Health Update: Hopeful Waiting…

I entered my appointment with my family doctor with a lot of hesitation. In my purse, I had a large stack of printed pages about Elhers-Danlos and the reasons why my odd array of symptoms lined up with it. I was nervous. Anxious. Waiting for the inevitable opposition and roll of the eyes.

And surprisingly she looked at me honestly and told me she didn’t think I was nuts for considering that as a diagnosis. She didn’t need me to fight or argue against an imaginary hypochondriac label that I put on myself.

She actually thought it was time we start looking into the rare things that could be wrong with me considering a lot of the usual suspects didn’t fit and my symptoms are just getting worse as time goes by.

I was… needless to say a bit shocked by that. I must have looked dumbfounded. (I know I probably sounded like it.) In all the many scenarios in my head on how this conversation was going to go – that option honestly hadn’t come up. Welcome to the world of OCD my friends! Always plan for the worst.

So she’s setting up an appointment for me with a Geneticist. Apparently, that’s the people that can give a Yay or Nay on an actual diagnosis.

The bad news? Likely this appointment is going to be many months down the line. Ontario health care is still having a sluggish problem with backlogs and shortages. The wait lists are horrendous. Until then I have medication to try and ease the bad stomach cramping and pain – but I am only allowed to use it when absolutely necessary due to the harshness of the medicine possibly causing other issues. So this means I’ll be putting up with daily stomach pain for at least a few more months. (Heating pads are my BFF at the moment.)

The good news?

Maybe… just maybe… I’ll finally have a solid answer to the many health issues that have been with me forever. And I’ll have a proper understanding of why things are getting worse as I get older. And that is both amazingly exciting, and absolutely terrifying. Because of this? This whole process? It’s sort of been a huge part of my life and a big question on my mind.

Why am I the odd one out here? Why do I have so many ‘odd things’ wrong with me that no one can seemingly place together?

I told my doctor that the worst part of all my many issues is the processing part.

I’ve dealt with chronic migraines for a long time now. I am so very used to the ebb and flow of how they operate and the cheats and tricks I use to maintain a sense of balance. It’s become a lot easier to manage the day-to-day. Even the really bad days.

That is like one ball that I am juggling.

Then the Dysautonomia issues reared their ugly head. Now I had a whole new problem to sort out and learn to balance. I still have really bad days with that too – but I managed to find a balance and learned to juggle it just as well as the Migraines. I can function. Some days… not as much mind you, but function nonetheless.

Now the daily stomach pains, some of the neurological issues, the stabbing/broken glass feeling… Well, that’s another ball and I’m starting to get tired. I feel like I’m going to slip and keep losing my focus on the nice little balancing act I had going earlier. It’s becoming a lot.

I feel like finding the reason behind it all – the name of it. The reason for it. A true diagnosis of “this is why you are like this” and “it isn’t all in your head” or “all your fault”…

Somehow that gives me a basket to put all these balls into. Sure, just as heavy and still likely to have bad days with them… but far easier to process and manage. I just need to hope that things work out and this isn’t another false hope that won’t lead to an answer.

So my fingers are still crossed and I’m going to just keep juggling things until I know for sure. But perhaps if I’m lucky, patient, and hope just hard enough – maybe I’ll finally start to unravel the roots of this medical issue that’s been following me my entire life.

And that? That’s hope.
Never forget the Hope.

Moon’s Shadow: A Clerics Tale – Chapter Two

By the time Althor had paid for a few nights boarding and sat down at the Old Wolf’s Tavern, he was already exhausted. He had managed to find the book he was searching for – but a new problem had arisen.

Try as he might Althor just couldn’t read it.

The black leather tome which rested in his satchel bag had been written in some language he couldn’t identify. The symbols and ciphers inside were foreign to him, although they looked intricate and deliberate. Swirling yet small detailed script, curved patterns, and very careful ink marks. Some of it was written in inks toned gold, red, black, and even a strange shimmer of green ink that seemed metallic.

Although it was obvious from some of the designs that the content inside was of a dark nature – his Cleric skills could only tell him that this black book was of a dangerous sort. It felt far heavier than it should and… warm somehow. As if the very thing was alive in its own way. How he had never noticed this kind of book stored at the library before made him ever more uneasy. What’s more, the current library caretakers were almost too eager to let him leave with it. When had the careful keepers of the Arcane Library, guardians of all knowledge, simply turned their back on a book from their own collection?

They even went so far as to specifically tell him they did not want to see the thing returned. Mizrah would have had a fit. The old woman would have roared bloody murder over such a prosperous idea.

One step forward, one step back it seemed.

