Holidays

(From clockwise: Terry and I’s Tree Ball; Mom’s tree; Dad’s tree.)

I won’t lie. This batch of holidays this year was rough, probably the hardest I’ve ever faced. Every single moment was a reminder that Nim was dead, and that Hayleigh is also elderly and on her way.

(Hayleigh turned 13 this year).

However, despite the sadness that we all felt and shared, despite the obvious missing family member, we remembered, most of all, that we were alive, and Nim would have wanted us (and her) to have fun.

So, we did our best. Allow me to illustrate with some pictures.

Terry and my eldest sister, Jen’s, cat, Lenny, whom owned Terry the moment they locked eyes.

And here are the last pics, an attempt to display both of Jen’s cats watching the madness below them.

I didn’t realise until just now how little pictures I actually took this year. This isn’t like me when it comes to holidays; I usually try and chronicle as much as possible. While it’s easy to side laziness and illness as the reason why, I actually have come to realise that I was simply too distracted – too busy – at times to even care.

At Mom’s, I was so preoccupied with trying to handle all of the cooking so Mom wouldn’t, I missed many candid. camera moments. At my dad’s, pretty much the same thing, save that I wasn’t feeling too great.

Both places involved playing a game I love now called “Drawful”. I regret to not recording ANY of these sessions as they were absolutely comedic gold. Oh, well.

I think that’s the point: it was fun, still, despite the loss of Nim. We still managed to somehow stay sane and happy enough to enjoy two days of stress together, and that was nice. I regret not being as camera-happy, but plan to make it up next year :).

I shall write more in the new year. That is a promise :).

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Wonderful Wonderland

So, today, I braved the crowds armed with my walker, and went with my family to Canada’s Wonderland! I was unable to go on any rides (not even the carousel; my walker was banned), but I had so much fun with my family.

Days like these remind me that it’s possible to be in pain and still have fun. It’s a lot harder than it used to be, and the limitations are almost heartbreaking, but I went and managed to stay for four hours. That’s, for me, pretty immense.

So, here are some pictures! Enjoy!

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I’m Sorry

I regret not keeping up with this blog. It was a gift by several beautiful people, yet here I am, letting it rot. The truth it, when it comes to writing about my illness and living with it, I’m struggling with both. When Nim died, a very large part of me was committed to the kiln with her, and I will never get it back. That doesn’t mean I regret being Nim’s Mom; quite the opposite in fact. But I do admit that in many ways, she gave me purpose, and now I have to find a purpose without her, something that is not easy.

Allow me to elaborate, if you would. Every single day, even during my worst flare-ups, and with my mum’s help, my day was centred around Nim, especially when she was at EOL. I had a slew of alarms set just for her, alarms that even she learnt to recognise and anticipate – she was a smart cookie as well as looking like a cookie :). I don’t regret waking up every morning at 4 if it meant seeing her awake at 9. It’s amazing what your body can get used to.

But I do admit that it looks like those years have left a physical mark; my illness has worsened from IBS-C to acute IBS-A (and yet I still lost my disability. Go figure.). My depression is terrible, to the point of almost suiciding more times than I will ever admit (shame). My medications don’t work as well, and even the pain doctors don’t know what to do or make of me. For a while, I wanted to die, because what was the point in living a life so sickly and so pointlessly for nothing?

Here’s why, in case some of you are like me: a recluse, housebound, refused by doctors and very close to the edge:

Sunsets and Sunrises. When you can’t sleep and know you won’t sleep, get up and go to the nearest window, and just zone out. You may cry, you may glare, you may not even look. But eventually the sun makes its show, and it touches you.

You’re not alone. Even if you live alone, you’re not. It can feel that way, and in the darkest moments you wonder if anyone would notice you dead before you started to stink. It’s easy to die nowadays, easy to find painless methods to vanish quietly. But you’re wrong. Someone will find you. Family will find out. No matter how many times you fight, you have some kind of family who loves you, even if not by blood. Your hand touches so many others. You just don’t know it. You will die one day, of course, but wouldn’t it be better to mean something? To say you tried all you could, you saved as much as possible, you did the best you could? The thought of the person who has to find my body stops me each time, because that can destroy a person – no matter how noble the deed. Death of a Salesman, remember?

