marks 2 years of being stuck in a bed. I no longer describe myself as “bed-bound”, but physically I’m still in that realm. I am able to get up more, and I have made progress but Complex Regional Pain Syndrome still runs my life by placing major limitations on what I can do. These annual dates of things like my initial diagnosis, school drop-out, etc. get weirder and weirder every year. There is something really neat going on today that is a cause for celebration, though!

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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!

Product Review: Oska Pulse

Hey everyone!

I mentioned a couple months ago that I was trying out a new device for my chronic pain. The product is the Oska Pulse. The Pulse is a wearable Pulsed Electromagnetic Field (PEMF) device that is supposed to restore electric potential to cells and re-normalize them. It’s small, light, simply to use, non-invasive, and appropriate for many people. However, if you have any sort of implantable electronic device (e.g. pacemaker, spinal cord stimulator) then this is not the device for you. For some people, the Pulse appears to be life changing in the way it decreases chronic pain and inflammation. Oska claims that 9 out of 10 people get relief from the device. The cost is $399 USD. There are promo codes sometimes giving you $50 off.

Unfortunately I was the 1 in 10 that did not seem to benefit from this device. I tried for months, sometimes 8 times a day. I was not able to wear the device because of my various sensitivities to touch, but it did not feel like anything when it was on. I was worried I would notice some sort of sensation, even though Oska says you will not feel anything. I was pleasantly surprised because I didn’t feel anything. No issue there.

The device has one button on it, and one USB plug-in for charging. This made it exceptionally easy to use. I got about 30 sessions out of a charge, with each session lasting 30 minutes. Pulsing glowing lights on the device indicate when it is turned on, with a solid light when it is charging.

Oska has a 90-day money back guarantee, which they extended for me to let me try the device for longer. They gave me an extra 60 days to see if I could get results! I thought that was great, because they really seem to want their device to help people. It is still a business, but remember there is no better marketing than satisfied customers. For orders in the continental U.S., Oska will pay for return shipping as well if you need to return the Pulse. Since I’m in Canada, I did have to pay to send it back. It was about $28 for the shipping. The refund went through very quickly with no issue after Oska received the device back.

I gave the Pulse a good trial, and I’m sad to say I did not receive any noticeable benefit from it. It’s too bad that it didn’t work for me. I really wanted it to, for many reasons. My mom tried it out as well for her various aches, she thought she got some benefit from it but she had to use it on too many areas.

Now we arrive at the ultimate question for a product review. Would I recommend this?

Yes. I would recommend this product because it has the potential to help and does not have the potential to harm when used appropriately. (Remember this product is not suitable for people with implanted electronic devices.) The return policy is awesome, so the most you will be out is the shipping price if you are outside the U.S. If the Pulse does help enough to replace other modalities, it could actually save you money in the long run as long as you are in the position to invest initially. So even though the Oska Pulse didn’t work for me, I would definitely recommend this product for the low-risk high-reward possibilities.

 

To go to the Oska website, click here.

 

*This review is not sponsored by, or affiliated with Oska Pulse. All opinions are my own, and are not being influenced via payment/ paid content.*

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.

 

Awesome CIB Holiday GIVEAWAY

Hi, everybody!

I joined a network this year, Chronic Illness Bloggers (CIB). The network is for bloggers focused on chronic illness, with 380 bloggers a part of it currently. There are many different chronic illnesses discussed, with many different ideas and viewpoints from wonderful, real people! For someone like me with a rare disease- CRPS, different blogs and community posts have really helped and continue to help me get a handle on things. It really is a community, and the camaraderie is inspiring…Read More »