Monday, December 21, 2015

That One Doctor...

I'm sure every one of you regardless of your medical diagnosis have experienced a not so great doctor. It's unfortunate, but they are out there. Over the last 9 years I've seen 36 different physicians of varying specialties, in different cities and for very different reasons. There is one doctor who stands out in my mind for being less than a stellar guy.

When I was in my Grade 11 year, my Mom and I decided to make the trek down to the Mayo Clinic in Rochester Minnesota to be seen by some of the leading specialists in their regarded fields. I had been struggling with chronic headaches for 6 years at that point in time, and with no promises of finding and answer here, my Mom and I packed our suitcases to being this life changing journey.

Before I left for the Mayo Clinic, I was asked to keep a headache dairy (which I had done many times before) so the specialists there could determine if there were any cyclical patterns to my headaches. I kept track of everything: the number of hours I slept, what I ate, what exercise I did that day, the weather, my mood, how much water I drank, the characteristics of my headaches, any stressors I experienced that day, rating my headaches on the pain scale... I think you get the picture. I did this for almost 5 months before taking off on this new adventure, and I was confident that the neurologist I was going to see down there would have some answers for me.

I remember sitting in that exam room with my Mom, waiting for this neurologist that I hadn't met, but already admired. I held my headache diary in my hands, ready to answer any of the questions he had for me. I had already seen 4 neurosurgeons and 3 neurologists at this point in my life so I had a pretty good idea of what my appointment was going to look like.

We waited for well over an hour for this guy, which I regarded as something that was relatively normal since it had happened to me so many times in the past. When he whisked into the room he didn't bother to introduce himself, nor did he bother to make any small talk with me. His opening line was:

"So, what's wrong with you today?"

A little dumbfounded, I struggled to find my words. He sounded like he would rather be anywhere but in that exam room with me. I quickly explained my history to him, and told him that I was here because of my chronic headaches that nobody has been able to figure out. I remember handing him my headache diary, telling him I kept track of them for the last 5 months. He immediately laughed, and not like a snicker, but a full out laugh. He tossed the headache diary back at me, looked at me and said:

"You're such a Type A personality, I can tell you right now that's what caused your headaches. You've done this to yourself!"

Honestly, I couldn't even formulate words at this point. I was horrified. Humiliated. Angry. How dare he make those assumptions about me?! How dare he make jokes at my expense? It took me several moments to gather myself before being able to speak. I don't even remember what I said to him, but I do know I was trying to hold back my tears.

Throughout my appointment this neurologist took several phone calls, walked in and out of my room and rarely ever made eye contact with me. To be fair, I don't know what was going on in his life at this point in time. Maybe he was dealing with a terminal patient, maybe he had some family issues, maybe he was just having a bad day...we all have them, we are human! But how he was dealing with whatever was going on in his life made me feel extremely devalued. I felt like a file number, and not a patient. He was accusing me of causing my own pain?! Really? He made me feel like I wasn't being heard, he made me feel like I was just wasting his time... no person or patient should ever feel like that.

What 17 year old would electively choose to be poked, prodded, scanned and examined for almost 2 weeks while they could be at home with friends a family? What 17 year old chooses to miss weeks of school because of chronic pain, doctors appointments and tests? I know I wouldn't. He labeled me, before even knowing my story. He made assumptions, which drastically affected the quality of care he provided me. This. Was, Not. Okay.

I left his office that day feeling completely defeated. He honestly did nothing for me. Didn't give me any answers. He didn't even go over my MRI with me. He just told me "You're fine, apparently you need to engage in some stress relieving techniques." To be fair he did send me for an x-ray of my neck because he suspected the curve in it was "backwards".

My Mom was absolutely furious with the treatment I received, and took this issue to the physician who was overseeing my care. Within 12 hours I was booked in with a different pediatric neurologist, who was a complete 180 from the first guy. He listened, he empathized, he did every neurological test in the book, he took over 45 minutes to sit down with me and explain my MRI in detail. He was incredible.

I guess the point I'm trying to make here is, you're ultimately going to come across a health care professional (whether it is a doctor, nurse, paramedic, pharmacist, etc) who is going to treat you poorly. Unfortunately, it's inevitable. Not all medical programs teach compassion, and not every medical practitioner makes compassion one of their top priorities. But, what I'm saying is you have the power and the potential to change that! Take your health into your own hands and advocate for yourself! You know you the best, and if you know something is wrong find someone who will listen. Find someone who will empathize and understand. Find someone who isn't afraid to seek a second opinion, or run some tests. Find someone that you trust, because it is your health! You have all the power, you might just have to search a little bit to find your voice.

