Raising awareness about chronic pain, challenges that relate to access to healthcare for pain management, social functioning, missed education, isolation and depression, is of paramount importance. If you would like to share your story, please submit to: Sandy@theilcfoundation.org
Visit the Dominic Boivin page to learn about his story.
End the Hurts
I’m Heather- Justin’s mom- a.k.a. Dr. Google. I pray our nightmare is a thing of the past. It is so encouraging seeing the strides made in understanding and treatment yet we have a ways to go. Each of us has the opportunity to change the journey for the next Justin. How many “Justin’s” are travelling this path alone- parents who either don’t have time, education, language barriers, have given up, or just believe what they are being told by countless in the medical community is fact- a “behaviour” or “in their heads”. The amount of time, energy, and money this journey takes is staggering; it affects the whole family. If only I had known then what I know today; looking back is so very painful.
Having the disorders is hard enough; defending yourself unimaginable. When body image is so important- we parents have to pick apart every abnormality just to get someone to believe-ability to put both feet behind your head is not just a party trick as we were told. When almost every system is affected a team approach is needed- the left hand must know what the right is doing. Residents need to learn but, for these kids, alongside those who know, retelling their struggles countless times is not healthy. Admissions brought a whole “new” group to the table. How many times we endured the sneers-“You’ve been to almost every one of our clinics.” Should that not have been a red flag? Imagine a Specialist refusing to give an opinion before your child speaks to a psychiatrist, or being told they believe it is a” behaviour” when your child is out cold on the ground, being told you don’t belong in the ER even when it takes 4 hospital staff to get his 6’7” lifeless body out of the bathroom. Your child doubled over with pain but no answers. Imagine your child being at such a critical weight 0.01 percentile and being told by some he was just “thin” and others admitting him to an eating disorders program only to find out his Pituitary was failing and he needed Steroids. I shudder to think where we would be if we had started the anti-psychotic road as some indicated. As time passed his risk increased- becoming too old for Pediatrics; too young for Adult care- left hanging in the balance. Can you imagine being desperate enough for answers, quality of life, or even life itself that you would leave your own country, your health care system, and put everything you own on the line? This has to stop.
I wish I could say these are isolated incidences; that others had not experienced similar, but I cannot. I applaud the ILC, their leadership team and volunteers – always ready with a warm embrace. To see the new families attend their first Peer Support- eyes wide- first time they hear a very similar journey. Finally they belong. Little ones laughing, braces, crutches, wheelchairs don’t matter- there is no judgement here. Young adults share journeys, offer support to each other, share a little laugh, or just hang out. This medicine invaluable. We must continue to move forward with awareness and education; with the difficult to Diagnose Disease Program- close these gaps, save these children and families from falling through the cracks within the healthcare system so that access to community based programs can be accessed.
I am so proud to say that this fall Justin has gone away to University despite insurmountable odds. He still struggles every day. Seeing the flash of his red power chair serves as a reminder of how symptomatic he remains. It was a ton of work getting things in place and his safety is at risk. But, as always, he chooses to live, to fight, to dream- NEVER say NEVER!
My name is Justin and I am now 19 years old. I have been diagnosed with a connective tissue disorder likely EDS Hypermobility ( although genetically my DNA points more to Brittle Cornea Syndrome), Dysautonomia-POTS and Vasovagal Syncope, Adrenal Insufficiency, and the list goes on…..to say that I have had a journey through the medical system is an understatement. For years I kept my medical struggles as a secret, labels I wanted no part of, but recently, I have shed my cloak of secrecy with hopes that the next “Justin” can follow a different path- one that includes a team of compassionate knowledgeable specialists from many disciplines- a one stop shop so to speak.
I first passed out at 3 and an abnormal EEG led to my first misdiagnosis- Epilepsy- treated for about 6 years. Migraine and bouts of extreme abdominal pain changed that to seizure/migraine disorder. Over the next few years, my symptoms have multiplied. Enduring countless trips to the hospital to virtually every clinic and through the ER multiple times is something I wouldn’t wish on my very worst enemy. My parents never stopped advocating for me , begging for someone to think “outside the box”, someone who believed “rare” could happen, that a “normal variant” isn’t normal if every test has multiple. Rare is a four letter word in our house!
