Life Changers: 17th B-Day

You know that voice in the back of your head, the one that sounds like your <insert authority figure here>, saying "You're going to regret that when you're older"? Ya, well, there was at least once in my life that I wish I had listened to that voice.

When I turned 17, my friends and I celebrated the same way we had been since I was 15. We loaded up into a car and went down the road to my Grandmother's to go sledding in the gullies at the edge of her property. This seems like the obvious thing to do when your birthday is in the dead of winter and you live in the Middle of Nowhere, Northern Ontario. This year, things were a little different. There was a good foot of fresh powder! So we did what any fun loving group of teens would do.

My boyfriend at the time was six foot two and built like a line backer. So he took turns lifting us over his head and throwing us down the hill into the fresh powder. It seemed like a good idea at the time. It may even have been my idea. Well, when it came for my turn, something happened. His foot found a gopher hole and it through off my trajectory. I landed on the flat of my shoulders, crumpling me like a tin can. I was in a fair amount of pain, and I couldn't breathe. I'm not even sure I managed to uncrumple myself right away. I know I couldn't even lift my hand to let them know I was okay.

They came scurrying down the embankment, and by the time they got to me, I was able to move around. I even got up and walked back up the hill, and continued to sled for the rest of the afternoon. I felt fine.

But today, among other problems, I've got a mysterious back pain that can only be managed with some of the most powerful painkillers this side of narcotics. I can't help but think back to that day, and hear my mother's voice in my head. "You're going to regret that when you're older..."

It's Not Lupus!

I meant to type this up when it happened, but to be honest, I'm glad that I waited for the reality of it to sink in.

In February, I had a follow up appointment with my neurologist after yet another test. First off, the test was on Hallowe'en. I'm not greatly pleased that it took me 3 months to get a follow up appointment. Having said that, it's the nature of the beast. It also helps that my neurologist is one of the best health professionals that I've ever had to interact with.

So, multiple sclerosis. It was something that my GP mentioned might explain my symptoms, even though it was rare in people my age. It was removed from the list of suspects, early on. However, when my symptoms started getting worse, it had to get added back to the list.

This most recent test was able to take it off of the list again. This news should have left me jumping for joy. I'm sure part of the reason it didn't is that my neurologist's clinic style greatly resembles an avalanche, meaning that I didn't really have time to think about it. I'm equally sure that part of it was simply shock. I have spent months getting used to the idea that I may end up in a wheel chair, or worse. *shudders at the thought of adult diapers or a colostomy bag* That I may have to start explaining to all of my very supportive friends, that Yes, I know that there are alternative treatments, but I am also a single, unemployed 27 year old. I cannot afford treatments that are not covered by OHIP. I can barely afford the medications that I'm taking now, thanks anyway. And no, I do not have the energy to apply for grants and enter test trials and all that sort of thing. This is where we get back to the idea of Quality vs Quantity. Yes, my health is kicking my ass, but I'd prefer to enjoy my good days doing what I want to do, not spending all day researching and making phone calls and writing emails to Doctors and clinical programs, and my local MP (Gee, you'd almost think I've gone over this a time or two).


So now you're wondering what I was left wondering. If it's not MS, what is it?

The popular theory right now is Fibromyalgia. I thought this was a disease which I knew something about, having had a Mother In Law who had been diagnosed with it. Turns out it's a lot more complicated than I thought. There are some who believe it to be a mind over matter sort of thing. People hear the term Phantom Pain and assume that it's a pain one feels because one thinks  there is pain. Not true.

Fibro patients show visual signs on brain scans that there is something wrong. Tests just cannot confirm the cause. Hence, phantom. Symptoms range from sleep disorders, to mood swings, to cognitive disruptions. To be perfectly honest, I'm sort of relieved to have a possible diagnosis that covers so many of my symptoms! Granted that confirming the diagnosis will likely mean several dozen more tests, as it is a diagnosis of exclusion. Think Dr House. Differential diagnosis. We test for everything until there is only one possibility left. And no, it's not Lupus :P While I am still mildly frustrated at the lack of a concrete answer, I am beyond relieved to be told that I will not in fact have to endure a needle being bored into my spine, and will likely not be suffering from degenerative symptoms. I did eventually have a good cry, and that helped it all sink in. But I spent at least a week explaining the results to everyone before it really sunk in what that meant for me. Having watched both of my grandparents fade away from cancer, and having several distant relations who have suffered from MS, my level of relief simply cannot be expressed with mere words.

Now comes the renewed efforts of balancing my life with my illness, and my pain with the drugs. The fold away cane that my Uncle bought for me has certainly been a Blessing, but I'm still thinking about investing in a wheelchair. There are still days that I just cannot move under my own power, and I don't want to be a hermit! I have enough wonderful friends that I'd never be at a loss for someone to escort me about in my throne ;) I've recently survived my first overnight convention, and am already making plans for a much bigger one next summer. More immediate plans include a week long visit in Hamilton for St Patrick's day, culminating in yet another brain scan, and a trip up North to visit my folks at the end of summer. Looking forward to seeing everyone, especially the babies :) I'm not going to let this condition keep me from living my life to the fullest.

