My Story of Pain to My Story of Hope… now.

Have you ever had someone tell you you’re faking it when you’re in extreme pain, and people don’t believe you? That was me for over 15 years.

Let’s start at the very beginning… welcome to me at around age 12 to 13 years old. I went to a summer camp with fellow visually impaired and blind people, and one of the staff asked a fellow camper to guide me, since they had their hands full. Firstly, that was a bad idea. Why? I ended up spraining my left ankle by stepping into a pot hole the wrong way.

At that moment, I thought that this wouldn’t be long, and I’d be ok to come back the following summer. No. In the spring of the next year, or around then, I started getting pains in my left knee. I thought that was rather strange, but my physiotherapist at the time was gentle and kept an eye on it. That wasn’t gonna last long though. No one, not even my own family believed me when I mentioned my knee pain that wouldn’t go away. What I didn’t know then, and what I know now, is people with my pain condition, which I’ll explain in a little while, don’t get diagnosed quickly, because doctors literally have to check everything else off the list.

So, as time progressed, and the physiotherapist I had pushed me beyond what I could do, my knee got progressively worse… and even still, people thought I was faking it, even though I was in tears more than once within a school week. Something’s wrong with that if you ask me.

By the time I was about 17, I was using a wheelchair my mother through adoption got me… it didn’t really fit me, and I still had people at school telling me more than once I was faking it.

Let me bring up a particular situation that no one wanted to understand… because it was easier for me, I ended up participating in rhythmic gymnastics… and staff told me that if I was to perform in the show, I couldn’t use my wheelchair to get around the day of… it would’ve been easier on my knee if I could do that, but no… no one understood.

All throughout high school and elementary school, I had no medications to help with the symptoms I was dealing with… that, however, changed in 2011.

Just after my birthday in 2011, I ended up visiting someone, and ended up having to stay there longer, due to my knee. When I went into hospital, after I was convinced to go, I was put on Baclofen… that was a really good start. It definitely helped with my Cerebral Palsy, and in turn helped with my pain, to an extent. I was also sent with Tramadol… at the time, that worked well.

Welcome to 2012… a major turn for the worse for my knee… went back into hospital… though doctors didn’t know what was going on, they could tell I was in pain. After an MRI that showed nothing of concern, I was sent to the Rehabilitation Centre at the beginning of February 2012.

At this point, I couldn’t walk at all, due to my knee completely quitting, and my right leg quit, due to the fact that it was overworked. At the rehab centre, since the pain was too severe, I ended up using what was called a therapy roll. What that is basically, it’s a roll that goes under the knees so I can do leg exercises. So helpful! During the time I couldn’t walk at all, I also got to use what is called a transfer board. I even got to make my own to take with me when I left the Rehab Centre.

Therapy Roll Transfer Board

I also got to go into the pool there and do some walking between parallel bars… that was also extremely helpful… even if I still couldn’t walk on land.

Because I couldn’t’ go back to my home address, even though I couldn’t call it home, I worked with a social worker at the Rehab Centre, and we found a place that I would consider extremely temporary, and a place I’d rather not be.

At the end of February, I moved into a group home type situation until I could find a home I could live in. Finally by the end of my rehab stay though, I could use my right leg to pivot again… yay! So helpful!!

Now, because doctors still couldn’t figure my knee out, I was given narcotics to help with the pain, which did help, but I would’ve rather do without them.

Sometime between 2014 and 2015 though, I finally got my diagnosis, and my friend was right. What do I have, you ask? I have Complex Regional Pain Syndrome. In a nutshell, it’s an injury that heals, but the brain tells you that there is still pain there. That’s when I knew someone listened, but let me make this clear, it is literally a catch-all diagnosis.

When you read this, you may think how sad this is for me, but really, though hard, the doctor’s refusal to listen and understand gave me the determination to figure out how I could get around my childhood home, when my wheelchair couldn’t be in the house… lots of scooting along, but I got to where I needed to. You may think that it isn’t fair for me to have to have done things that way, and you’re right… but if it wasn’t for that, I wouldn’t have the tips and tricks I do have now, thanks to it.