So here he had come – heavy in mind and footfalls as he finally made it up on this old tavern with spare beds and flowing mead. A welcome break considering he had no clear idea where he should be heading next anyway.

“What have ya?” The voice was kind and soft but still made Althor jolt from his thoughts.

His brows, which had been furrowed in thoughts and frustrations loosened as he looked up to the kindly barkeep that had made his way over to his table. Perched across his shoulder was a towel that looked a bit damp, but still fairly clean – giving Althor hope that whatever coming out from the kitchen would be the same. The smile that greeted him was kind and genuine and a bit of an uncommon thing in his world.

If Althor were a betting man, he would bet that the barkeep was a wood elf. The tone of his skin, the almond-shaped eyes, and the gold-spun hair tied up behind his slender curved ears made such a thing rather obvious. He also was dressed simply enough. Softened leather breeches, a loose woven tunic, a cream-colored apron with various pockets and pouches on a simple belt. Any descent of high elf probably wouldn’t be caught dead in such simple clothing. It seemed below them.
Then again, he wasn’t one to judge that sort of thing considering. Who knows how he appeared to the rest of the world? He wasn’t even sure he much cared.

Then again…

Subconsciously he ran a hand through his hair to make sure his scarred ear tips were well hidden before he returned the barkeep’s smile in kind, if not a fair bit more awkward.

“Ah, yes… sorry. I was going to approach earlier but I wasn’t quite sure what I wanted.”

“Bah, no worries. I’m used to having to hunt down those who wander in. You’d think they should have designed the place with more dark corners to accommodate the brooding types. I don’t even know why we have barstools sometimes.” Then he winked in jest to soften the look of embarrassment in Althor’s eyes. “I’m kidding of course. Barstools are essential in any given brawl. Great for throwing!”

“Well I assure you, I won’t cause such a ruckus…”

“Well have it on my authority that should you need – definitely go for the stools. They are sturdy and good for throwing! They can definitely help you out in a fight. But since we aren’t expecting one of those things for a while – what can I get ya? You look beat tired.”

“I have a room rented here, which is great. But I would certainly be grateful to have a hot meal in my stomach before I rest. It’s been a while since I’ve had more than travel rations. Is there anything you would recommend?” As if on cue Althor felt a slight gurgle beneath his vestments as his stomach was reminded how empty it was. Until the words tumbled from his lips even Althor had forgotten when his last real meal was. He’d been so focused on other things that it was easier to cut a new hole in his belt than seek out nourishment.

A kind nod and another friendly wink and the barkeep was already headed back to the bar. “I know exactly what you need. I’ll tell the kitchen you need the stormy special! Guaranteed to bring the life back to any half-starved stray that gets dragged in here.”

Stray. Well it wasn’t the first time he was called such a thing.

His hand absently rested on his satchel bag as he waited. The dark warm feeling was still there. Pulsing like breathing beneath his fingertips. Waiting…

The Sound of Hooves: Chronic Illness and Seeking Answers…

Truth be told, chronic illness gets a fair bit more attention now than it used to. That in itself is an awesome thing. People talk more openly about their conditions, their struggles, and their treatments. It makes them feel more seen and understood. And most of all – it gives them a foothold when speaking to medical professionals about treatment.

That is, if they have the right diagnosis to be taken seriously.

Life is hard for those struggling with chronic illness but not having a specific diagnosis for their conditions makes things twice as hard. You suffer all the same, but it’s not always easy for medical professionals to take you seriously when they don’t have anything to go on. Your amalgamation of symptoms and growing medical folder of smaller symptoms and problems sometimes don’t mean much to them if they can’t bundle it under one bigger umbrella that they can prove. You get… overlooked. As sad as that is.

For almost two years, I’ve been struggling with constant pain in my lower stomach. One that grows, varies in intensity, seems to be triggered by odd things, and just… it’s ever-constant. It never fully ‘goes away’.

I’m no stranger to chronic pain, as I deal with daily chronic migraines that I’ve lived with for quite a while now. I also suffer from dysautonomia where I need to watch my heart rate and keep salt pills available in case I have an ‘episode’.

These things have become normal.

This new pain I’m being told is likely to stay with me as well. I’d ‘better get used to it’. And that my doctors will help me manage it, but they don’t know why it’s there fully or how exactly to explain it. While trying to sort things out I picked up a few more labels of IBS and Diverticulosis disease – and was told that both are presenting as uncommon. (The diverticulosis pouching is right ascending, rather than the lower descending that it is normally found. Yes, I suppose you can say I’m arse-backward.