You are needed. A man I consider my friend names Alex Botten, who recently also suffered similar issues, made the time to comfort me in my moments of wanting to join Nim. He told me that we are all parts of the universe, just shaped in specific ways (typing this makes me tear up even). He and I are human shaped, and Nim was dog-shaped. He added that there will be other dog-shaped parts of the universe who need me and are waiting for their turn to be loved by me. I just needed to stay alive. He kept me alive that day, because he was right.

To love doesn’t mean to die. There is a cycle to this life. When Nim died, I was bereft, and needed the love of my cat, who always loved me even when I sacrificed time away from him to help Nim. Now, I can focus on this cat, my Milo, my loafy boy, with my full heart, not because Nim is dead, but because Nim is within me, and my heart is open fully for the first time for Miloaf. When I realised this, he did, too. Now we’re practically glued together again.

Talk to someone. Even anonymous online, please, don’t let these feelings fester. I say they pass, but at first it’s more like being in a wave pool. There are people who understand you more than you think, and they can help you. They helped me. Don’t underestimate the power of online friendship.

And finally, don’t waste it. We are gifted with this precious life, one that could end in any second. Every single day is like this. It’s hard to wake up when you remember your sadness, but you need to quietly notice: the grief is a mite lighter today. Because it is. You will survive. Choose to. We need you.

That’s all I want to say. Thank you.

A New Day

Nimue Erica Gemmill, born March 28, 2001, in Lindsay, Ontario, Canada, passed away yesterday at the age of 14. She was battling chronic organ failure accompanied with gasto-intestinal distress and crippling arthritis, and eventually she did sheath her claws and surrender to the Death of Dogs painlessly, flawlessly, and with a heavy sigh of relief. With her long-term vet, Dr Christine Nawas (nee Aegis), and two of pack-mates (myself and my eldest sister, Jen), as well as two very skilled and brave techs, she passed comfortably and smoothly in the comfort of her own bed and home in Meadowvale, Mississauga, Ontario.

Nim was my life for almost half of it. At 16, on a trip up North to see my mum’s family, my cousin Erica (nee Gemmill), a constant source of local dog news, alerted us of a small litter of dogs (mutts) that were born nearby, and that there were two left. Would we like to see them? At the time, we had two other dogs (Sadie and Dusty), so we (my mum Kate, Jen and I) were humouring her as well as ourselves. Nobody can say no to free puppy love, right?

We went. We saw the puppies. There were two left: one male and one female. Would we like to see them? We agreed and were led to the backyard. I knelt down to the two small smudges of black and white, and I honestly admit that I don’t remember what the boy looked like; my mind was too focused on the girl.

I knelt down on the grass, surly but also charmed in my damaged and depressed teenaged mind. My hair was pinned in a bandanna from the heat, and as I knelt, the little girl toddled over on her bow-legged paws, wagging her tail in a 360-motion we would soon name “the Roto-Tail”. I held out a hand for her to sniff, but she bipassed it and crawled right over my lap and into my arms. Shocked and awash in new puppy smell and skunky puppy breath, I felt tiny, razor-sharp teeth graze my scalp as they found purchase on that bandanna. With a proud little growl, this little dog wiggled and wagged as she tugged that bandanna right off. With it, she had won my heart. We were coming home with this pup no matter what.

On the way home, while fighting over who got to hold the little doggie, barely bigger than my entire hand, we also decided on names. Sadie was actually legally named Scherehzhad (my spelling sucks) “Sadie” Langley (long story), so we thought of names from books. My brain was too busy altering its chemistry to this little dog, so the only names I came up with were inane ones like “Cookie”, “Paint”, or “Stinker” (a running gag; I always says the default name is “Stinker” to make everyone crazy :P). Jen, however, was the one who named her. She told us the story of Merlin’s lover, Nimue, and I was entranced. She said we could call her Nim for short, but Mum and I were puppy-brained and translated that to “Nimmie”. Jen hated that, until she started using it, too.

At one point, we had to stop for pee break for us all. Wearing a little red collar and with a thin red lead, we toddled with our bow-legged bubsy through the tall grasses found in streetside rest stops. She peed and pooped little puppy poops, and then puked on my lap and was happy after. Ah, tradition.

Once home, we were nervous. We had two dogs already. How will we be able to get Dusty and Sadie to accept this random puppy? My older sister Heather was rightfully miffed that we had made this decision, so the dogs were sure to be pissed.

