2010 – The year of hell!!

For some reason this morning I don’t have any to the internet connection on the front step. Not sure why seeing as I’ve had it tons of times before, but this morning it seems to be overly stubborn. Just like everything else in my life. Well maybe that’s a good thing considering it’s making me write instead of browsing aimlessly at things I really don’t care about anyway.

What an exhausting year 2010 has been. This entire year has been one long string of crisis after crisis after crisis. I’ve been going through hell more than I could have ever expected, and I think it’s still far from over. But seeing as I always try to look on the bright side here’s a sample of the good. As long as there is strife and that strife is accompanied by determination then there are also possible solutions. This year I’ve found many goods in the bads’ and I’m so grateful for that ability. 

Let’s see if I can remember all the bad and then pull out the good.

In January, which seems not so long ago, I was involved in an MVA. I walked away seemingly unscathed, but when the pain hit a few days later, it hit hard. A rotator cuff injury got me started in Physio and as the treatments progressed everyone around me could see I was getting worse instead of better. The only thing that helped was massages. Oh…. How I miss those massages! Acupuncture…. No thanks. Not ever again! But massages? Anytime …….. See? There’s one lesson learned!

My right arm was always hurting and repeatedly felt like someone was trying to tear it out of its socket; I always awoke in the middle of the night with headaches that made me pace the room crying while wishing I could just rip my head off and die. It got to a point where I would walk into my bedroom, look at my bed and pillow suspiciously and beg “Please be kind to me tonight?” Bedtime became a time of terror and it had more to do with reality than dreams. Too this day I can’t sleep whole night without sleep medications. I ran out of meds once and tried to make it through the night without it; no such luck. Again my bed became a weapon of torture and the next morning I was back to step one of the beginning. I’ve tried to stay well stocked ever since. Another lesson learned…

Finally someone had the thought to request that the Insurance pay for MRI’s of the effected areas. Three weeks later I was in having an MRI. (Shocking considering it can take months to get an appointment through OHIP.) I must say I was surprised I got in so fast, but I was grateful. The shoulder MRI came back fine, the head MRI came back fine, but the cervical spine MRI wasn’t as lucky. They found a bulging disk and two Tarlov (Perineural) Cysts. And here’s where the learning really began!

First I had to ask myself, “What is a Tarlov, Perineural Cyst?” And then I wondered, “Could this be affecting me? Is this why I’m in so much pain?”

In 2006 I had gone back to school as a Mature Student to study Broadcast Journalism. I worked my ass off, lived and breathed the program and finally graduated two years later with High Honors and a 3.8 GPA. I’ve never been able to do much with the things I’ve learned, but there is one tool I gained that I make use of every single day; Research.

My Research Instructor may have been an ass, on the personality side, but he certainly knew his stuff, and knew even better how to pound Research into our heads. Back then I was merely tolerant of his rampages and insults, today I’m grateful for his never ending demands and the lessons he’d taught me. Today the tools he gave me are the ones I use the most.

When I finally got the results of the MRI, which I managed to get my hands on before I even got into see my Physician about them, I read and then researched. I signed onto to become a member of Straight Talk Tarlov Cysts; a user friendly, Yahoo chat site, where basically all they discussed were Tarlov Cysts. They talked about their symptoms; They chatted about the experiences they were living through and the effects the illness was having on their families and home lives. They talked about the impact these Cysts were having on their ability to earn and be self sufficient and they also talked about what helped, and what didn’t. 

This is where I began asking questions and began getting experienced answers. It was a great beginning. But oh so far from the end!

                

The Beauty of Canada…….. It’s not all bad.

Canada is a gloriously, wonderful place to live. I am so very grateful for the many things it has to offer its Citizens, of which I am proud to say I am one.

Over the years I’ve driven from one end of this Country to the other. I’ve laid on the sands of Long Beach, BC and watched the sunset over the Pacific Ocean. I grew up surrounded by the raw, unspoiled nature of Newfoundland where my passion for natural beauty began. I’ve seen some of the most amazingly beautiful places in our Country. I’ve tasted most of its multicultural, flavorful fare and gratefully experienced most of Canada’s natural pleasures. If you haven’t experienced this country yet then maybe that’s a vacation you should seriously consider. You’d be amazed by the splendor and simplicity our Nation offers within its borders. The possible experiences that lay before you are endless and the memories you could earn can comfort you throughout your life. My memories comfort me daily.

As my body betrays me, limiting my daily activities, I sit back and remember the places I’ve been and the things I’ve seen. I remember how I closed my eyes in that amazing moment in time, digesting all of the sounds and smells surrounding me, while my imagination developed a snap shot of that exact moment. Thank god for my gift of creativity; it gives me the power to envision my surroundings and relive the moment better than any photo ever could. 

I remember being able to walk without pain. I remember the feeling of climbing over wet, ocean sprayed rocks softly enclosed in layers of cushioning moss. I remember how strong I felt as my body moved to compensate for every angle, twist and turn; I remember doing it all without even a hint of fear. 

