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!

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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.

 

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

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 »

The Inner Process

Everyone has an inner voice, and thought process. From what I gather, this is a messy place for many people. I am one of those. My inner voice has always been very hard to silence, and is more negative than positive. As I say often, it is what it is. I have learned methods over the years to control and manage it, stopping negative thoughts as or before they happen, and making my mind a more peaceful place. It’s never easy, but it has definitely proved fruitful. I am a lot happier with the balance of the process staying in the positive realm. My inner process is definitely a hallmark Pickel trait. I saw it daily in my grandmother, exacerbated by the dementia at the end of her life. I’m not sure she was lucky enough to develop methods that worked at keeping the negative and self-doubting side balanced. As a result, I don’t take it for granted that I have managed to find my own methods.

I went to a lovely wedding on Sunday, and I felt very lucky to be able to attend. I used a wheelchair, and it made the 5 hours (I know, right?!) I spent there possible. The ceremony was beautiful, between two people who really love and complete each other. It was one of my favourite venues, and had a really neat vibe.

The Inner Process really got to me on Sunday…Read More »

Preparing for the next Exhausting Excursion

With CRPS, it is very hard for me to go out. I have difficulties with my mobility, and being “comfortable” when not in my house, but the hardest by far is the anxiety about people, and people. A perfectly OK day can turn sour in less than a second if someone brushes by me too close, steps on me, bumps into me, or touches me on purpose (yes, it happens). Even when I warn people about my disease and not to touch me, they still do it. People suck sometimes, what can I say?

Some events are so important to me, that I accept all of the vast and sometimes unknown dangers to attend. The next event coming up that will wreck me physically but lift me emotionally is a family friend’s wedding. I am very excited to go, although when we were first invited I never thought I would be unable to dance, walk on my own, or even enjoy a Scotch. Life, it will surprise you. I am very excited for this wedding. The bride and groom are a wonderful team and I am very happy I get to join in.

So, in an effort to let everyone know what it REALLY takes, here is a list in no particular order. I present to you, The List of Things I Have to Consider Before Attempting Excursions in My New LifeRead More »