Poor Nim was confused, and we carried her to the backyard. Of course the other two followed. I was inside at the time, so I don’t know the specifics, but I do remember Sadie coming to the door with a nose covered in wet puppy poo and looking happy about it.

14 years were spent with this beautiful animal. She saved me from suicide more times than I care to count. She licked my tears when I couldn’t breathe. She sat on my feet when I writhed in pain. She greeted me like I was a super star every time I came into the room. She didn’t know it, but she was the star in my life.

Now, she’s the star in my soul.

Long Time Neglect

You know, when I was given the amazing opportunity to write for WeAre1Voice, via my dear but also dreadfully neglected friend Miz Mercy, I had no idea that I would have to actually come back after months of silence in an entire new year just to keep up with the bare minimum that is ever asked of me here, if at all. I truly regret my silence, negligence, and all around jerkery, with a long, meandering, un-planned post just for you.

So, my last post was on December 27, just before the new year. I was trying my best to be as positive as possible when it seemed like my dog Nim was likely to die at any second. Despite my silence here, I did make some videos about Nim, my struggles with her, as well as some current events and topics I won’t rehash here, in case you’ve already seen the vids. if you haven’t, you didn’t miss much.

I have cut off my hair again. In fact, it began as summer was ending, first with a few snips, then more, then I bought an entire self-haircut kit (of course geared to men) and ended up not only going super short, but TOO short; I was almost bald in the back once I got Terry’s help to fix my hack-job. Since the first bad cut, it’s gotten easier to learn how to cut my own hair. It’s also, to be vain, great therapy as well as money-saving. I’ve always been obsessed with my hair; it’s one of the few things I can control. Now, it’s 100% under my control, and if I fuck up, at least I didn’t waste money like I used to.

Onto other things, I was in the ER twice earlier this month due to new, unbearable pain in my right (and sometimes left) sides. The first visit I was doped up and ultrasounded (?), then CT-scanned, only to get the diagnosis of “nothing is wrong that we can see. If in a few days you still hurt, come back.” This turned out to be the case, indeed, as it only got worse. However, the second visit, while faster, only gave me more questions than answers, as even with an X-ray, there was still nothing.

This was when my depression decided to kick in full force, and I started to seriously contemplate suicide. This is never an easy topic to discuss, especially since it’s a weakness of myself that I loathe and wish I never had. I actually love to live. I love the beauty of the world and the rare beauty of its peoples. But when it comes to myself, when all I see in myself is a 30-year-old recluse with a partner who deserves better and a family probably tired of my shit (these are my thoughts during suicidal episodes, not the truth of things), I contemplate seriously about dying. However, I’m also incredibly lucky: I have a partner who loves me so much he wept, a mother who holds me when I sob from pain, an eldest sister who listens and distracts me, and an almost-cousin who knows my pains all too well from her similar ones. I’m incredibly lucky that I not only have people who love me, but who also make sure I know they love me.

I’m well aware of how rare that is. And I really try not to take it for granted. Hence why I’m writing here, too. This used to be a daily or at least weekly method in order to make a log of my health in a way of therapy, and also help people in a similar trouble. And I’ve failed terribly at my one thing I could do to help others.

Not anymore.

As you can see, I didn’t do it. I didn’t even get anything to even start it, save gnawing on my cuticles, which I’ve done since being a kid. Instead, I got angry. I’m very active on Google+, and I started using that anger and pain to armchair-activist my way into the world. I know that’s a loaded phrase, but in my case I know it’s true – for now. All I can do at the moment in my current state of weakness is BE an armchair-activist. In fact, most people only have that because of how ill they are. I actually don’t think armchair-activism is a bad thing, nor should it be treated as something dismissive, though perhaps I’m biased. And I’m also getting off-topic.

After a long talk with my family doctor and much crying, she pulled strings and got me two appointments: one with a local and experienced GI and one with a surgeon (the appendectomy clip bothers me for some reason; I don’t like that it’s there and I’m sure it’s part of the problem, as you’ll soon see why).

Due to a lucky cancellation, I was actually able to see the GI yesterday, months in advance. I went in fully expecting another dismissal, another “learn to live with it”. That’s not what I got. I was asked the usual history questions, underwent the usual poking exam. And that’s when it got interesting.

He poked my sides, where my ribs are. And it hurt. This is not new to ME; I’ve always noticed that pain in my sides, with my ribs; I always assumed it was the same with everyone, since ribs can be quite delicate. Was I ever wrong.

