My Journey

blogging, challenge, chronic pain, CRPS

Week 2 is finally over

Last week, I thought I was overwhelmed with everything that had to be figured out over the next few weeks. This week, I’m just not convinced that this is going to be an achievable option for me much longer. One week at a time though.

Wednesday morning, I left at 7am to go back to Cape Breton to start treatment. I was nervous about the drive, nervous about the needle, nervous about medication side effects and sensations. As we got closer to my appointment time, I became nervous that I’d miss the appointment because of all the construction we were delayed in. Only 10 minutes late, I put on my mask and walked into the hospital to answer the covid questions at the entrance. Got upstairs to the pain clinic, answered the same questions and then was directed to my chair.

My temperature was a little high after all of that, then the concern of my higher temperature had my heart rate and blood pressure increase. It was an interesting check in. But I got hooked up (without an ativan like I normally need for needles because of my intense anxiety). I was proud of myself for making the journey and reaching my goal.

During my time there, I connected with 3 other CRPS warriors who each had their own amazing story. It was incredibly personal and personable in that room. I will never forget when I walked in there and started talking with them. My own fear, pain and anxiety disappeared until the alarm went off 🙂 I was consumed with wanting to understand and support these complete strangers. Because I knew how it feels to live with CRPS and I know what comes with it for the most part. I know and understand the term “suicide disease” from all perspectives.

THAT’S WHY I TRY TO MAKE TODAY A BETTER DAY FOR MYSELF AND OTHERS.

My good hand is purple in the right light, and the pain goes up to my elbows. Afterwards, I felt like I was slightly buzzed on wine and fine herbal for about 12 hours. Standing felt weird we could say. The pain my my good hand was worse than my CRPS limbs for a bit, but my swagger was still in my step and my arm oddities remained. Today, I feel the same way I would in these weather conditions after a stressful week. I’m a little extra sore, but I think and hope it is understandable.

All of the travelling hurts. Even though I was fortunate enough to stay for the night these past 2 trips, 4 1/2 hours drive 4 days in 2 weeks is a lot for a person with CRPS and other chronic pain conditions.

Next trip, I think we’re going to see if I can handle the 8 hours in one day. It’s next Friday. When I get home after the journey and treatment, my step daughters will be here and it’s going to make for an interesting night. But these are the things that I have to do to try to Conquer my CRPS medically.

My one trip is turning into 6 in the end, but I shouldn’t complain. One person I met has been doing it once a week for 14 months I believe he said. I have to try to make these trips work.

I won’t know if these things are going to work or not for another few weeks, so I gotta keep trying and travelling.

Tired, I am.

But, it’s Friday and I have a shift of work to complete before I can unwind after this chaos. I’ve missed enough time lately from this damned disease. Wish me luck.

Be kind to your mind and to one another ❤

Positive thoughts,

Kristen Sparkle

@conquerCRPS

#CRPS #CRPSAwareness #CRPSWarriors #chronicPain #invisibleIllness #spoonie #unbendablespoon #conqueringCRPS #bekindtoyourmind #strongertogether #youarenotalone

chronic pain

Just the beginning- Week 1

Let me just start this all off with:. I had no idea that my journey would lead me to where I am today, yet it has. Here I am. Exhausted. Sore and so confused with overwhelm. Starting a new journey.

Towards the end of July, I decided to put myself first for a bit. Instead of focusing on how I could help everyone around me, I needed to help myself. I felt like I needed to stop waiting for things to work themselves out and I needed to starting working them out once and for all. So, I started a GoFundMe page and tried to raise $600 in order to travel for medical support, knowledge and possible treatment.

Well.

I am incredibly thankful that I did that and have such amazing people in my network of friends and family ❤ I raised the funds in under a week. I didn’t know that I’d be needing to raise more, but more on that later. Or next week.

My family doctor sent the referral and after a little over a month of waiting: I received my phone call for an appointment. I was going back to a clinic that understood CRPS and it was only a 4 1/2 hours drive away. (‘Only’ seems so nonchalant- but that drive is painful)

When I had made this journey in 2018, it was to see a doctor who was about to retire- but was a CRPS specialist. Possibly the only one in Atlantic Canada. I was directed to find a place to stay for the week and I would receive a weeks worth of treatments. So I did. It was an intense week, but I did.

