Review of the 2011 Graves Disease Conference

These are my follow up notes from the conference I attended in Boston, Massachusetts on November 4^th-6^th 2011 put on by the National Graves Disease Foundation
 
 For extensive information on Graves Disease;   http://www.ngdf.org/
Imagine stepping into a world where someone from the another country who you have never met was able to finish every one of you’re sentences within minutes of knowing each other, almost as if they could read your mind. Don’t think its possible? Then you probably don’t have Graves Disease & you definitely haven’t been to a conference about it before. What I learned at the conference was that while Graves is a very individualized condition & everyone has a different experience; many of the symptoms are the same- no matter which course of treatment you receive. Being around people you don’t have to explain yourself around is liberating. While friends and family back home sympathize, its hard to fully understand the mental & physical manifestations caused by Graves without going through it themselves.

I noticed a common theme around the conference was bitterness, some anger, a lot of confusion & the feeling of “why me”. During this last year I never once wondered why I got this disease. I believe everyone has a life course planned out for them & it was written in the stars long before you even had a fighting chance to change it. I had a few days in hospital isolation where I felt sad about the situation but I never had the thought of “why is this happening to ME”. There are much worse things that can happen; I see them at the medical clinic I work at daily. I also noticed an immediate sense of friendship among attendees. The comfort of being around someone else that knows exactly what you feel on a daily basis & can comprehend the pain you have experienced in the past is comforting.  I won’t get into the symptoms of Graves in this post because if you have been following my Blog from the beginning, you have already seen a glimpse into the daily struggle of Graves patients.

We got broken up into groups of about 10 and shared a little about our life stories. In the USA (we were the only Canadians) the doctors there mostly use radioactive therapy to melt away the thyroid so there were very few people there who had gotten their thyroids surgically removed like myself. I had a lot of people asking me about the surgery because it seemed a little ‘foreign’ to them. I noticed everyone was very stressed about their health situation. They talked about mood swings (a common symptom associated with Graves) and how they didn’t feel like themselves. I have stayed very calm for the most part during this whole process. The best advice I ever read which I have never forgotten through the years was; “There is no point stressing over something you can’t change. Whatever is supposed to happen is GOING to happen & no amount of worry can change the outcome.” I think that’s how I survived this whole process staying seemly sane. I didn’t get mood swings because I didn’t let myself. I also believe I’ve made it through the up’s & downs of the disease by simply blocking it out of my mind. Having it right in your face all day long at the conference & seeing patients with eye symptoms worse than my own was upsetting. Witnessing first hand where the next stage of Graves is going to take put me on edge. I already have panic attacks regarding the treatment or surgery required on my eyes that I needed some down-time to reflect at the end of each day in Boston to mentally prepare myself for the future.



The cost of attending the conference was tremendous but the value of the information was priceless. Having access to speak with some of the top doctors in the field was amazing. The most important thing I learned all weekend was:
“Be your own advocate.”

‘Good’ treatment for Graves is available in Edmonton; but ‘GREAT’ treatment is available elsewhere. There was a lady at the conference who had such bad eye symptoms that doctors had told her to put an eye patch on and live at home because they couldn’t help her. She decided that wasn’t a good enough answer after living confined to her home in shame for 2 years so she scouted out different doctors from the Kellogg Eye Center where they did multiple surgeries & she looks beautiful now. I learned that our resources in Edmonton are not the best for the eye issues associated with Graves considering we only have about 3 doctors thoroughly educated on proper patient care for the disease. When I told the eye specialists at the conference that I’m on a 10 month wait list in Edmonton for the same type of patients they see in their area; they were astonished. Sitting & waiting on lists is simply not acceptable after seeing how great American doctors take care of patients with the same problems. It is also not acceptable because if left un-monitored & un-treated; there is risk of going blind over time. The specialists in Boston assured me that with the severity of which the speed of the eye disease progresses; the waiting period in Edmonton is a completely unreasonable.  While this might seem like depressing news, it is quite the opposite to me. This is because I learned to feel confident in saying “no” to a treatment that I don’t feel is right for me & my needs (since Graves affects everyone differently). I feel confident in pushing doctors to give me the care I deserve and to start looking at my options elsewhere whether it be out of province or even out of the country.