My point is… this is so darn frustrating. A new set of symptoms. And only half answers. More paperwork going into my massive medical folder, but no real answers for any of it. No true diagnosis on why I have this armful of wonky things going on with my body that no one can really pin down and explain. And without that explanation, trying to juggle this armful of problems when speaking with doctors has been difficult.

First of all, trying to get multiple issues sorted at a doctor’s appointment is nearly impossible. It takes a long time to book and see a doctor, and they normally only allow you to speak about one or two issues at a time. So you have to be careful and pick and choose what issue is most important at the time.

And then it takes a lot of weeks or sometimes months to get any sort of tests completed for said issues that you brought up. If you need to be referred to a specialist, that can take anywhere from 6 months to a year at times. And even then, it’s normally a specific specialist for only one part of your list of problems.

When they suspected Endometriosis had returned when this pain first popped off almost two years ago, it took almost a full year to get my appointment with the gyne specialist to look at me. He took less than twenty minutes to wave me off saying that it likely wasn’t endometriosis and that I likely needed to see someone else. It ‘wasn’t his problem’.

One year of waiting for a twenty-minute appointment that did nothing. And during that time, there wasn’t much else done as they were waiting for his report.

And thus, people just get left behind in the medical system. The medical mystery limbo of chronic illness in Ontario.
So… as I was pretty much bouncing back and forth dealing with things on my own while waiting for my next visit with my general care physician, I did some research and came upon a condition called Elhers-Danlos. The Hypermobile Elhers-Danlos specifically. hEDS.

When I looked into the full symptom list and breakdown, a LOT of it resonated with my many small problems. Even some of the medical problems that I haven’t bothered to bring up with my doctors because there was never time to shove them into my appointments. It was like someone pointed a big red arrow at this condition and wagged a golden opportunity in front of my face. A big sign saying “This could be it!”.

It potentially explains why doctors had wanted me to get leg braces as a kid, why I rolled my ankles so much as a child, and why my legs are as flexible as they are. It also explains my GI track issues, the multiple abdominal hernias, my skin that doesn’t like to heal, the migraines, the stomach pains, the back pains, my hands giving out on me and dropping things…

A lot of it. In fact, almost everything.

So I looked up more research. I have the blue sclera in my eyes (something that my poor mother has been pointing out to me off and on for a while now… Sorry Mom. I thought maybe it was just weirdness from my Migraines…). I have ankle bumps (Piezogenic Papules) on both of my feet. My skin does seem to be stretchy in spots and my knees do bend backward a little.
It’s a tantalizing thought to be so close to having a reason for everything.

But the biggest hurdle is actually in finding this possible answer… and now trying to prove it.

Taking this information to my doctor and trying to get it diagnosed is where it all falls apart for me. I don’t have every clear-cut diagnosis criteria (and I’m older now, so a lot less flexible and physically symptomatic than I was as a teenager) and there is a big stigma about patients doing their own self-diagnosis. Normally it’s really frowned upon and actually can dissuade your doctors from looking into things. At least, that’s how it seems to go in Ontario.

Later this month I will bring in my own folder of paperwork of my research and my own written thesis of why I feel my symptoms line up with this possibility. I will put in the leg work of trying to prove that I’m worth a second look.

I will point to the sound of hooves and promise them I’m not just clomping coconuts together but there is something really going on. Doctors are taught to look for horses when they hear the sound of hooves, but if there are no horses then for heaven’s sake – please just find the Zebra. Don’t just stop looking…

I’m getting far too used to dealing with pain every single day of my life to allow them to keep telling me there is no real name for it and that I have to just ‘learn to manage it’.

Wish me luck.
I’m going to need it.

Moon’s Shadow: A Cleric’s Tale…

[ Wow, it’s been a long time since I’ve written anything fantasy based! I wanted to dust off the keyboard and work on a bit of character development that I’ve been thinking about lately. This is Althor – a Cleric of Selune from the greater worlds of D&D that I’ve been considering writing about. Perhaps I’ll turn this into a longer piece, or maybe this is an introductory one-shot. Currently it’s about as unknown as his mysterious backstory… Time will tell… ]

His fingers ran across each leather spine of old tomes he walked past. Books and books, each one neatly placed on white birch and marble stone carved shelves which towered high and elegant in the large and echoing chasm of the Arcane Library. Thousands of books. Maybe tens of thousands in all, if time had been taken to count every single one.

Maybe an Elf would sit and widdle away their long years to catalog each and every book one day. Perhaps. If bored enough they could even concoct some sort of map. Then again, a bored Elf was bound to find anything to occupy it’s slow march through time, and would be less likely to share their gathered knowledge even if they did waste their focus on it.