Turns out, this time is going to be a little different. From a medical perspective, I respect and understand why. From a patient perspective, I’m a wee bit overwhelmed. This one trip turned into two at first, because the doctor needed to meet with me first and check my progress since the last doctor in that office saw me in 2018.

I drove up Monday afternoon so I could save my body some pain from being in the car 8 1/2-9 hours out of 24 and because my appointment was so early. At 7:30 AM yesterday morning, I walked into the new CRPS specialists office.

I’ll admit, I might have cried a little to myself once I reached the hallway. It’s been quite a struggle to get back there. A lot has changed for me.

But once I walked into that office and met Dr E, I knewall of this was worth it. He understood, has knowledge and honesty. It was incredibly refreshing. He talked to me like an equal, who understood what was going on, instead of looking down on me with confusion and disregard.

Only problem is: I have to drive back there once a week for 4-5 weeks instead of just one trip of 4-5 days. That’s 4 1/2 hours there, treatment and sleep, then 4 1/2 hours back home. Work the days, or possible hours before and after because I cannot afford to miss any more of my scheduled shifts or wages. I’m exhausted from this one trip that cost more than I thought. 4 or 5 of these??? And if that doesn’t work we can try one other option?

This isn’t a problem, it’s a hurdle. Right? Oye. My brain is overwhelmed, my body is sore from all of this and I gotta get ready for my shift. BUT I’m going to start sharing my journey again here hopefully once a week with updates.

Next week, I go for my first treatment. Lidocaine infusions. Something I’ve been told by 4 pain specialists now that will be my best option and this is the only one who can help me with it. Isn’t that insanity? If you don’t think so- go back through my blog when I was going to see Dr Hernandez in May 2019 for these infusions and she decided on BioPhoton therapy instead. Even though, I told her the BioPhoton caused the most intense pain for 24 hours afterwards, she had me walk through her infusion room twice a week for almost 2 months and sent me to another clinic for infusions. My nurse went on maternity leave after I finally received my first of 6 infusions in August, 2019. I’ve been waiting 2 years for these and have been fighting for them all along.

The most forked up part about this entire situation is: they might not even work. Heck, they could even make me feel worse. BUT. There’s a good chance they could help. And that’s how much pain I’m in. Even if you don’t see it when you look at me until I walk or try to use my arm normally (I’m getting a little better with my ROM). I have to go through all of this to try to MAYBE feel better.

CRPS is a life changer. Without medical support and knowledge, it can make a person feel lost. Even a Sparkly, positive person like me. I’m not a fan of medications and I am proud to be mindful and understanding in most situations. But I’ve been waiting 2 years on a “what if I could feel better” opportunity and you best bet your bottom dollar that I’m going for it now that I have my chance.

That’s all for now. Week one is done. 8 1/2 hours driving and 13 hours sleeping in 48 hours. Week 2 will be a little smoother hopefully, I will find out on Wednesday ❤

Be kind to your mind and to one another ❤

Positive thoughts,

Kristen Sparkle

@ConquerCRPS

#bekindtoyourmind #CRPSawareness #CRPSwarrior #CRPS is #RSD #CRPS1Name #MedicalJourney

blogging, chronic pain, lifestyle, MBSR

Being Comfortable With the Uncomfortable

When I was younger, I had no problem making a fool of myself to make others laugh. In fact- I enjoyed it! There is something sincerely satisfying about hearing another person laugh from their belly or to see them smile from ear to ear. I used to say “laughter is a great medicine- and luckily it’s contagious”, but then covid came and some found that to be distasteful. However, it is still true.

I am incredibly proud to say that I have just completed an 8 week MBSR course through http://www.palousemindfulness.com and I feel fresh. For those who do not know, MBSR stands for Mindful Based Stress Reduction and it is something that should be taught in elementary schools, in my opinion. The materials and practices through this course were truly mind opening and transformative for me. And it’s FREE!

During these 8 weeks, I went through a transition and decided to put myself first in my mind. Instead of focusing on the joy of everyone else first and foremost. I learned self compassion, loving kindness and how to be comfortable with the uncomfortable. These all might not sound like admiral qualities- but I promise they are.

