Just begin at the beginning…

Go figure… I spent all day with my mind buzzing with ideas, thoughts swarmed in my little sleep deprived brain and I was so eager to get home and hit the keyboard that I could hardly stand it.  But now, here I am, sittin’ on my couch, dinner is bubbling away on the stove, and I am lost for words.  You took the time to pop in on the maiden voyage of my little blogging venture, and I have been staring at the screen for the better part of an hour now.

The truth of the matter is, until just this moment, in all this time, I have never put my story out, in full.  Of course, I have confided in friends and family, I am fortunate enough to have some amazing people in my life who have stood by me through it all… but I can honestly tell you that I have NEVER just started at the beginning and gone straight through to today.  Seeing as how you have taken a minute to check out my site, I figure I owe you an explanation about why I started this all. I’m sorry, it’s a long one, but if even one of you reads this and can relate, well then, this time has been worth it.

Flash back to early 2009 – I am in my mid 20’s, I’m engaged to be married and am planning a big wedding for the fall.  I have amazing family and friends and am pretty sure I am on top of the world.  Except… I am not healthy, and if you press me, I will admit I have been feeling like something is wrong for years.  It’s mostly my digestive system that causes the issues, cramping, bloating, nausea, and lately, horrible heart burn that gets so bad that the next day it hurts to swallow.  My mouth is full of canker sores all the time, and pretty much anything I eat goes straight through me.  That is the worst part – not just because it’s embarrassing, but because it often comes out of nowhere… no warning, no heads up, just a sudden cramp followed closely by a frantic sprint to the nearest bathroom.  I am constantly tired and achy, my whole body hurts, especially my major joints, but I don’t link it all together, after all – I’m planning a wedding, the stress is just getting to me and I’ve always had a ‘nervous stomach’, or so I am told.  I don’t want to talk about it, it’s super embarrassing to discuss an upset stomach and I have been doing some googling, pretty sure it’s something to do with Gluten, that’s a thing now, right?  I even go to the doctors and tell them half truths, choosing my wording specifically to fit the symptoms I have read about in private on my laptop at night while my fiance is at hockey or walking the dog.  They don’t even give me a blood test, we all just smile and nod and agree that avoiding gluten is worth a shot, and I head promptly to the grocery store. Many hundreds of dollars in GF products later, including at my own wedding, I am actually starting to feel better and I forget all about it… for awhile.

Move to next fall, I have learned that avoiding gluten is way more difficult than I originally thought, do you know how much stuff contains that crap?  It’s also extremely expensive and has become a lot of work to prep two meals, one for me and one for him – and it’s not even working anymore.  I am back to spending a lot of time in the bathroom, there are many days at work where I’m in there for an hour or more at a time, especially after a meal.  You could often find me doubled over on the toilet, in pain, silently pleading with the other women in there to hurry up and leave, holding my breath, tapping my toes and debating whether or not I should tell someone that these days it’s mostly blood that I leave behind.  I’m a horrible employee, I am sick a lot, constantly exhausted, fighting some infection or frankly just too depressed to get out of bed in the morning.  I hardly ever leave the house anymore, the constant anxiety of not knowing when my body will decide to betray me again and send me frantically looking for a bathroom is too much.  That is by far the worst part, that shock when you realize your body is going to turn on you – too many times I had to park illegally outside some fast food establishment and shuffle, knees together, awkwardly hunched over, to the bathroom, praying an employee didn’t stop me.  Here I was a grown woman, facing the daily realisation that today might be the day I don’t make it… and unfortunately, it happened.  I even started keeping a roll of toilet paper in my car, just in case.  When I did leave the house, I would carefully plan the route, stayed off major roadways and stuck to roads with lots of quick stop establishments.  Eventually, he started going out a lot without me, not that I could blame him, I had ruined so many nights out before they even started by suddenly pleading to pull over at the Tim Horton’s on the corner – I kept a stash of loonies in my purse just in case I had to buy something before I could use the facilities, or, to ease the guilt and embarrassment because I was sure everyone had seen me go in and not come out for a long time.  I stopped taking care of myself, my skin was super dry and covered in patches of eczema and my face was so red all the time I gave up on makeup, my hair was stringy and fell out in clumps, so I rarely did anything but tie it up wet.  My hair is always wet these days because I am showering so much, I just don’t feel clean… and honestly I have sores now from so many trips to the bathroom.  When I do go to work, I come home and immediately sprawl on the couch… we don’t talk much anymore, I don’t have anything good to say these days, the depression is crippling and the anxiety of leaving the house now is too much for both of us.  I am not careful about what I eat, everything makes me sick so I just don’t care anymore – it’s safe to say the weight of it all was consuming me, one year into my marriage, I am a burden.  My joints feel like they are loaded with cement and nails, I can barely walk up a flight of stairs without getting dizzy and going down is so painful I wince with each step.  It is my Manager that first pulls me aside and tells me he’s concerned about me – together we decide that maybe I should take a small leave to figure it out, I reluctantly agree because I am so tired I just want to go to bed.  The reality sets in on the ride home… I must look as bad as I feel, and I assure you, I did.  The next morning, I can’t make it down the stairs from our bedroom to the kitchen and my husband has had enough, he basically carries me to the car in my pajamas and we go straight to my doctor’s office.  He insists on seeing the doctor, the receptionist takes one look at me and drops her protest, within minutes we are in the exam room, I’m answering some very awkward questions while my husband paces in the corner, adding extra comments when he thinks I’ve left something out. He glares when he hears me admit that I have been passing nothing by mucous and blood for days now, and I realised I hadn’t told anyone about that part, not even him.  I am sent home with colonoscopy prep instructions and an appointment to come back to the hospital first thing the next morning.