Have a good week everyone, and Merry Christmas!


Monday, December 7, 2015

Lyndon's Story

Hey everyone! Please take the time to check out my guest writer this week... Lyndon Demers! I met Lyndon through MBNF and he has graciously agreed to share his story with the group... so here it is!

HAPPY 28TH BIRTHDAY TO ME!  Hello, my name is Lyndon Demers and I am delighted to share my story on Courtney’s Blog, especially on my birthday.Thank-you to Courtney, the MBNF Support Group and all the readers for making this blog very successful.

After Courtney presented her story in October at the first MBNF Symposium, she mentioned or suggested to me I should share my story.  I agreed a few weeks later, and I asked to be a guest writer for December 7th, my birthday. So I had a few weeks to plan and write this story, but I couldn’t think about what words on paper like what I am doing now on December 4th.

I have lived in 5 provinces, and 8 cities throughout my life and been to many schools, left numerous friendships behind. The hardest move for myself personally was the move from Edmonton, AB to Portage La Prairie, MB in 2002.  Sometimes, I still call Edmonton my actual home but after being in Winnipeg, MB since 2003, Winnipeg feels more like home every day.

I was diagnosed with Neurofibromatosis Type 1 at the age of 3-years old. I have faced numerous learning challenges through Elementary, Junior High & High School, and yes, even college.  Back in Grade 1, my reading was average and I was held back a year. My writing/printing on paper was poor (probably still is) through school, I was lucky enough at each school in each city I have lived in, the school either have me use an in-class computer, which had a keyboard that connected to a computer and typed out my notes in a word document. Oh my, how technology has changed from the mid-90’s to 2002!!!  Teachers also supplied printed notes so I wouldn’t be distracted in class.

My first major surgery was at the beginning of Grade 6 (1999), the decision was to have the surgery on my Achilles Tendon, putting me in a cast rather in being in cast the following fall in Grade Seven (2000). Well, that plan failed, I ended up being in a cast the following year because I jumped of a ledge on the steps at my home and broke a bonne in the other foot because there was a wasp that was around me.  I was attacked by dozen of them a couple years prior to 1999, ever since then I have been terrified of wasps.

I have a tumor near my left eye, I have 2 surgeries to do a biopsy on it, in 2002 and in 2009.  Unfortunately, I think it is growing back again. From the time I was diagnosed until 2007, I never met one single person or family with Neurofibromatosis.  I started working at Walmart in 2004, and it probably was not till 2005 or 2006 when I started to deal with members of the public face to face.  The difficult part of it and to this day is sometimes still tough to deal with. Customers have always noticed my tumor, but yet they don’t know it is actually a tumor.  They think it is a black eye, the way some customers ask is tough to answer.  The toughest question to deal with,   “What does the other guy look like?” .The reason why it is tough to for me answer is, I don’t get into fights or go looking for fights.  The only fight I have been through and am winning, is the battle with Neurofibromatosis and also NHL video game fights.

So starting in 2007 was the start of a life-changing adventure.  I was able to go to my first meeting for MBNF, back when MBNF was a small group, but I met numerous families with NF including the DeGagne family & the Gregorash family. Their names are important for me to name at this time since they have had such a big impact on my life. Since 2007, I have watched the group grow and been part of an extended MBNF Support Group family, I have seen MBNF gone from a non-charity status to receive non-profit charity status.  I have shoveled for NF, done multiple NF Charity BBQ’s at Walmart which they have matched each time. I went to 2 NF Symposiums and been to numerous Run for NF events.  I have dated and lived with someone with NF.  Joining MBNF Support and becoming a director and having provincial monthly law for Neurofibromatosis, are just some of things that have changed my life in the last almost 9 years.  At the first MBNF Symposium, I was honoured with a volunteer appreciation award, which I was very honoured to accept.  
I love being part of the Manitoba Neurofibromatosis Support Group, we have a great bunch families and friends and I am looking forward to next 8 years.   I would like to thank my family and friends for supporting me.   Thank-you to Courtney for coming to Winnipeg and sharing your story.
This story is 28 years in the making! Cheers to next 28 years!

Thank you for reading my story!  Oh yeah! This just another surprise as no one knew except Courtney, I was putting up my story on Courtney’s Blog!

I hope you all enjoyed Lyndon's story, please comment, like or share this post to show your support!

If you're interested in sharing your own story on Courtney's Column like Lyndon did, comment below and I will get in touch with you!