One of the videos said something along the lines of. “Think of it like a work out. You go to the gym, you push your muscles, you eat right and gradually- you build those muscles. Your brain is one of your greatest muscles- controlling your entire body and well being at once- why not give it the same, nurturing work out? It takes time- but you will notice the results” ❤ Something along those lines. It all takes a little bit of time, but practice makes perfect and your brain deserves the love after dealing with our racing thoughts and movies in our minds ❤

Week 5 was when I really woke up. It was about turning towards pain and difficult emotions- a subject I thought I was well versed in due to CRPS and my other chronic pain conditions. I’m on the right track, that’s for sure. But. In another one of these videos, they mentioned a girl who lived with chronic pain her whole life. She too thought she was well versed in this subject of dealing with pain and difficult emotions, until she reached this part. I wrote a note down while watching and it said “I’ve hated my pain, I’ve wished it away and begged for it to change. I wanted it to stop and tried to ignore it. But I never once said Hello to it.”

And THAT was when I realized I needed to change quite a few things about myself and my journey with CRPS- the highest rated pain on the McGill Pain Index (higher than childbirth, amputation of digit, fibromyalgia and everything else compared).

I spent a week saying Hello to my pain. I woke up every morning for 8 weeks, putting my hand on my heart to release some oxytocin, saying “Good Morning Kristen, I love you”. I have meditated 6 days a week for 8 weeks and I am ready to take these steps. No pun intended because I have a wicked swagger in my step from CRPS.

After week 5, I stepped out of my comfort zone and started to try to help myself get the medical support and attention I needed. Things here in Nova Scotia have been back to open and we are extending to other provinces now. I needed to jump into this now before, heaven forbid, a second wave of covid 19 closes everything down again.

I called the pain clinic I was being seen at and they’re still closed with my medical file with no estimated time on reopening, or even confirmation that they would be reopening eventually. I couldn’t let my situation continue to wait and possibly get worse. I’ve already been seen at all the other clinics here and they’re tried all they can. So I called the pain clinic in Cape Breton and they’re open and able to accept me as a patient once they receive me referral. The referral that was sent literally 5 minutes ago ❤

I can’t afford to go on the trip with my limited amount of hours worked, so I started a GoFundMe. I was so impressed that within 5 days of me sharing it with my family and friends, I raised $610 of my $600 goal to help with the stay and travel costs. Turns out GoFundMe takes a fee, but I officially have enough for my airbnb or room. I still have a lot of money to make up for gas, food and my week of missed pay, but I’m getting there ❤ Here is the link in case any of you are able or interested in helping:

https://www.gofundme.com/f/KristenneedstotravelforCRPStreatment

I’m growing, I’m learning and “I’m going through changes”, but it’s all leading to wonderful things ❤

Be Kind To Your Mind and to one another,

Kristen ‘Sparkle’

@ConquerCRPS on social media and Gmail

blogging, challenge, chronic pain, lifestyle

Taking the Step for Myself

After my 365 day blog challenge and 50dayswithCRPS project, I felt sort of lost without writing a blog entry at least once a week. Shortly afterwards, I was advised to cancel the 3rd Annual Walk to Conquer CRPS due to the covid-19 pandemic. I sort of lost myself for a minute.

My pain became more dominant without these positive projects to work on and my mind became consumed with it. My actions and reactions were tainted with panic or worry trying to scramble for a purpose other than struggling. I was a mess.

I forgot to remind myself that everything happens for a reason. Sometimes for multiple reasons. Most importantly though:

I forgot to be kind to my mind.

As I was laying on the couch one day, I caught myself wrapped in a whirlwind of emotions regarding all of the defeat. ‘I can’t do this, I don’t have that, this is wrong with me and I wish I could do that.’- was all I could think. Something inside me sparked and I suddenly felt empowered to switch my thinking and lifestyle around the best I could.

There was no better time than now.

I opened up my laptop after wiping my tears and immediately jumped into week one materials for a Stress Reduction course that I was familiar with. In 2018, I had started this course and was only able to make it until the 3rd week before I admitted defeat. It seems I still had life lessons to learn before I could properly understand the importance of this training, and nothing about this course is easy.

On Tuesday, I will be starting my second last week and words cannot express how clear I feel. I’m very proud of my self discipline, self acceptance and for every step that has lead me to this point. I should qualify for my certificate by August 11 ❤

Through this journey, I’ve decided to put myself forward for once in awhile. I am stepping out of my comfort zone and trying to get myself medical support again, but I need help. I’m going to try to take steps for myself to Conquer CRPS.

I have an appointment next week to get a referral to send me back to Cape Breton with a CRPS specialist. IF I can raise the funds needed for a week stay, gas money (or bus ticket) and food for while I am there. It would take every penny of me working everyday (less than 2.5 hour shifts due to this CRPS) for 2 months to make the money I would need for the trip. So I uncomfortably made a GoFundMe Page.