That night, I slept like a baby, for the first time in months… there was a possible answer here, there was a name for all  this.  He had said it once quickly, almost under his breath, then louder as he flipped through my chart reviewing the dozens of pages added in the last few weeks.  Crohn’s.

The following day is a blur, I hadn’t had anything to eat for almost 24 hours and I was terrified.  I was being “slipped in” when the GI Doctor was free, so I laid in the prep room of the GI Department for almost 5 hours, alone, with an IV in my hand, watching people go in awake, come out sleeping.  When my turn finally came, the sedation worked it’s magic quickly and I, thankfully, remembered very little of the process.  The man I would come to know as my GI Doctor then brought my still slightly sedated self & my husband into his tiny little hospital office, looked me in the eye and simply said “without a doubt, you have Crohn’s Disease”, he then looked at my husband, passed him a script for what he assured me would “help get back to normal” and told us to call his office in the morning to make an appointment for 2 weeks later.  Then he walked out.

That script was for a popular treatment of flare symptoms – a steroid and immune suppressant combo that I would grow to hate.  But regardless of how I feel about them now, in the days and weeks that followed, those little pills literally saved my life.  My new life, as a member of a not so elite club, with more and more members every year – my life with an Irritable Bowel Disease or IBD, my life with Crohn’s Disease.

There is plenty of time to talk about the in between, and I will share more, can’t spill it all at once, or you won’t want to come back.  It’s been shockingly difficult for me to write this out.  I have cried a little bit, including when I accidentally deleted like 3/4 of my work (what’s up, first time on WordPress)… But, spoiler alert, so far, I have made it through alive!  It’s been a few years, one divorce, one or two job changes, a new relationship, some lessons learned and a flare or two since, but I’m still standing.  I have Crohn’s Disease, but it does NOT have me.

Where did this urge to spill my guts online come from?  Well, yesterday I spent some time with an amazing group of people, people just like me… I got to attend the first session of GUTS 2016, hosted by Crohn’s and Colitis Canada and I left feeling inspired and motivated.  To me, it’s ALL about us sticking together, working as a team, to get through this life together.  I don’t care if you have IBD, you know someone who has it (and odds are good that you DO, especially here in Canada), or you just found me by accident and have miraculously kept reading, I want you to feel inspired to do something.  I want to use this little platform I have created, and my Instagram account (@gutcheckyyc) to help.  I want to motivate, I want to help, I want to make you feel less alone, I want to make you smile.  I want to talk about working out, I want to talk about lifting weights and how much I love it.  I want to talk about eating, and my love/hate relationship with food and health, I want to talk about living with Crohn’s as a productive member of society, I want to talk about lots of other stuff!  What do you want to talk about?  Tell me!!  I look forward to chatting with you, and filling you in on the rest of my story.

Until Next time!

 

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3 thoughts on “Just begin at the beginning…

  1. You are such an inspiration. I admire your courage to take the leap to share your story and encourage others to live a fulfilled healthy life, whatever that may look like for each individual. Kudos to you and I look forward to reading more.

    Like

  2. I’ve known you for quite some time now. This made me cry, thinking about all the life events we’ve shared through the past few years, and now knowing that you were one of the bravest soldiers I’ve ever met. I had no idea. Thank you for being brave enough to share.

    Like

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