It’s a condition usually common in women like me, overweight and big-breasted. He called it musculo-skeletal pain, so when I looked it up last night I found the exact name: costochondritis. It’s curable, but it’s going to take at the very least a year, because it involves losing at least 10kg, getting supple and fit, correcting my posture, keeping my underwire bra use at a bare minimum (the wires dig in and cause the ribs to concave even more) and, ironically enough, GO BACK ON PAIN MEDICATION.

He was one of the most honest doctors I’ve ever met. “Some people with pain like yours require pain medications. It’s just the way it is. And until you’ve gotten on top of this, it’s going to be the main cure. There’s nothing wrong with it.”

I cried. Hard. To know that there’s a name, it’s curable, I’m not in danger of exploding organs, and that I wasn’t wrong, I wasn’t wrong at all about the pain meds being the answer until I got fit. I was relieved, angry, and happy, all in one go.

Also, I have IBS-A, not C. It means depending on the day and the food, it can clog me up or rush right through me. That was surprising to learn, too.

So there’s my health update. I just hope my family doctor finally understands and prescribes me the pain meds I need. I like her and don’t want to have to change doctors, you know?

Terry and I have been slightly strained by this, but only on my side. I’ve had to see him weep because of my pain, and that also makes me want to die. Causing the man I love to weep for me is the most painful thing I’ve ever had to see. I don’t blame him or anything like that. I just can’t stand to make someone cry, especially those I’ve loved. It should be needless to say that I’ve offered him an open door and he can leave me any time, no questions asked, should this illness get too much to control. And I mean it. I would miss him, my heart would break, but if it meant he was happy, I would be okay. The thing is, it’s not what he wants. For him, according to him, being away from me, being apart while I’m in that pain, is far more painful than anything else. His inability to cure me makes him weep. He even admitted to wanting to fly me to some country just to get my gallbladder removed and to see if it helps.

I want to marry this man so desperately, but what I have never realised until recently is that, in all but legality, we’re already married. For us, it really is in sick and in health. I love him so much,

I think that’s a good update for today, save one more thing: writing. I’m going to try to write here daily from now on, even if it’s one line or a line of cussing. I think it’s important to not only document my life, but to also write. Additionally, I plan on brushing off the dust of my sister page to this one, my writing one, and post a few stories. They’d be unpolished first drafts, but at least they’d be a taste of how I write, which is something!

I’m going to try to stay positive. Life is too short for the alternative.

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Something Worth Holding Onto

cropped-tara6.pngI’d like to update on a happier note today. I’ve noticed that the majority of my posts on this poor page have been depressing and dark, and usually have little to offer in terms of hope and understanding when it comes to having the illnesses I do. I shamefully admit that instead of being an inspiration to others sharing the same fates, I’ve been proof of the worst-case scenarios.

I spoke last time of several things that I’d like to actually tackle one by one with updates on each. Since writing that post, my health has not improved. In many ways, especially with my mental health, much has deteriorated further, which is incredibly unfortunate. My diagnosis is still in the air and I’m still very emotionally confused and very deep in depression. That actually hasn’t changed.

What has changed is the fact that, against all odds, against all reason and assumption and likely scenarios, the one thing I was so sure would never happen actually did.

Nim, my 13-year-old dog-daughter, survived (and is still surviving as I type) this holiday season. And it’s thanks to my mother and her generosity and kindness. This may seem like something small, but I have to remind those of you who already know and educate those who don’t. My family is not rich at all. We’re not poor, but we’ve brushed shoulders with it several times, and we all know the fluid fragility of money. I made it clear that even if Nim didn’t survive Christmas, I wanted all of the money that would have gone to me to go to her care.

My mother respected my wishes, and thanks to her, Nim has survived. She is much better now than that she was when I last typed. She hasn’t yelped in pain in weeks, can walk and even trots, her sleep has improved and she can sleep deep enough to dream, and she plays. She PLAYS. This is huge. She only has this bad habit of gnawing on toys obsessively to the point of damage; she half-ate a squeaker which, had it been more and of thicker plastic, she would have died.

For whatever reason, the universe decided to give me a break for a change when it comes to her. I don’t know how long it will last, but I have no intention of letting it slip through my fingers. Every chance I get, I am with her. And she with me.