Normally, I am spending this time of year raising funds for a team of doctors in Montreal that are testing a new CRPS treatment. Covid prevented that from happening this year. Which gave me time to love and nurture myself. I need help getting to where I need to be so I can take the next steps towards helping myself and others ❤

https://www.gofundme.com/f/KristenneedstotravelforCRPStreatment

I hopefully won’t have to share that link often ❤ I will try to write more often once my course is finished and I look forward to having positive news to share ❤

Be kind to your mind and be kind to one another ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

blogging, chronic pain, CRPS, inspiration, lifestyle

New Thinking

2020 is more than halfway through and so far it looks nothing like 2019, or anything any of us have seen before (at once).

The world around us changes, but the circumstances and limitations my body already had set for me, and others like me, remain the same. I caught myself slipping there a few weeks ago into the easier thoughts of depression and hopelessness. The days were too long and I couldn’t sleep enough, always being tired. I was upset with everything and jumping to hopeful conclusions for problems that were out of my control.

It sucked.

So, I decided to start doing things a little differently. I took a step back from projects I was working on and took a step in front of the mirror. Literally. I looked at what CRPS (Complex Regional Pain Syndrome) has done to me so far, by 32 years old, and I looked into my own eyes.

“What the hell have I let happen?” I thought to myself.

I closed my eyes and took 3 deep breaths. I knew things needed to change.. just like they were changing around me.

CRPS sucks, I can’t say it enough and I can’t find a more glorified way of saying it. It SUCKS the life out of patients. It SUCKS personality out of patients. It SUCKS motivation and it SUCKS inspiration. It SUCKS and leaves us drained, in a lot of pain. Highest pain recorded on the McGill Pain Index in fact. It Sucks.

That won’t change.

But my attitude towards it could use a few modifications.

Chronic pain in general has taught me of my own personal strength. My ability to get up, keep going and keep trying. I am stronger than I look and stronger than I give myself credit for.

Chronic pain inspired me to tap into my kindness and compassion for others- but also for myself. I know what it feels like to be alone, in pain and without answers- I don’t wish this on anyone and want to help everyone I meet. The world needs more positive vibrations and when you have something sucking all of that from you, it’s difficult to emit such a frequency unless you work on it.

Chronic pain taught me what is truly possible if you put your mind to it. It can consume, abuse and hurt you, OR it can help you rise above it all and give you strength to help you do the impossible.

One day at a time, I’m learning, I’m growing and I’m trying. I want to help myself and help others increase the quality of their lives, in small steps. Chronic pain and mental health can be difficult to balance, so I want to thank you all for following me along my journey so far and for any donations my followers have made towards my paypal account. You are all appreciated and help me continue this project.

I originally started this blog after my first pain specialist treated me for CRPS for a year and then had to wish me luck as a patient and person because there was nothing more he could try. I started with the intent of releasing negative emotions to make space for the positive and to inspire others to try to smile- no matter what is going on. CRPS has an awful nickname that I try to not mention, “Suicide Disease”. I’m trying to change that to “Made for Warriors”. I’ll get to where I need to be when I need to be there and have already come so far ❤

Be kind to your mind and be kind to one another ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

blogging, chronic pain, CRPS, hope, lifestyle

Catching up

It has been some time since I’ve written and I apologize for that. It seems that a little time was needed for myself to absorb and accept everything that is going on. My own life continues to challenge me, as the world around me rumbles with change.

I just have to mention: if I could walk properly- I’d be with all of you peaceful protesters and I wish there were more I could do from my position.

That’s the very part of everything that has been hurting me the most lately. There’s not much that I can do about anything these days except try to get through the day and onto the next.

I’m stuck.

That’s not like me. I usually “Adapt. Improvise. Overcome”, but these days- I just wish. I wish I could do these grand things to help others and myself. I wish I could make the world a better place in my small ways. I wish I could Sparkle and shine without a struggle because I know things will be ok. Instead of just wishing.

It has bee difficult for me to feel stuck. Especially this time of year. I’m supposed to be organizing the 3rd Annual Walk to Conquer CRPS- but again, I’m just wishing. Things stand in the way to prevent me from accomplishing anything these days. I won’t elaborate or dwell any further.