Just over two years ago, I met Dr. Guzman-someone I now credit for changing and likely saving my life. Having seen a multitude of Specialists, I didn’t get my hopes up for answers but, within 5 minutes of explaining my symptoms Dr. Guzman announced that he thought he knew what part of my problem was- a Tilt table test was needed to confirm. It was the first time that I really felt hopeful in a very long time. The tilt test- I must say a little barbaric, confirmed his suspicions. Two minutes into the test I passed out, had a hypoxic seizure, and my heart stopped for 14 sec. -definitely proved that this was not a “behaviour” as was indicated by some. I had Dysautonomia- dysfunction of the autonomic nervous system- both POTS and Vasovagal syncope. I joke that I have POTS I don’t do POT (although increasingly it is showing great promise of relief for some). In case any of you might not know what POTS stands for its Postural Orthostatic Tachycardia Syndrome NOT Physical and Occupational Therapy as my Pediatrician suggested both he and his colleges would guess. It was at the follow up appointment that Dr. Guzman suggested we might like to get involved in the ILC – meet a lady named Sandy Smeenk- who he had recently been introduced to. We joined the ILC- it was the first time I met anyone who was similar to me. They knew exactly what I was saying and vice versa. It was there that I learned of the American Connection and a trip to the States was booked.
Although insomnia is a common complaint, that was definitely not my issue. I brought a whole new image to the idea of Sleeping Beauty. I couldn’t stay awake – sometimes sleeping 16-19 hours a day and waking fatigued. Between the sleepiness and overall nauseous unwell feeling; I couldn’t eat either. I fell to the 0.01% for weight and endured another few misdiagnosis- eating disorder and depression. Boost Plus calories became my new best friend but my health continued to decline. In October last year, I once again was taken to the ER- my parents frantic that I had slept 30 of 36 hrs- there I was tested for a whopping 19 Street Drugs- I was so sick I hadn’t showered but at least they knew I was clean- in a different way! Dr. Guzman to the rescue again- testing my Cortisol- and at Christmas 2012 after failing 2 ACTH Stim tests, I was diagnosed with Secondary Adrenal Insufficiency. I have since gained 50 pounds- I’m hungry, awake, still not depressed, and alive!
So what’s it like to live with all of this- quite simply it sucks- not much of a medical term but you get the drift. I stand a whopping 6’ 7”so believe me it’s a lot farther to the ground when your blood pressure bottoms out. When I should be out breaking curfew, I can’t stay up much past 10- I’m not “the life of the party”. I can’t walk far or stand long. Planning is just that – a plan but I never know if I will be able to do it. I’ve had to swallow my pride and use a wheelchair if I want to attend events- good days only. Compression hose are my newest fashion statement- I can’t even get them on without help. I can’t stand in the shower and on a bad day I shower in my boxers in case I need to call in the Calvary (a.k.a. my parents). My heart races, my blood pressure bottoms out, I’m dizzy, weak, no heat tolerance, no exercise tolerance, extreme fatigue, blood pools so bad it feels like my toes will explode, genetically, I must be quite a mess. And yet, I’m a far cry from where I was just a few years ago- housebound- and work hard to move forward.
This fall I have had huge changes in my life. I am living my dream of going to University. It isn’t the University I dreamed of, it isn’t the year I should have (needed a Victory Lap due to decreased course load), and I’m only able to manage 2 courses, but I’m doing it! I am in Residence and my new power chair gets me where I need to be. Easy; it is not!
I say it’s the cards I’ve been dealt but its up to me what I choose to do with my hand. Don’t get me wrong, if I could stack the deck in my favour I would in a heartbeat. Days when I can’t leave the couch are especially hard. Yet, I choose to make the most of it- EDS, POTS, SAI, and who knows maybe one day …. PHD- in Computer Science of course.