Life: Quantity vs. Quality

What the hell is the point in a long life if you live it in misery? And no, I'm not talking about suicide, or people who are just plain melancholy.

They've switched my birth control because I was showing possible warning signs of blood clots, and have a family history of circulatory problems. I have spent the last two weeks bubbling with hormones, and popping tums because my stomach is a sewer. Last night, I protested out loud "I'll do the two months of guinea pigging, but if this keeps up, I'm switching back. I'd rather die from a blood clot than live like this, and I'm not being dramatic!"

I mean it. I am not about to subject myself to nausea, indigestion, and over all moodiness just because my other stuff MIGHT cause a blood clot. I didn't start taking painkillers because I couldn't handle the pain. What I couldn't handle was the nausea, indigestion, and overall moodiness!

I have been an absolute nightmare to live with. I've taken to throwing things, slamming doors, and swearing out loud when I have a temper flare. Then, when the temper dies down, I apologise to the people around me and then go sulk in my room, overwhelmed by the guilt of what I've just done. I've spent two weeks calling myself stupid, idiotic, childish, and even a coward.

I should be able to handle this! But with everything that I'm already dealing with...Add to that the stress of trying to keep up on my cellphone bill, meds, and rent on the pittance that OW provides...Trying to make plans to go and visit my family for two weeks at Christmas...The house being topsy turvy because one of the roommates is moving out...

I've been thoroughly disappointed and disgusted with myself at every turn. Temper tantrums quickly followed by bouts of depression. I actually caught myself seriously contemplating suicide for the first time in my existence. Sure, I've asked myself 'Do you think it's bad enough that you'd end it?' and generally I scoff and laugh at the preposterous idea. But yesterday, while crying my heart out in the shower, I caught myself staring that the razor and applying logic to the idea, listing reasons why it was in fact the right thing to do. I proceeded to cuss a blue streak, call myself a dirty rotten coward, and then finish washing and get out of the shower.

It took me 24 hrs to talk to someone about it. I actually considered calling the Suicide Help Line because I am the type of person who hates to be a burden on the people around me. I figured if I called someone who's job it was to listen to this sort of thing...But I ended up talking to a friend, instead. I had to laugh when I was informed that this was a thing that was actually expected, considering all that I'm going through. I suppose that makes a certain kind of sense. We can't be strong forever.

I want to be clear that I was not, and am not threatening to kill myself. The fact that I was reasoning it out in my head scared the shit out of me. I didn't keep it to myself for those 24 hrs because I didn't want anyone to stop me. I didn't tell anyone because I couldn't bear the thought of adding that sort of burden to someone else's shoulders. I felt, and still feel, a certain amount of guilt for having the thought to begin with. I am not a quitter. Nor am I a coward. I have strong feelings on the topic of suicide, as do some of my friends. I felt embarrassed to have even thought it, never mind to have admitted it out loud, and now, in a public forum.

That bullshit aside, I need to smarten the hell up. I need to stop being so negative. I need to stop lashing out. I need to be a better friend and roommate. I need to go back to being a better person. I have to stop doing the things that trigger that guilt within me, so that I can pull myself up by the bootstraps and out of this mire of depression.

I know that I'm depressed. Have known for quite some time, and had been doing certain things to keep myself stable. Raging hormones have upped the difficulty level by several degrees. But I can do this. I can survive this and anything else my body, my meds, and my doctors throw at me. They say that the proof of the pudding is in the eating. Well despite all of this kerfuffle, I've lost 8 lbs this month and am below 160 lbs for the first time in over 5 years!

I can do this.

I will survive.

I will live a full and happy life.

Physical Health: II

Let me begin by saying that my current Family Doctor is the second awesomest Doctor that I have ever had the pleasure of being the patient of. He treats me like a person, not a number, and asks me questions and gives me options and detailed explanations. He even takes my input and researches it to get a better idea of what information I've been looking at. Two thumb's WAY up! For the sake of clarity, let's call him Dr. R.

So Dr. R. listened to my history and my hesitant request for a painkiller stronger than over the counter, with a specific request to start with what I called 'baby pills', and nodded along as he typed up some notes and reached for his 'scrip pad. He gave me a small prescription for two different things. One a pain killer (tramadol), the other an anti inflammatory (naproxen). He gave a strict regimen of how to take it for the first little while, just to get a handle on the pain. Two weeks later I had a follow up after an x-ray. The results of which, low and behold, showed no evidence of the DDD previously diagnosed by the doctor (see previous entry). Not unheard of, but certainly unusual. An MRI was the next logical step, and so that was booked, and my pain killer regimen varied slightly. Now he wanted me to only take them as needed, but before the nausea set in, and to still supplement with my over the counter choices, just being careful not to mix the naproxen with other anti inflammatories.