I am impressed with myself for how I am handling my pain these days though. Living with CRPS- Complex Regional Pain Syndrome, can make every minute a struggle. It truly does. But I’ve been working with my mind and natural remedies to simmer down how much the pain can consume me, or get in my way. I think when I am triggered, the pain is more intense than ever, because of the stressful and changing conditions we are all going through- in addition to my own. But I can calm it down and adjust my current situation for comfort easier than before. Perhaps because I have more time to work on myself and have less struggles getting to work now that my journey is to my basement.

I am trying to be as kind to my mind as possible and not accept defeat in defeating times. One day and one step at a time, I’ll get to where I need to be.

Short and sweet, but at least it was something. I will be back to writing soon.

Take care of yourself, be kind to your mind and one another. We are stronger together ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

I CANNOT RESPOND OR CHECK COMMENTS ON COMPLEXTRUTHS SO PLEASE EMAIL ME CONQUERCRPS@GMAIL.COM–

blogging, chronic pain, CRPS, inspiration, lifestyle

Change of plans

The sun is shining, birds are singing and Nova Scotia is expected to reach double digit temperatures today. It’s going to be a great day.

I feel it’s a good time to sit for a few minutes and update everyone on what has been going on. There has been a change of plans and it took me awhile to accept and adapt. But here I am, ready to take the next step.

For 2 years, I spent most of my free time brainstorming and organizing the Walk to Conquer CRPS and our network of Warriors. This August was supposed to be the 3rd annual event and it was to be on my 33rd birthday. I had big plans to celebrate this with 3 different fundraisers throughout this year to help our mission.

But. As you all know, covid-19 has created more problems than I’d like to admit.

Unfortunately, the 3rd Annual Walk to Conquer CRPS is cancelled due to the current situation we are in.

Which hurts my Sparkle a wee bit.

I’m looking for other ways to inspire hope, help and awareness to CRPS- Complex Regional Pain Syndrome and it’s warriors. The fundraising usually goes to a medical team in Montreal that have been testing a new CRPS treatment, but even that will be different this year.

Do I have any artists or musicians as followers interested in assisting with a small project? email conquercrps@gmail.com if so.

I’m still working from my basement, warmer days will help me hopefully increase my hours. I haven’t seen my step daughters in months, but I finally will have them here next weekend and I am more than thrilled. My pain has been overwhelming as my stress levels increase, but I know after years of living with it, the more I pay attention to it- the worse it will get.

One of my dearest friends and fellow warrior sent me a video the other day that shocked me and I want to share it here with you. I understand they are actors, but the portrayal is amazing. The story of her remission is even more miraculous. This is what life with CRPS/RSD is like. When I say I am constantly battling myself to be ok with the pain, I’m not messing around. I’m just kind about it, because of my sparkle or something. CRPS has had many names over the years, which has caused a lot of confusion. Even in this clip, it is referred to as RSD- Reflex Sympathetic Dystrophy, but the name was changed in 1995 to CRPS- Complex Regional Pain Syndrome… or ‘the suicide disease’

Skip to 28 minutes on the link below if you are interested.

https://www.youtube.com/watch?v=yNKJqeWlTqA&app=desktop

With that in mind, I have a lot of work to do. Today will be a good day and we will still find a way to Conquer CRPS. ❤

We are all in this together and we are Stronger than ever together ❤

HUGE SHOUT OUT AND THANK YOU TO ALL POLICE OFFICERS, EMERGENCY RESPONDERS, FIRE DEPARTMENTS, NURSES, DOCTORS, CLEANERS AND EVERYONE ELSE WORKING. THERE IS A REASON YOU ARE STILL WORKING AND WE ARE ALL MORE THAN THANKFUL FOR YOU ❤ THANK YOU TO EVERYONE FOR BEING PATIENT AND DOING YOUR PART. ❤

“I fight enough invisible illnesses- please stay home so I don’t have to fight anymore”

Be Kind to Your Mind ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

I CANNOT RESPOND OR CHECK COMMENTS ON COMPLEXTRUTHS SO PLEASE EMAIL ME CONQUERCRPS@GMAIL.COM–

#UnbendableSpoons #StrongerTogether #CRPSAwareness #CRPSWarrior #ConquerCRPS #FibromyalgiaFighter #FightChronicPain #FightCRPS with #love #peace #happiness = #success and #peaceofmind #youarenotalone #wegotthis #StayStrong #StayHopeful #BeKindToYourMind

blogging, chronic pain, CRPS, inspiration, lifestyle

Living with an invisible illness- while hiding from another

I have not felt like myself in awhile, that’s no secret. Once I feel slightly adjusted to one change, another dramatic event happens in Nova Scotia to pull at the heart strings and mix my emotion pot up. It has been difficult, but here we are: Stronger than ever together.