 I was told by an Edmonton doctor that I would need multiple steroid injections to treat my eyes ASAP; but after attending the conference I realized that no one could possibly make that decision without getting a proper X-ray scan of behind the eyes to see damage the pressure is causing. The steroids are supposed to reduce early swelling around the eyes to stop the Disease from progressing; but what if you don’t know at which ‘stage’ your eyes are in? Anyone who has seen me recently knows, I look different than I used to. To this day; I have never had a doctor in Edmonton mention the use of getting an X-ray to see exactly what is happening behind my eyes, let alone send me for the test.. The scan would show if;
1) The fat has expanded behind the eyes (that’s what usually causes the bulging) or
2) If it’s the muscle that’s expanding.
If its muscle, it’s a much more complicated surgery to remove bone from your skull, allowing room for the eyeballs to expand into. If its fat, patients need to get an ‘eye decompression” surgery.  So to be injected with steroids that have a lot of dangerous side effects without accurately knowing the current condition of my eyes would be reckless.

So how was I so lucky to go on this trip? Because I have a family who cares and wants the best for me. My dad played modern day superhero & offered to pay for the cost of the entire trip so I could go learn from the best of the best in the field. More importantly; the goal of the experience was to simply ‘meet people who understand’. I met some truly wonderful people who live thousands of miles away but will always be held close to my heart & at the top of my thoughts. I gave out little cards during the conference with my contact information so we can always stay in touch online & I know some of them are reading this right now. So; Thank-you for the hugs, for being so honest & for sharing your deepest thoughts with me. I am grateful to have met such wonderful people; although I truly wish it was under better circumstances.

I am currently reviewing my options for treatment of my eyes so the next blog entry will hopefully be a post-treatment success story.  Unfortunately, recent test show that I may have a more complex heart issue & more testing is being done in the coming weeks which I will keep those who are interested up to date on.

Thank you to my Dad for giving me the opportunity to have participated in such a wonderful weekend & to my Mom for accompanying me throughout the entire conference. Love you!
-Rayanne

 
     
Me sitting on a turtle in a Boston park!

"There are 3 things you cannot recover in life. The moment after it's missed,the word after it's said & the time after it's wasted."

Someone wise once told me that when you are sick, you have two

choices. “You get bitter, or you get better.” If you’re like me... you choose to

get better…but like most things, it sounds easier said than done. For

those who know my story & have been following me throughout my ‘journey’;

you know I have something called “Graves Disease.” It has been almost a year

since I have been diagnosed. I was listening to the radio the other day, when I heard the lyrics

“I wouldn’t trade the pain for what I’ve learned” …

So my friends, this is what I’ve learned:

For anyone’s whose been sick, and I mean life changing sick, you will

understand my words perfectly, but for those who…like myself until recently,

believed nothing bad could ever happen them- this will be a much more eye

opening read. I received what doctors believed to be an ultimately lifesaving

surgery when they removed my thyroid to control my constant, dangerously high

heartbeat. I feel like they didn’t just ‘take’ my thyroid. They took away what I

thought was a perfect world. They took my sense of adventure, they took my

dreams and they took my ability to believe anything was possible. The beautiful

trusting world I knew suddenly became cracked and dark looking. People

go about their lives trying to plan every detail about their future, but what

happens when you suddenly get sick and you have to quit your job, plan your day

around dozens of pill doses to keep your heart functioning normally and spend

your days in & out of hospitals?

Back in February, I was admitted to the hospital where I spent nearly a month in isolation

and in black & white terms- it could, and in some cases have been deadly. I had 600 white

blood cells per micro litre trying to keep my body going when I should have had 4,000-11,000 (per

micro/L). If I caught any other sickness floating around in the hospital air, I

would not have recovered. I think that was about the time I really started to worry.