At work, I was a new person. My direct supervisor noticed the change immediately with the new medication. She said the change in my face alone was remarkable. Weeks went by, and I was able to cope with the pain by rotating my new pills, supplementing them with a stiff drink once at home.

Now hold up! Yes, I get that the common perception is to never mix alcohol and pills. I am not advocating that anyone or everyone do this. However, the particular combination of my pills and alcohol was conferred with my doctor. He brought to my attention the risks, which are intensifying the affects, including side affect, of the pills and alcohol. Fine. So one drink is like three. I'm no lightweight, I can handle that. And I'm apt to be groggy. Fine, I only drink at home, or when very well supervised. No going out on the town with the guys. Ten Four. And yes, I'm aware of the possibilities of liver damage. What do you think all of these pain killers are doing in that department? If I have a choice between one pill and one shot or four pills or four shots, I'm going to choose the former. Thank you for your concern, now can we move on? Great.

So a few weeks go by, and the MRI results come back. Still no sign of DDD, nor of anything else significant, for that matter. And now we're back at square one...Where do we go from here? We wait. Until the symptoms change or worsen, we've got nothing to go with. Alright. I'm not exactly happy, but I can accept that. The pills are working, and therefore, so am I, so I'm not going crazy quite yet.

Couple of months down the road and the 'baby painkillers' aren't working as well. I'm back in the same boat of missing work due to the pain. Add to that, the beginnings of neurological symptoms such as confusion, short term memory loss, loss of sensation in left side of face, hand, arm and leg. Oh, and blackouts, lets not forget the blackouts. And all of this comes days after I've applied for a promotion. Go figure.

So I haul myself back down to Dr. R's office. He listens to my worsening symptoms with a growing concern. The simple fact that I am so young and experiencing such sudden and aggressive onset of neurological symptoms has him at a loss, but definitely concerned. He gives me a prescription for Lyrica to add to my daily regimen of pills. He explained the drug as a pain modifier. It's supposed to change how my body interprets the pain. I can still feel things like heat and cold and sharp, so I'm not likely to accidentally injure myself, but the radiating pain in my back is dulled to a background murmur.

At this point I am taking four vitamin D, a vitamin B12, a multivitamin, and one Lyrica first thing in the morning. Another Lyica later in the day, and , as needed, up to three half tablets of Tramadol, up to two Naproxen, and up to three robax platinum. How's that for a cocktail?

The Lyica comes in many dose sizes. I am currently on the second lowest possible dose. It's not likely that my body will grow a tolerance for the drug, so we should only need to increase the dose if my pain levels rise, which, is likely, considering the trend. And I'm not a fan of the idea of narcotic pain killers, so I'm more than happy to just let the Lyrica do it's thing, for now. And it has. It's been a Godsend. The Lyrica allowed me to go back to work again, this time for a few more months. I felt energised and ready to take on the world. I've given up the idea of a promotion, but I have volunteered for the closing shift, with a special note from Dr. R that limits my hours to 2 p.m. to 9:30 p.m. Being an experienced senior employee, this left me as essentially the after hours acting management. There was always at least one more manager available, and usually two, but I did some of the leg work while they were able to get to paperwork that had piled up on their desks all day. It was the perfect balance for me. I got to do all the fun stuff that my promotion would have involved, without the added headache.

But eventually, even the Lyrica wasn't quite enough. It's unclear if some of my symptoms are caused/magnified by the Lyrica, as they were already there before I started taking the pills, but the neurological stuff finally got bad enough that I couldn't be at work. I was having a hard time remembering things, I had to default back to little tricks that I'd used while still in training, and had a stack of scribbled notes surrounding my workstation. I got to the point where I could no longer answer a question from another agent while still working on my own assignment (something that I had had no issues with, prior), and sometimes, to the point of having to put my customer on hold just to gather my thoughts and remember how to use the computer systems and where to find the solutions to the problems they were experiencing. The best way that I can describe it is that if felt like I was slowly going senile.

But I'll leave those types of details for the section on Mental Health.

So I typed up my letter of resignation, and headed to my Boss' office after a chat with my Team Leader. My TL was sympathetic. She knew how much I loved my job and what it meant for me mentally and physically to be quitting. My Boss was at a loss. It just so happened that we were friends outside of work as well, so he knew the struggle I'd been going through. He joked around, telling me that he could only accept it if it were written in three languages. I smiled and warned him that at least one of them would be Klingon. When I finally left his office, I was nearly in tears. Giving four weeks notice for a job that I loved, was one of the hardest things I've ever done.

And as it would happen, I didn't even make the four weeks. Two weeks later, the symptoms had gotten so bad that I had to quit on the spot. I spent a week packing and sitting on the couch watching TV and playing video games, before moving to London. I was moving to a bigger home with friends that would be able to play nurse to me during my rough periods. Same rent, and I already had a network of friends there, so all in all, it was a good move.