One thing that has remained at the front of my mind: I want to be the change that I wish to see in the world.

Although my limitations are growing and reality becomes overwhelming at times, I want to inspire hope, awareness, love and support to those who need it. This is what I’ve been doing for 3 years in my little ways, I should be able to now when it’s most needed.

It seems I’ve been needing those things myself lately though. So it’s been difficult to inspire a spark without a sparkle. My followers hopefully get that ❤

So, I would like to break something down quickly for anyone who might relate to what I’m going through.

I’ve lived with invisible illnesses for almost 13 years now. It started out with a chronic pain condition called Fibromyalgia. Fibro is rated 28 out of 50 on the McGill Pain Index, created at McGill University. It felt like my entire body was always sore and extremely uncomfortable. If I took a hot bath to relax, I’d have to put a towel underneath me to absorb the chill from the porcelain tub. It took me awhile to adjust to those pain levels.

I did not know at the time that Fibromyalgia not only caused wide spread pain, but it also had it’s affect on your nervous systems. As an example of the many symptoms that come from a chronic pain condition like that is: ‘Fibro Fog’. It’s a common term used to explain the foggyness in our thinking sometimes- not because we’re not intelligent- but because our nervous systems have sight differences in the way they work.

3 years ago, I was diagnosed with CRPS- Complex Regional Pain Syndrome. Nicknamed the ‘Suicide Disease’ by doctors and some patients. CRPS is rated 42 out of 50 on the McGill Pain Index- higher than amputation of digit, non terminal cancer, child birth and everything else on the index. This pain can come as shocks from the wind or a hug from Allodynia or Hyperalgesia (can’t remember which one, fibro fog), or it can sit at a constant hum of that intense pain.

In addition to the pain, every nervous system in the body is affected. Our fight or flight modes are in overdrive, our short term memory is not the best, our emotional regulation needs to be focused on or it can get easily derailed (As my followers have seen.) 66% of patients in Canada need to see 3 or more doctors with the same symptoms (either swollen, atrophied, discolored, different temperature than opposite limb, etc) before a proper diagnosis and by that time, the damage is usually permanent and progressive. Without a cure, medical support or knowledge, 4 out of 5 patients decide to end their lives as their treatment. Hence, the nickname.

Which is awful.

This is why I wanted to be the change that I wish to see in the world.

Since then, I’ve been given the nickname ‘Kristen Sparkle’ and I try to truly shine in any way I can. Even though, I’m living with debilitating pain taking over my dominant arm and legs. I also have had no medical support or successful treatment and if I were to start now on a cliff-note version of my last 3 years medically and financially (how the two connect? only chronic pain patients or those with other invisible illnesses understand), we’d be here all day. So I won’t.

So I organized the 1st and 2nd Annual Walk to Conquer CRPS and raised funds for a medical team in Montreal that are testing a new CRPS treatment. Hopefully the 3rd Annual event will be this August. I also try to make positive quote pictures to share on instagram and Facebook (@ConquerCRPS) I wrote a 365 day blog challenge- Spoonie Edition, right here on WordPress and Complex Truths, finishing out the last 50 days with #50dayswithCRPS. I started more fundraisers for the medical team in Montreal with the 3s to change CRPS and an Art Auction that was supposed to be held in April. I offer one on one support emails and had a monthly skype support group going before this Covid-19 stuff took over everything.

I try to help.

But for the past little while, I was the one who was needing the positive quotes and words. I was the one who needed a virtual hug and couldn’t handle the symptoms of my conditions or limitations and challenges.

I woke up this morning to a little voice telling me to be nice to myself today. Give myself credit for the little things I have done. I have to overcome many obstacles and limitations to accomplish what I do, so for that I am proud.