From mid 2016 onward, I’ve been on a neuropathic medication called Lyrica which has helped my knee tremendously! All thanks to a doctor who listens.

Now, here’s some advice for all who is experiencing chronic pain, you’re not alone, and if a doctor doesn’t understand, keep going to a different one until you get the diagnosis you need. When you say you’re in pain, it’s real, and no one can tell you otherwise. Keep that in mind as you face and embrace the battle, and eventually be able to coexist with chronic pain!

You’re not alone!

Also, here are some more details about Complex Regional Pain Syndrome.

Why Am I Still Here? I Have to Be… Unfortunately.

Written on November 18, 2016


So, it’s been awhile since I’ve actually been back at home, and the day I returned, I found a booklet on the ground in front of my door. The only reason I actually saw it was because it was put there, and the text on the front page was actually in a size I could read… for once, and only the front page.

What was this about? That evening there was a mandatory AGM… AKA popularity contest, if you really think about it. Why do I say this? Let me attempt to explain.

Every year they have a vote for who gets on the board. Twice, within the time I’ve been here, I’ve attempted to run for it, and each time not even really getting through. I’m truly starting to think; why do I bother?

Also, why does a co-op have a site that is down? That’s not a good look for them. I firstly came here because I loved the atmosphere, but now I’m starting to wonder if I just came here out of disparity.

A conclusion to all this mess, before I ramble on and on about it, I am not on the board, nor do I have material for the meetings in the format I need it, or any other material for that matter. So, why did I exactly waste my evening? Oh yeah, mandatory. Officially, not impressed… at all, actually!! Four plus years later, and people are still dragging their feet.


I am officially done!

Uncooperative Co-Op!

So, here we go again… round… I dunno.

I still can’t believe how sucky the management is for this uncooperative… yes, Glenn Haddrell, I’m talking to you. I’ve already written so many blog posts, and emails about this, and to them. I’m *still* ranting. Uncooperative, I wonder why.

Let’s go back to when I first moved in. You people wanted me to sign a contract, yet, I never got the contract, and not even in an accessible format. That’s only *one* issue. Only one… but there is more… much more.

Let’s move on… issue number two… some of the tiles in my kitchen are raising, and are becoming unsafe. If it weren’t for the fact I had company here, I totally would have fallen flat on my face… literally. Just for reference, here is a picture of how unsafe this is.

Raised Tiles

That issue has been an issue for ages, and I have emailed them, and sent in paper copies of work order forms. Did they listen yet? Nope. Thanks Glenn Haddrell… NOT!!!

Second maintenance issue… I have had a broken washing machine for two weeks, and as a result of that, my Personal Support Worker, (PSW), has to wash the things I need by hand. This can be a very tedious process. Yes, Glenn Haddrell gave me a key to the laundry room, but I really can’t get there safely… really, un-co-op? Really? Uh huh… apparently.

All this crap makes me so angry, beyond belief. I ended up writing an email to an organization to tell them of these issues. Hoping to receive an email from them. Let’s see what happens.

As my anger somewhat continues to roll off me… thanks, Uncooperative, Co-Op!

This rant is done. Spread the word!

Take Two of These and Call Me Three Weeks Later

Dear Doctor;

Back in June, I came into hospital for my shoulder, my left shoulder at that. What was the only thing you did? Only pursued to X-Ray my left shoulder and what did you find? Give me an N… give me an O… give me a T… give me an H… give me an I… N… G!!! What does that spell? NOTHING11 What did you tell me? “You’re seeing your family doctor in a few days, so we’ll get the pain under control and send you home.” What did I tell you? “Sure… discharge me. I’ll be back with this issue again.

Wasn’t I right?

