Friday, 5 August 2011

What I do at night...

Door closes on the past day
either limping to my bed or falling into it
Laying flat
my heart beats faster
blanket moving
in time with my pulse.
and although it's impossible to be so,
I try to get comfortable.
either my music or the radio, depending on the day, sometimes i sing myself to sleep, other times I choose to open my window.
I listen to
the owls scream
and hope that the constant
rushing isn't cars,
it's the ocean.

Hours later
I'm tracing the wall with
numb fingertips that could tell you
every dent and detail in the plaster.

I can't tell where the pain is coming from.
like by laying flat, it moves to my heart
and with each beat of blood, travels somewhere else.

On the bright side
when I fall sleep
I'll wake up and it will be
another day.

Wednesday, 20 July 2011

Accomplishments, Anticipation, and Acceptance.

I knew I wasn't going to be good at this whole "blog thing." I keep trying to find something to write about, but I eventually discovered that you don't look for things to write about, they come to you. So, here goes my alphabet theme - if I find that I have nothing to post about, I will (in alphabetical order) choose to write about some concepts that can be related to my life! :)

My accomplishments are generally silent. They can be as simple as walking up stairs without stopping to catch my breath. (last week!) Or putting my closet door back in place without having to put any of my joints back where they belong! (yesterday!) Woohoo! I celebrate internally, so you probably wouldn't notice how much joy it brings me to do something I didn't think I could do - as simple as it is, whether intentionally or by accident.... I did it!

I anticipate the future, whether it be an event happening in a matter of minutes, days, weeks, or years. A few seconds from now will be the future.
Right now, on my mind are a bunch of important medical appointments happening in the next few weeks. First is a blood test and a visit to my GP tomorrow. Nothing too intense, just talking about new symptoms (grrrr) and have her take a look at my toe. (Two weeks ago, my pinkie toe and my chair had a physical disagreement over placement, and my toe kind of lost. Needless to say, it's still swollen, purple, and painful and we think I may have jammed the growth plate into the bone. Well done, Michelle, well done.)
On Friday, another session of physiotherapy... I'm determined to get stronger, and even though I do my exercise routine every day.... It's a slow process, I guess.
Next week is the Gastroenterology consult at Children's Hospital. This appointment I will find out if more tests or procedures need to be performed, (i first saw them in 2008) and if I am eligible for a feeding tube, as I am still struggling to gain weight. I've actually lost a few pounds in the last month, which is... well, bad.

After that comes my echocardiogram, which the rheumatologist ordered - because of my symptoms and a near diagnosis of a connective tissue disorder, she wants to make sure everything is working as it should be. EDS comes hand in hand with conditions such as Mitral Valve Prolapse, dysautonomia, Ventricular Tachycardia.... the list goes on and on, and unfortunately,  so do my matching symptoms.
And two days after my ECHO is possibly the most important of all - the geneticist. This is an appointment I have been waiting my entire life for, it seems. They have promised to do everything they can to give me a diagnosis - and whether it be EDS or not, I am ready for answers and acceptance.

I'm ready to accept. I'm finished crying because of the pain. I'll probably still break down very once in awhile, but I'm ready to accept that this is just my life now. I've never thought, "Why me?" in a self pitying way, I've only ever thought, "Why me" as in, What am I going to learn from this? What am I meant to do?
I'm ready to find out.
And I'm ready to live life again.

Friday, 1 July 2011

The Little Things.

Second post and I'm diving deep!

You know how they say "It's the little things in life?" For EDS and other painful conditions, it can be simply the little things that are the most challenging. These little things I'm talking about are the things most people don't think twice about doing. They seem pathetic if you think about them too hard. But these simple, everyday things like chores, movements are often the toughest.
For me, the top three hardest 'little things' are:

  1. Hanging up clothes - It seems so pathetic, but the lifting motion for me is like torture, especially when trying to grip a small plastic/wire hanger. Every time I raise my shoulder a bit too high, it pops. And the heavier clothes like coats and jeans aren't really that heavy, but the imbalance from the way they fold over the hanger weighs me down. See? It's pathetic. It takes me forever to hang my clothes, and I usually just shove them in my drawers to try and avoid it. Until I can't open my drawers and exploratory surgery on my furniture is required. 
  2. Pouring milk- First step: opening the fridge. Second step: taking the milk off the shelf. Inevitably a finger, wrist, or elbow will slide out of place. Third step: putting the milk on the counter because my arms are too weak to hold it. Fourth step: taking off the lid. Fifth step: lifting the milk up again. Sixth step: Pouring the milk INTO the glass... I frequently spill because my wrists are so shaky and limp. Seventh step: Lifting the milk again to stop it from overflowing. Eighth step: Putting it down on the counter again. Ninth step: Putting the lid back on. Tenth step: Lifting the milk and putting it back on the shelf. TADA! Let's hope I don't get thirsty again. I prefer to just drink water to avoid these ten steps, but water is "empty calories" and I need all the calories I can get! (And tap water of course...opening bottles is an evil maneuver I avoid as often as I can.) 
  3. Applauding/clapping - Again, I know it's sad. But I'm a zebra! I am that annoying person who claps at every ceremony until no one else is applauding anymore. I don't shout and scream (very much) but I like to show my recognition. However, forcefully slapping your hands together is not very clever when you have loose hand joints (fingers and wrists). Occasionally I just end up clapping lightly and slowly...stealthy way of avoiding sore hands.. :) 

The strange thing is that we come across these actions every day, and they become part of our "normality." So even with all the pain they cause me, I don't stop and say "Ouch!" while I'm doing them, because my "normal" is carrying on. And because of the recurring theme of an invisible disease, you would never know these things are so hard for me. It's easy to hide, but not easy to ignore.

However, there are the little things in life that makes us all smile. They can be as simple as finding a penny on the ground, or as gleeful as only paying for a tall drink at Starbucks and having them give you a venti instead. (Happened to my friend years ago and I still hear about it today).
These are the top three "gleeful little things" in life that make me smile.

  1. Bubbles. Call me childish, but I love bubbles. I love how you can see every color of the rainbow in one, how they quiver as they dance across the sky, and how, when one pops, it rains clean glittery confetti to the ground. 
  2. Clothes that just came out of the dryer. The smell, the warmth, the happiness that follows... sometimes there is nothing better than putting on a pair of clean, warm socks and curling up with a clean warm blanket. 
  3. The Ocean. I'm sure that related posts will come up about my love for the sea in the future.
Oh, and:

Wednesday, 29 June 2011

First Post!

I never know what to write when it comes to first starts. I have various journals scattered about my room, all empty because I don't know exactly how to start. But I am determined to make this work!
I'm not sure what I intend for this blog to be. I want to share my experiences with others, because I believe the best way to learn is from each other.
Why is my blog called, "Life as a Zebra?" Because of the following quote:
"When you hear hoof-beats behind you, think horses, not zebras."
 This is a direct analogy of my life! Why?

  1. I am currently on the way to a diagnosis of Ehlers-Danlos Syndrome (Type III). Ehlers-Danlos Syndrome is called a "Medical Zebra" because the syndrome is very uncommon - and just like a zebra, EDS is not something you come across every day! 
  2. Zebras have their own unique patterns - not one is quite the same.  And you will not come across anyone who is quite like me!