So I will end on a positive thought:

My father and I have been trying to find healing benefits from nature. I’m proud to say I am on my 30th day of a special tincture we made (no, it’s not marijuana or psychedlic). On a good day (with no moisture in the air, decent sleep and limited stress), my fibro pains are simmered down. CRPS is still dominant, but if one pain is limited- I feel a benefit. The tincture tastes delicious and I cannot believe it works. I’ve been working on a write up about it to share with the world, hopefully soon 🙂

May the Fourth be with each and every one of you today. Happy Star Wars Day from one Hippie with high hopes to the world ❤

We are all in this together and we are Stronger than ever together ❤

HUGE SHOUT OUT AND THANK YOU TO ALL POLICE OFFICERS, EMERGENCY RESPONDERS, FIRE DEPARTMENTS, NURSES, DOCTORS, CLEANERS AND EVERYONE ELSE WORKING. THERE IS A REASON YOU ARE STILL WORKING AND WE ARE ALL MORE THAN THANKFUL FOR YOU ❤ THANK YOU TO EVERYONE FOR BEING PATIENT AND DOING YOUR PART. ❤

“I fight enough invisible illnesses- please stay home so I don’t have to fight anymore”

Be Kind to Your Mind ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

I CANNOT RESPOND OR CHECK COMMENTS ON COMPLEXTRUTHS SO PLEASE EMAIL ME CONQUERCRPS@GMAIL.COM–

#UnbendableSpoons #StrongerTogether #CRPSAwareness #CRPSWarrior #ConquerCRPS #FibromyalgiaFighter #FightChronicPain #FightCRPS with #love #peace #happiness = #success and #peaceofmind #youarenotalone #wegotthis #StayStrong #StayHopeful #BeKindToYourMind

blogging, chronic pain, CRPS, hope, Life

Too much, still adjusting

Where I come from, the people are kind and compassionate. We are the kind of people who apologize if we are in someones way and we compliment strangers if we like their shirts. We wish almost everyone we see a “Good Morning” or “Good Afternoon” and we help those who need it, even those who don’t.

I’m proud to be Nova Scotian.

But these past few weeks have been difficult. I have felt myself losing my Sparkle and needing to refocus for a while after the covid-19 pandemic started, I’m still having troubles. Once I finally began to feel like myself again with these new limitations from yet another invisible illness, my community became filled with terror, anger and sheer frustration. The Nova Scotia shootings will never be forgotten and the entire province still has heavy hearts for all of those affected.

After a week of really trying to “fake it until I make it” with happiness and feeling okay, I decided it was time to leave my house again. I went for a quick drive with my husband while he went to the marijuana store for me and then to the convenience store by my house. Lately, there has been a line up outside of this store, but not on Friday. The parking lot was nearly empty and he was able to pick up my medicine in less than 5 minutes. Once we got to my neighborhood, the convenience store had a sign on the door “Go home, active shooter in neighborhood.”

My neighborhood???

Another shooter?!?

Once I got home and was able to listen to the radio, contacted my mother and my sister, I learned that the shooter in my area was a false alarm and the police were investigating 2 other situations in the community of my youngest step daughter.

Also false alarms.

Thank goodness they were false alarms, but it is still way to much for me to be comfortable with. Way too close to home.

The whole world needs some love. The whole world needs a germ free hug. We all need to recognize that WE ARE IN THIS TOGETHER and we are STRONGER TOGETHER.

Sunday evening, I needed to find something to smile about. Sincerely, my heart needed it. So, I turned on my rainbow lights and Canadian Flag projector outside to light up my window paintings and we went for a short drive at night time to see the support in the community. There were so many hearts and Nova Scotia flags lit up. Along with so many inspiring signs and paintings on windows and so many opportunities to feel thankful instead of nervous. It was beautiful.

Nova Scotia, you are amazing. we are stronger together and we will get through this.

My blog and my life for the past 3 years have been about raising awareness, inspiration and support for a less common invisible illness. CRPS- Complex Regional Pain Syndrome. It is the highest rated pain recorded on the McGill Pain Index (Higher than childbirth, non terminal cancer, amputation of digit and everything else on the index). There is no cure either. I’m sorry I have not been able to focus on this for the past few entries, I hope it is understandable.