Most of you know by now that I also have a knee issue, thanks to CRPS, (Complex Regional Pain Syndrome.) My knee has days where it can flare up to the point that I am immobile, and need to use my wheelchair. Well, this was one of those days. The night prior I went to Tim Hortons via the regular bus system, which meant my shoulder was aggravated again, due to overuse. I had spoken to my OT the next day about how to go about getting things started for a power wheelchair, which meant I had to show her why I was not able to push the wheelchair I currently have.

That’s what started this all…

Fast forward to later that night, into the next morning. My knee had really gotten worse, and so did my shoulder. My shoulder got so bad that I felt unsafe in my own home… my own, wheelchair accessible home at that.

Called 911… back to hospital again for the exact same issue as when I went in June… really? Didn’t I say something like this would happen again? Why yes, I did.

Again, they took another X-Ray when the first one showed that there was nothing wrong, as far as the X-Ray goes. Luckily, this time, however, doctor didn’t stop there. Even though the ER doctor thought this was just another pain flare up.

Again, I was admitted to hospital… getting sick of the four walled confines of a hospital floor by now, regardless of what the outcome was. Since they took a step further and did an ultrasound, they saw there was inflammation there. One step further than in June… I’ll take it!

The OT in hospital saw me the morning after I was moved up to A5. I should have remembered that they were gonna start right away, with no time to adjust and figure out things. Luckily, my knee was playing a bit mored nice that day, but still not 100%.

Week 1

Getting pain under control.

Besides getting me to get up into the chair every day, they also managed my pain by giving me ” around the clock, every four hours.

Waiting for approvals.

Once pain was manageable, the team was starting to put together the next steps for me. I remember having to explain to them that the functionality of my shoulder was the issue, and not the pain. The CCAC person I had spoken to without the first few days of me being in hospital had basically said that I probably wouldn’t get into convalescent care, due to pain possibly not improving. It. Dr. Zang, under Dr. Kouling’s team tried to organize plans for a power wheelchair, as well as actually applying for convalescent care.

Welcome to frustration times frustration. The only reason I was taking up a bed in hospital was the simple fact of the waiting game.

Week 2

Still waiting…

Was still waiting on the things mentioned at the end of week one, and still heard no update on both fronts.

Another care coordinator from CCAC had to come and fill out a portion of the convalescent application, which no one else told me about. Which, of course added to the everlasting waiting game.

It’s time for a never-ending game of Musical Doctors!

Ever had to endure horrible waiting music for you to get through to someone? That’s how this process literally was. It started with when the residents on my team switched. Dr. Zang told me on that Monday that it was his last day as my resident doctor. He told me a new resident doctor would be starting the next day.

One resident came the next day to introduce herself as one of the new residents under Dr. Kouling. Her name was Dr. Brown. She seemed all right. To my surprise though, by Friday, I apparently had the same resident doctor as I saw in June. Dr. Lianari switched from Internal medicine, to Family Medicine. I had told her that I would be back in hospital again, due to overuse of my left shoulder, and actually not properly diagnosing it. She *finally* understood.

During that whole game of Musical Doctors, I felt like I had to explain myself over and again, with no one actually telling me anything useful. Near the end of my hospital stay, the chief doctor, Dr. Kouling was switched out by a doctor that *he* apparently taught. I can tell you, as much as it was harsh, Dr. LeClaire, the new chief doctor schooled *his* teacher.

When Dr. LeClaire saw me, he had told me that all the things  that I was awaiting approval on, they couldn’t be done in hospital, and these same things couldn’t be done in convalescent care either, like Dr. Kouling had said, would. I had thought all along that there wasn’t much they *could* do in hospital, except for the pain management part. Dr. LeClaire and Karine told me that the things I needed for home couldn’t be put in place in hospital, such as my power wheelchair. None of the OT’s in hospital have their ADP certification for that reason. They are there to give you ideas, so then you can implement them once at home.

So, key question, why was I still there?

That was Dr. LeClaire’s exact question. Dr. Not-So-Kouling was the one to suggest downplaying what I could do, and being optimistic, whereas Dr. LeClaire was the one who was being realistic.