My writing has stalled due to my nursing Nim, and thus my year-end goal of having my first novel typed out will not happen. However, I’ve given myself a break due to Nim and allowed myself to push the deadline to my 31st birthday (April). I also plan on finally posting my short stories, related to the future (aforementioned) novel(s). With my new schedule that is based around Nim’s care, I know i won’t have as much time and freedom to get it done sooner (not complaining here), but it will happen. It has to. I’m 30 and I’ve nothing published, and that’s a disgrace. If I have to do it myself, then I will.

Lastly, I want to address my last sentence that I tossed in that post. I am an atheist; this is a fact. however, to use it the way I did was ridiculous. To say ‘boohoo, my life sucks, so that’s why I’m godless,’ was truly immature, and I’m very sorry for it. I’m not an atheist just because there is misery in my life. I actually have explained it in a video of mine that I can link if you’re interested. I haven’t given up yet, because my puppy hasn’t either. What kind of puppy-mum would I be? I would feel like I’m betraying her or something. But her dying, her living her life and then it ending, is not the reason for my disbelief of a god or a religion, and by making it seem that way, I’ve made myself look like an idiot. Let’s not have that happen again :).

How were your holidays?

By Tooth and Nail

Dearest readers,

I’m so sorry I’ve been silent for so long. a lot has gone down hill in the past month, therefore I’ve neglected updating simply because my thoughts, emotions, and pains have been too overwhelming to report. And sadly, they’re only going to get worse, not better, though I hope it waits for the holidays to be over…

So, back in November, I went back downtown to get another assessment, as the medications I’m currently on do very little to ease the pain I feel all the time, let alone stop it. Despite my honesty and my pleas, I was basically told another version of “learn to live with it” and instructed to purchase a machine that can be between $100-500 (a TENS machine). i did buy one, and it does help a bit, but it’s not something I can wear all the time, and I’m in pain all the time, so…

I was also told that it’s possible that I do not have IBS, but in fact nerve and muscle damage from my appendectomy that, as it turns out, WAS NOT NEEDED. So, every time I sat down to type on this page, all I could see was that I was supposed to be the voice of IBS-C. In fact, in a way, it helped me that I had a name for my illness. Now, I’m just exactly back to where I started in 2010, only jobless, almost penniless, and on more pills than my grandparents (all of them) ever took.

It’s been a struggle to hold on. There’s been some self-harm. My doctor knows, but I know she’s taken several steps back away from me now. She’s basically stressing that I need a new GP, and when she tried to get a new GI doctor to see me, I didn’t get an appointment for months, and it’s not even for this year. it’s in SEPTEMBER OF 2015!!!

Forgive me, but this is all kinds of fucked up in my book. First you drag me along for four years, leading up to addiction, memory loss, weight fluctuations, emotional break downs, and hospitalisation. I’ve spent thousands of dollars on pills that don’t work, and now my own doctor wants nothing to do with me. Even the most reputable, respected hospital in the whole fucking country no longer gives a fuck about me.

How can anyone expect me to be okay through all of this, and then slam the following on me, too?

A few weeks ago, Nim started to show signs of dying. She’s stable now, but she still suffers, and we don’t know how long she’s able to hang on for. she’s 13, very sick, and now has very bad skeletal pain. She probably only has a few months at best left. When I found this out, I wanted to die. Nim is a major reason why I’m still alive. She saved my life when I was 17 and teetering on the brink of self-destruction. Caring for her was like finding a new side to myself, one that doesn’t care that her lap is the chosen receptacle for puppy vomits. I loved her from the start, and will love her til I die.

And yet she’s leaving me behind. It’s inevitable, the curse of a petparent: you will always bury your children. But for some reason, I guess I always thought I would die before her. I never prepared for this. Now I have to, and fast.

Today is a really horrible day to be writing, but I thought it needed to be done, in case anyone was wondering. I’m a 9 out of 10 in my pain scale, and poor Nim is suffering from the cold, too. This is not a happy holiday for me.

And you all wonder why I’m an atheist…

Far and Away

Hello. I apologise for my unusual silence. This post plans to not only explain it, but hopefully also eliminate it right with this post.

So, what’s been going on? Well, I have new pain, still, pain that still refuses to respond to any of my medications and that grows worse weekly. I have had tests done that, save bloodwork showing increased pancreas enzymes, tell me absolutely nothing. And, in addition to that, I’m up for review for my eligibility for disability in my province.