On a positive note,

The 3rd Annual Walk to Conquer CRPS will be here in Halifax on August 29, 2020 if we are able to join together at Point Pleasant Park as planned. If not, I will be learning how to make this all virtual so we can still get together online and raise some smiles, support and awareness. We usually raise funds to go towards medical research of a new CRPS treatment, but I am unsure if that is on hold or not with the doctor and his team. One day and one step at a time, we will get to these better days ahead that I keep mentioning ❤

We are all in this together and we are Stronger than ever together ❤

HUGE SHOUT OUT AND THANK YOU TO ALL POLICE OFFICERS, EMERGENCY RESPONDERS, FIRE DEPARTMENTS, NURSES, DOCTORS, CLEANERS AND EVERYONE ELSE WORKING. THERE IS A REASON YOU ARE STILL WORKING AND WE ARE ALL MORE THAN THANKFUL FOR YOU ❤ THANK YOU TO EVERYONE FOR BEING PATIENT AND DOING YOUR PART. ❤

“I fight enough invisible illnesses- please stay home so I don’t have to fight anymore”

Be Kind to Your Mind ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

I CANNOT RESPOND OR CHECK COMMENTS ON COMPLEXTRUTHS SO PLEASE EMAIL ME CONQUERCRPS@GMAIL.COM–

#UnbendableSpoons #StrongerTogether #CRPSAwareness #CRPSWarrior #ConquerCRPS #FibromyalgiaFighter #FightChronicPain #FightCRPS with #love #peace #happiness = #success and #peaceofmind #youarenotalone #wegotthis #StayStrong #StayHopeful #BeKindToYourMind

blogging, chronic pain, CRPS, hope, lifestyle

Love from Nova Scotia

The past few weeks and weekends have been different for most of us. It can be hard on the bodies, hard on the mind and heavy on the heart, for many reasons. I decided to spend the weekend cleaning my house, trying to make space for some positive energy.

I truly enjoyed the One World: Together at home program. I must admit, I cried for a lot of it, but it was a wonderful show.

I made the decision to NOT check the news yesterday morning. For the first time in over a month now. I wanted to continue making space for positive energy in my home and I wanted to feel refreshed for this week ahead.

Around 4:30PM, I found out that the world changed dramatically outside my home over the past 24 hours. Nova Scotia, was going through one of the worst weekends in our history.

Not only are our covid-19 numbers and deaths rising, but we lost over 10 Nova Scotians yesterday. Including a female RCMP officer, with another officer in hospital. I write ‘over 10 Nova Scotians’ because unfortunately, they still don’t know how many crime scenes there are and some of the scenes are that confusing… they’re unsure of the victim count yet. The suspect went across our province before the RCMP terminated his life.

This is NOT something I ever thought I would have to write about or live through, especially during the covid-19 pandemic. We are already making history, why is my home town now know as the location for the “worst mass shooting in Canadian history”?

As an empath, or whatever it is that I feel, there is a extremely heavy wave of sadness and anger in the air. It hurts.

Now, more then ever- I am trying to find ways to be positive and inspire others to be kind to their minds. be patient and be hopeful. We have lost too many lives this weekend, my hippie heart hurts. My thoughts and heart goes out to all of the victims family and friends, also to the family and friends to those who lost someone to covid-19.

May today be a better day. May we all be kind and mindful of one another. Please, please, please- Be kind to your mind ❤

One day at a time, we will get through this together.

HUGE SHOUT OUT AND THANK YOU TO ALL POLICE OFFICERS, EMERGENCY RESPONDERS, FIRE DEPARTMENTS, NURSES, DOCTORS, CLEANERS AND EVERYONE ELSE WORKING. THERE IS A REASON YOU ARE STILL WORKING AND WE ARE ALL MORE THAN THANKFUL FOR YOU ❤ THANK YOU TO EVERYONE FOR BEING PATIENT AND DOING YOUR PART. ❤

“I fight enough invisible illnesses- please stay home so I don’t have to fight anymore”

Be Kind to Your Mind ❤

Positive thoughts,

-Kristen Sparkle

@ConquerCRPS on Instagram, Facebook and Gmail

https://www.swagbucks.com/refer/HippieRays If you want to make a little extra money from home for watching videos or taking surveys. It all adds up. I’ve made $700 in the past few years.

paypal.me/sewearthycreations My personal journey is increasingly difficult because of CRPS, but I continue to try to make the best of each day. All support is greatly appreciated ❤

I CANNOT RESPOND OR CHECK COMMENTS ON COMPLEXTRUTHS SO PLEASE EMAIL ME CONQUERCRPS@GMAIL.COM–

#UnbendableSpoons #CRPSAwareness #CRPSWarrior #ConquerCRPS #FibromyalgiaFighter #FightChronicPain #FightCRPS with #love #peace #happiness = #success and #peaceofmind #youarenotalone #wegotthis