But luckily currently in these large spiral towers stood Althor. And although he was not of full Elven blood nor bored enough to try and create a map – he still knew these halls more then most. In fact, growing up here made these books almost feel like family, in a strange sort of way.

Distant cousins, caring aunts, educated uncles and well-aged ancestors. All of them as instrumental to his development as what he imagined having a living breathing family would have been. At least, to an orphan who grew up within a library – that was as close as he could figure.

The books, and of course, Mizrah. The Book-keeper.

He paused a moment, letting his deft fingers draw away from the shelves as he thought of her. It broke his concentration, and twinged in his heart. The spell faded in that moment and he sighed heavily as if to reset his concentration. Deep inside he felt a word form, then two. Remember… Release…

Mizrah’s death hit him harder then he thought it would.

In truth, this place seemed less for having lost her. This place that his angered youth had spurned and swore never to return to. A place that he thought he was running away from for greater things and brighter glories… and to escape the darkness that haunted him. A solution that only a stubborn and hurt youth could imagine.

As if running away from your problems was ever a viable option.

If he wished to continue the seeking spell he would have to find a way to work though these memories first. Distractions, no matter how painful, needed to be dealt with. So although it pained him, Althor breathed it in anyway and paused to remember the last time his ice blue eyes had seen her.

Mizrah was of the race of Man. It was one of her greatest strengths and also one of her unfortunate weaknesses.

She had kind eyes most of the time. Warm and brown, and usually always slightly squinted as if she were always trying to read you like one of the many books. Her skin was deep and tanned, and wrinkled like a well-read spine. And her laugh was contagious and would ring through the silence of the Library when she was happy – and her voice would cut sharply and clear the halls when she was not.

She was a great book-keeper, fondly and fiercely looking after each and every piece of writing. She would make sure they were respected and replaced – and never once did a book go missing for long. On her watch all things were in their place. Waiting for when they were needed. But keeping books and keeping children were two separate things.

When the half elven babe who was malnourished and having mangled docked ears arrived at the doorsteps it was Mizrah who reluctantly agreed to salvage him, as best as she could. She studied him with as much vigor as when she translated old texts. She provided him with a vast education and taught him the magics in the written word.

But a book didn’t cry out in the middle of the night with sweat and night terrors. A book didn’t ask you questions or demand your attention. You could love a book, but loving a child was so much more… complicated. And although she tried, and although she loved as fiercely as she could – Althor was a difficult task for a Book-keeper to handle.

He knew that it was her heart that he broke when he fled these books more then a few years ago seeking the adventure and glory he thought was stolen from him. A book that finally got away from the old woman. A part of her hearts collection that would unfortunately never return to her well loved shelves.

Books were so much easier to protect. Spurred and angry youth? That was beyond her. Perhaps it was beyond Althor as well. He was younger after all, and ruled by a touch of Madness perhaps. He only wished she had still been here. Somewhere.

Perhaps it was better she wasn’t.

Mizrah’s weakness was she was Human. As much as part of him knew better, he had always simply assumed that she would be dutifully waiting for him in these hallowed halls. As if she had the years to widdle away, categorizing the books she loved so well. To him, she simply was part of this grand place. As much a piece as the library as the lighting.

It seemed darker here now. Somehow.

Althor breathed deep. Swallowed hard past the gathered lump in his throat.

“I’m sorry Mizrah.” He relaxed his tight shoulders, allowed his head to drop slightly. He allowed the tightness in his chest to ease. “But I must let the past go. There is work to do.”

After all, the younger Althor was almost as much of a memory as she was now. He had travelled far, seen much, and been hurt too many times to count. He earned each of the white hairs that crested the sides of his head. The past mistakes were merely that – the past. Distractions that he must move past. Symptoms of a deep sickness he was still attempting to heal.

Althor had a mission.

His right hand wrapped itself once more around the Amulet of Selune that he wore around his slender neck. The cool silver chain and circular moon visage warming in his hand and vibrating with an almost audible hum. Once more he reached out his left fingers to touch along the shelves as they began to glow the same soft light as his amulet. His feet began to walk once more – lifted of the burden of his youthful guilt the spell of seeking began anew.

He had no map, no guide, no indication of where the book he needed was – but he had his matron, and she would guide him as she always did. Past the memories, through the guilt, and hopefully help him find the answers for deeper mysteries he needed to solve.

After all, the reasons he ran so long ago weren’t only because of Wanderlust. The nightmares were once again finding him. The hollow madness was once again starting to creep back into his soul. He needed to finally stop running and face this growing darkness or he feared it would swallow his soul entirely.

And should that happen deep down Althor feared that no book, no spell, no blessing from the Goddess Selune would ever pull him free from that shadow. His book would not end that way. He would make sure of it.