Kinda overwhelming. It also doesn’t help that my IBS is linked to my depression, and vice-versa. It’s a perpetual mind-fuck of pain and confusion, and the increased apathy from my doctors on its behest is, at the very least, distressing to me.

So, what can I do? What can one do when faced with dilemmas she cannot control no matter how hard she wants to? If I were religious, I would probably go to a holy house of some kind and pray for guidance, but I know any god hung up that phone on me decades ago (or perhaps I left it off the hook). I could meditate, distract myself with some of my favourite Buddhist books written for pain, but then I sadly am reminded that remission seems to be a mere wisp of a dream for me. I play video games from my bed – and that does help a bit – that of course makes me look slovenly and unwilling to try to heal myself, despite the fact that throughout it all, I’m gritting my teeth against very real pain. My freedoms have been severely affected by this, as I can’t even ride my bike anymore like I used to.

This is important, because even when I was over 100kg, I was still able to bike long distances and keep fit. Ever since my surgery, no matter how hard I’ve tried to, I cannot keep on the bike for longer than ten minutes without having to pull over and try not to retch. As such, any hopes of getting fit seem to be out of my reach.

And of course this affects my depression, which keeps my moods so low and so dark that I barely get out of bed, robbed of not just physical energy, but now mental as well. It’s the worst kind of experience to have to face without rest every single day for over four years.

Now, please don’t misunderstand that. I am in no way saying that my pains and problems are better/worse than anyone else’s in order to get fawned upon and petted with comfort. I express these woes here because I know it’s to an audience that has probably faced far worse and yet, being stronger than me as a result, they can still understand my small pains without judgement. That’s rare, especially on the internet. I’m so honoured to be amongst such kind, amazing people, and thus I would never express my angst in order to shame them or make them sorry for me. I’m venting my spleen, you’re saying, “There, there,” and I feel better and I hope you do, too. That’s all.

There is some silver in this dark granite cloud, though. Increased bedrest means idle hands, and since the main tool of my hands is pen and paper (you thought I was going to say vibrator, didn’t you? Well, yes, but certainly not while writing. How messy and confusing!), I figure I might as well utilise my crappy interior and try to make pretty exterior things for others as well as myself.

So, I’ve started to step up making videos. I’ve set up a new page here on WordPress designed to have my original short stories written out for anyone to read. And I’m continuing to work on my novels as well, hoping to have one transcribed by the end of the year.

And it does help. Being creative as therapy is an immense gift, and I’m very blessed that I have found a way to use it. Especially in dark times like these, when fear rules me and I can barely sleep.

Pancakes & Rice ~ Aunt Jemima & Uncle Ben

A very well-written and though-provoking post. Please be sure to comment and let her know she is awesome for writing this!

Voice of the African American Female

We grew up with these brands, we never thought anything of them other than Uncle Ben meant rice & Aunt Jemima was an insult in addition to a pancake brand.  Today, Quaker Oats is in the news because the family of one of the women depicted on the pancake brand is demanding to be paid for her being jilted out of the money the company has earned by using her likeness.

Quaker Oats is saying that they can’t find the contracts that were negotiated for the use of her likeness therefore in their minds, they don’t exist so the family is not entitled to any payment.  Ok, why did this catch my attention?  First because of the irony, QUAKER oats….Quaker.  What? You don’t get it?  Alright, here it is, first of all Quakers were the first vanilla folks to condemn slavery so I find it quite ironic that a company…

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Stigmas and Labels (Potential Triggers Listed)

Trigger Warnings: frank talk of suicide, pain medicine, addiction, emergency room visits, depression, pain, and emotional turmoil.

(Forgive the lack of images or polish today; have to update with my phone. I will edit the obvious mistakes when I can.)

Let’s talk about stigmas. Everyone, I’m sure, who is reading this, has suffered the injustice of stigma or labels. Many people with similar illnesses as mine can probably read the following and recognise much of what I’m to say. Remember that. It’s very important.

I’ve been – and am – the constant victim of stigma. Be it due to my physical looks, my slower intelligence, my lack of social skills, the way I dress and talk… I’ve been called every filthy name you can imagine save racist terms (this is truth. I’m white. I was never racially bullied in school.). So I imagined that, when I realised I was going to be sick for the rest of my life, I would be able to handle the similar stigma and labels that I would surely get as a pain victim.