When you’re sick & you don’t know what is going to happen to you, and no one else knows either…

you go into protective mode to those around you. They are anxiously and carefully

trying to piece together exactly how to say things to you without upsetting you,

and in my case…. I, in return tried to make other people laugh as much as I

could to lighten up the mood. If we pretended we knew it would be ‘ok’, it would

be… Right? The most bittersweet moment of my stay was when my Dad told me he bought

me tickets to Taylor Swift in August/2011. Although it was some of the motivation I needed

to get better & out of the hospital, I didn’t know for sure some days if I would get to go

home. Several months & one daddy-daughter concert later… I found out what I

figured to be the worse was just a warm up of the never ending powerhouse of

medical problems called “Graves Disease.”

After surgery, my weekly or bi-weekly blood tests turned into monthly.

If  you’re thyroid is removed, you have to take daily pills to supplement your TSH hormone level.

From July of 2010 to September of 2011, I had not had a normal blood thyroid level. I

found out the effects on your skin when you’re thyroid level isn’t right; my

face started looking like a 14 year old boy with the daily breakouts. I was

always either so tired it was hard to get out of bed or so awake I couldn’t

sleep… Depending on how high the dose of ‘Synthroid’ the doctors had given me

that month was. On September 7th of this year, I found out for the first

time in over a year, it had finally levelled itself out to a safe number. I am in the process of finding a nice frame for the piece of paper revealing the results. It’s amazing how such a

little accomplishment can mean so much in the big picture of things.

There are two theories that doctor’s decisions are split on for treatment of

Graves. One is to melt away the thyroid with radioactive iodine; the other is to surgically remove it. The reason being is that for certain patients, like me, the radioactive iodine

treatment can cause severe eye symptoms later on down the road to recovery.

My time was split under the care of two different doctors at two different hospitals who had very different beliefs on the appropriate treatment. One doctor made me drink radioactive

iodine on three separate occasions pre-surgery that my body is paying for now at

one hospital before being transferred to another.

For me personally, this has been the worse part of this illness.

The pain I feel in my eyes daily is virtually indescribable to someone who hasn’t gone through it.

The feeling of having so much pressure from behind your eyes that it protrudes them forward is incredibly painful. My vision is decreasing, I get double vision, I have severe sensitively

to light and worse of all, when I look in the mirror… the person I used to see

staring back at me is gone. I wear long false eyelashes every day to try and balance

out the size of my eyes now. The only way to fix this problem, as there is no ‘cure’, is to get

a surgery to either take out the eyeballs themselves (or move them & put a tube behind them) to
scrape/suck out the extra tissue that is growing behind the eyes and put them back properly or get a bone removed from your skull to allow room for the eyeballs to expand.  These the next surgery's the doctor’s told me to prepare for.
None of the other surgery’s scared me until this one. I don’t

think an explanation is needed either; just the mental image of it resembles a

scene out of a gory horror movie.

The psychological part of having Graves has been equally hard to deal with.

After going from feeling like the world is yours for the taking- to just thanking the ‘big guy upstairs’

that you are here to see the sun rise in a matter of months; you’re brain starts playing

tricks on you. Always feeling a sense of 'loss'; I find myself calling or asking people obsessively

where they are going and when they will be back. I keep things that had any meaning to me

during hospital visits like the admitting bracelets or cards given to me. I have

never kept a card in my life except the ones from this year. I hate being alone

now and spend a lot of time at home as it is extremely hard for me to be out

around people my age who have never had to go through something like this in

their lives because I don’t feel like they can’t relate to me anymore. This

process aged me mentally 20+ years and the paranoia I feel daily that I will get

sicker and end up back in the hospital tortures me. After

being freed from the invisible prison bars of a hospital, you immediately feel

appreciation for absolutely anything & everything. The appreciation gradually (but never fully)

disappears & the uncertainty of the future overshadows the beauty of each day with the discovery a

new health problem associated with Graves Disease.