Final steps before discharge.

  • Dr. LeClaire strongly advised me to get a steroid injection for my shoulder, and yes, I took it. There wasn’t a choice there.
  • Called my OT out in the community to let her know I was being discharged. I also asked her to tell me what things need to be in place for my power wheelchair application once I got home.
  • Karine, the CCAC coordinator in hospital got my file reopened, and my services restarted with some in the evenings as well.

Discharge Day

Got everything organized the best I could before leaving the hospital. Lucky for me, I went straight from the hospital to my doctor’s appointment with Dr. Duong. I gave him the discharge papers for this hospitalization, and got my Hydromorphone re-prescribed.

Next steps

  • Keep calling my OT out in the community to get going on the process for power wheelchair
  • Double checking when my physiatrist appointment is, and confirming whom it is with so I can pass that on to my family doctor.

Dear Doctors:

When I come into the hospital for the second time and for the same issue, maybe you should’ve done your research the first time. Take note of that, ok? Was in hospital for almost three weeks for an issue that you doctors in June could have dealt with, and done research on in the five days I was there, back in June.

Do your research… that is all!

No love, your patient whom didn’t need to be there a second time, and for so long for the issue that wasn’t diagnosed in the first place.

Welcome to Seasonal Colds… Not!

I am sitting here waiting until Steven  brings my wheelchair to the place where I am at. Right now I am sitting at the Tim Hortons and blogging. .
Thanks to having very little sleep, due to a cold that decided to show itself, I only slept approximately three hours. What woke me up, you ask? My cough that makes me sound like a seal barking… ow!
Stupid me decided to walk to the bus today, instead of using my wheelchair. I think the hill I have to climb, plus my knee hurting after, plus my cold drained me.
Now that I have Buckley’s Nighttime pills, I “should” ha ve a better night’s sleep.
Colds really drain me.
That is all.

What Happened to Accessibility?

Let me start from the beginning on this one. I moved into my current home in 2012, and I’ve had issues with accessibility since I’ve moved here. Yes, the unit is accessible, but that’s the only thing that really is. I’m honestly so annoyed at this point.

When I first moved in, I had asked the co-op manager to send any memos, or important notices to me by email, as I am not able to see the print. You’d think by now they would get the point, and I’ve been living here for 3+ years.

This is where it all starts… not a happy camper. A few days ago, Steven went out to put something into the mullic, which is where we put our garbage. When he returned, he had noticed a notice on the ground outside my doorway. He had read it to me, luckily, but that’s beside the point.

The note had said that I had missed a mandatory co-op meeting on November 18th, and because I missed it, I would have to pay the $25 fine. Firstly, I had no idea there was even a meeting, all because the memo was left in my co-op’s memo box, and it was not emailed to me like it should’ve been.

Oh yes, and it also said on the notice that if I don’t pay the fine, I could be evicted from the home that is accessible to me. Well, accessible as in wheelchair accessible. When I first was told that the co-op manager had no problem in emailing the notices to me, so I would know what is going on. Although, that has never happened.

Do you, or don’t you know what accessibility is? I’m honestly getting tired of them not following through with what I have asked for, for years. Part of me wants to speak to the registry, and maybe find a different housing unit for me. Part of me doesn’t even think I should pay the fine, because  they are breaching accessibility, and making memos easy to access when visually impaired, or blind.

I am honestly not impressed! I wish they made accessibility laws more enforced in Canada, but that doesn’t seem to be the case. Which is why I’m not sure how to go about this, for the thousandth time it feels like, anyway.

No idea where to go from here. This isn’t right, and I shouldn’t be fined for something I had no idea about, because the memo was not in an accessible format for me , I had absolutely no idea. It is not someone else’s responsibility to read my memos, and anything that is in small print.

How on earth do I address this? Anyone who has advice for me, you are welcome to leave in the comments below… so stuck! So annoyed too!

All right, for now this rant is done! I’m so fed up!!!