I can close my eyes and feel the soft decaying Newfoundland soil under my feet as I walked through the bush that surrounded my home. I remember the smell of the surrounding Atlantic Ocean every time I walked out my door and the freshness of the trees and earth after a light summer rain. I remember loving and valuing every moment and feeling the pride of knowing I am part of that land. No matter where I go in the world, I am and always will be a Newfoundlander, and a Canadian. Now all I can do is sit here, remember and write about it, bringing it all back to life in my head and my words. It’s a pleasure that gives me a way out of the painful, frustrating life I live now.

But I assure you, I have not and will not give up my dreams, or even the dream of the experiences I still hope to have in the future. I will always fight for the solutions to my illness that will provide the opportunity to get back to the things I love. While I wait I’ll just remember what I’ve been lucky enough to experience in my past and look forward to what is yet to come.

Why?

Every morning I wake up at around 6am and sit here wondering “What am I going to do today?” Everyday looms ahead of me like a black, empty, void. I have no idea of where I’m going, why I'm up so early and no idea of what to do to fill my day and challenge my mind.

I like to feel challenged, yes challenged, not frustrated. I enjoy learning and I miss the feeling of moving forward in my life. I know, I’m not going backwards, but I’m not going forward either. I feel as if I’m just…. here, not going anywhere.

I can’t work. Or at least I haven’t found anything that I can fit into so far. The way my illness works makes it a little difficult to make plans, commit to or promise anything. From one day to the next it’s all about how I’m feeling at the moment. Some days its migraines, the next it’s unbelievable nerve pain, then it could be complete, all over body pain. I can’t sit for long, some days not at all. I can’t stand for long, but again some days I can hardly stand at all. I can't use my arms in repetitive motion and I can't walk for long. So as I’m sure you can see by now, although maybe never really understand, it’s hard to move forward. 

I’ve tried pain medications, but Tylenol does nothing for me anymore, and I have a severe and nauseating reaction to Opiates. I have a Liver problem that limits the medications I can take so it’s kind of like a catch 22. 

I feel stuck within the limitations of my own body. So far no one, including my Physician has been able to come up with anything to make it any better, or to give me more freedom and flexibility. So I just sit here trying to fill my days with things I can do and this Blog will be one of them.

There is an extensive list of Canadian issues that has created many barriers to my ability to move forward. That’s why I’m doing this blog and trying to focus on those issues.

Introduction

September 14, 2010

What an experience this whole situation has been! I have learned more about human anatomy and physiology than I have ever wanted to know, all while hurting so much that half the time I felt I was a robot, rusting slowly as I moved through a wet and dense Newfoundland fog. 

I have seen miserable lawyers who couldn’t possibly crack a smile without payment. Talented lawyers who could really use some training in customer service skills and case management, then I have also seen a lawyer, one lawyer who knows how to play the legal game, even when the medical diagnosis that supports the case is as confusing as our laws themselves. This one Lawyer, the creative one with the sharp tongue motivated by years of experience, is the Lawyer I can proudly say is the one who chose to help me fight this confusing, but life saving, battle.

Life saving? Sounds so ominous! You would think this word would only apply to illnesses that would bring an end to a life. Well, as I have learned, there are many different ways to end a life and they do not all end with a coffin or an urn.

Life can easily be ended by just losing who you were and being unable to replace that loss with someone new that you can live with. That was my case, is my case. 

My body is sick. I am ill with a diagnosis that most Canadian medical doctors have never heard of, and the ones who have heard of it let their arrogance carry them into explanations that years of medical research could easily disprove. It’s kind of funny to think that during this journey I have taught some physicians, namely mine, more about this diagnosis than they ever thought they would need to know, or ever need to use again. At least I am happy to say, my Physician took the time to listen and learn, both with me and on her own. She cared enough to learn how to help me. This is more than I can say for my last Doctor. In my mind he’s more than half the reason I am here in this situation to start with. No, he didn’t make me sick, but he also didn’t care enough to help me figure out what was wrong in the first place.

So here I am, 40 years old, sick, unable to work while trying to fight insurance companies, the legal system, and the Ontario Provincial health care system to ensure I can turn 50 without having to be in a wheelchair or dead. 

If you were to see me on the street you’d probably look at me and think “she’s young and healthy”, and I do look fine. I look normal, just like you, but if you could see beneath the surface you’d probably cringe and think, “What the hell is that?” 

I saw my MRI the day it was done. Thanks to the wonderful world of Photoshop I was able to quickly drift through the images that at the time didn’t mean much to me. I’m no Neuroradiologist, but when I got to the image of the lower part of my spinal cord even I could tell there was something abnormal going on there. You couldn’t miss this weird shaped bubble that extended out of my spinal cord then drastically enlarge resembling grapes on a vine. Even the little cervical cysts stood out. For some reason, the little bubbles glowed white against the dark background. Shortly after the MRI’s were done I got the diagnosis of two small cervical Tarlov Cysts and one giant Tarlov Cyst filling my sacral canal and causing bone erosion. 

It's been a journey in learning and so far from over........ but the issues I've discovered facing Canadians on a daily basis is more than any person should have to suffer through. Just to know better is possible, but then be forced to accept that you can't access "better" is one of the hardest things in the world to accept. I won't accept it and I hope you don't either.