It’s been four years, and I’m ashamed to say, I’m so affected by the labels I’ve been given by people who supposedly want to heal me and whom I trust my life with, I’m absolutely terrified of the hospital now. Even visiting anyone at my local hospital paralyses me. Even in my worst hours of need, I refuse to go now. And I think I’m ready to say why.

Ever since my appendectomy, I’ve been on pain medicine. I was told that pain following surgery was  and eventually it would fade away and i could be normal again. This was one of many mistakes I made: Not questioning the method of my surgery was the first. The second was being told to take my pain meds every four hours even without pain.

I’m not joking. That is what the bottle said (I wished I had kept it). And thus, from day one, I was firmly held by the hand of opiates, one that would destroy much of my life to the point that I will never be able to work again.

To date, I don’t know what ruined my body: the surgery, the pills, or both. Either one would barely be bearable, so needless to say, both? But for four years, I was on opiates every single day. Name it, and I probably took it once (save Fentanyl, thank FUCK). I honestly can say that I took too many, because it takes a lot of opium to dull the pain I have, but they actually helped me LIVE. I could function rather well. Once we found a good dose, we’d keep it and that was that.

That was the idea. But to date, with dozens of versions of pill cocktails and violating tests, there is only one drug that kills my pain with the least side effects (save the obvious adding of): hydromorphone.

Yep. Drugstore Heroin, a cancer drug. Two years ago I was given the drug in the ER after ten hours of tests and drugs and sobbing and screaming. It was the only thing that worked. I was so relieved, I cried.

Ironically, the drug that would have kept me working is the one that probably got me fired from my job once my bosses found out. They lied about why I was being fired (boss said one thing, ROE says another.), so I have no idea, now.

Anyway, now jobless and unhirable, I had stress. And despite how well the drug worked, stress makes my body scream, and I ended up in the ER many times. The first couple of times I was treated well and taken seriously. But apparently hospitals in my town have a two-strike policy, and if you come in a third time in pain, you must wait, in that agony, watching people with lesser issues than you and who arrived after you get helped before you are even remembered (at least four to six hours minimum wait; longest was 16 hours). Once, I was forgotten for so long that my blood sample curdled and they needed a new one.Seriously. This is in Canada, people.

Now, I go to an ER and am told to “learn to live with it.” They do not ease my pain; they don’t order tests. They dismiss me, see me as a junkie, and throw me out.

I haven’t been to the ER since summer, and that time wasn’t even my local hospital. That time, I was literally suicidal. I wanted to die AT THAT SECOND. What did they do once they got my info? IGNORE ME UNTIL MY MOTHER CAME. And we waited an hour. Asked for help thrice. And then we fucking left, telling them that we weren’t signing out ADA because there was no doctor.

I’m sorry for my language. I try to limit my swearing here, but I feel the cussing serves a purpose, here.

This month and a half have been agony. And of course no one knows why or cares enough to test me again, despite the fact that the pain is new and worse. I’m not on opiates, but I am on a sedative and a cannaboid, nabilone. I KNOW I will be ignored if I try to get ER help.

Now, remember what I said? About how many of you now have sore necks from nodding? Or if not, to think about those who do? Good. Because what I’m about to say affects you.

Do you know why I wanted to die? Because I was sick of being labelled a junkie when I have legitimate pain. I’m terrified of dying in an ER because no one took me seriously. I’m afraid of never being able to trust the healthcare system with my life. I’m afraid I already don’t trust them, or maybe should never have even trusted them with a simple childhood surgery.

Now, I stress: not all hospitals are bad. Sometimes, a good nurse who did their job was able to see my pain and fight to help me. But it happens less and less now.

My family doctor has given up, despite having a method to ease my pain at her fingertips. She fears that her job would be lost along with mine if she gave me opiates. That is what is first in her mind, now. I get it. But I also do not.

My secondary doctors, my psychiatrist and GI specialist, barely see me and repeat the same ineffectual methods I’ve attempted and failed more than once.

My tertiary and team doctors find me sympathetic and sincere, but also probably an addict.

It’s no wonder that those of us with IBS and/or depression choose to trust the ends of our lives to ourselves, rather than the fakers and liars pretending to preserve it when really ignoring it.

It’s no wonder I dream of miscarrying children, of losing my partner to another, of my mother and family disowning me….

I do not deserve this. I am supposed to believe this. But how, when the entire universe screams at me otherwise?

What do I deserve, then?