I can’t tell you enough how grateful I am for the family I have. My sister always goes out of her way

to put a smile on my face, my parents have been the shoulder I needed to cry on & they

have spent thousands of dollars on my pills in the last year alone. Most

recently, my Dad found out that the American Graves Disease Foundation holds a

conference every year for patients and top doctors studying Graves to get

together and learn from each other. In November of this year I will be

flying with my mom to Boston to try and learn what to expect will happen to me

in 1 year, 5 years or 10 years from now. Never in my life did I think attending

a medical conference all weekend for 10 hours a day would be exciting; but then

again I never thought ‘this’ would be MY life. If there is anything I hope readers take

from my blog is that if you are blessed with perfect health, listen & ponder

the words of someone who has seen both sides of the fence;

If you feel like you are having a rough day, take a few seconds and think about all the

amazing things you have to be thankful for. If you get to go home and sleep in your

own bed, be thankful because I assure you there are family’s everywhere sleeping

slumped over in lime green ‘pleather’ hospital chairs watching their loved ones

battling far worse than I have dealt with to date. If you are able to go home

& give your parents, sisters, (even pets!) a hug- embrace that moment because

there will come a time that you don’t have that luxury anymore.

One of my favourite quotes is;

“Live your days as if they were numbered, because they are.”

I believe you should never regret something that once made you smile and that there

is beauty in every situation- you just have to choose to see it. Not every day is going to be sunny

& wonderful, because if it were… we would not be able to appreciate the good

times when things don’t go our way. I didn’t always make the best long term

decisions and my life path lead me to this illness that I didn’t understand

until recently. What I lost in creating fun memories with friends over the year,

I gained in wisdom that I can hopefully share with someone else. I

found out that when times get rough, the people that love you will always be

there no matter what and you should remind them as much as you can just how much

that means to you. So to my family; Marty, Kim, Lauren, Jeremy, my extended

family & the many friends who have been there to put a smile back on my face

during my darkest days… This blog entry is to celebrate YOU & all you have

done for me this year & beyond.

I would not have gotten this far

without you. I love you.

I will keep updating on my progress every few months.

Thank you for taking the time to see a glimpse into the world of

“Graves Disease”.

-Rayanne

"Crying doesn't mean you are weak; it means you have been strong for way too long"

Welcome to  one of the first ever ‘patient created’ Blogs available on
the Internet  describing my battle against Graves Disease. Once diagnosed, I
discovered there  was very little information available for people like me to
read about ‘real  life’ stories instead of trying to dissect the important
information hidden  between the copy & pasted Medical text books online.
Also, many of the  people in my life have been diligently asking about my ordeal
over the last year & I would now like to share with you a detailed account
of not only the  Disease itself but the bumps along the long road to my
recovery. It is broken up  in the time frames of when the Disease progressed as
well as the much deserved “Thank-You’s” at the end of the Blog. All information
is 100% authentic and real  accounts of my personal struggle with Graves Disease
& Supraventricular  Tachycardia.

Graves' Disease
Source-Wikipedia
Graves' disease is an autoimmune disease where the thyroid is overactive, producing an excessive amount of thyroid hormones (a serious metabolic imbalance known as
hyperthyroidism and thyrotoxicosis). This is caused by auto antibodies to the
TSH-receptor that activates that TSH-receptor, thereby stimulating thyroid
hormone synthesis and secretion, and thyroid growth (causing a diffusely
enlarged goiter). The resulting state of hyperthyroidism can cause a dramatic
constellation of neuropsychological and physical signs and symptoms. Graves
Disease is the most common cause of hyperthyroidism in children and
adolescents,  and usually presents itself during early adolescence. It has a
powerful  hereditary component, affects up to 2% of the female population, and
is between  five and ten times as common in females as in males. Graves’ disease
is also the  most common cause of severe hyperthyroidism, which is
accompanied by  more clinical signs and symptoms and laboratory abnormalities as
compared with  milder forms of hyperthyroidism. About 25-30% of people with
Graves' disease  will also suffer from Graves' ophthalmopathy (a protrusion of
one or both eyes),  caused by inflammation of the eye muscles by attacking auto
antibodies.  Diagnosis is usually made on the basis of symptoms, although
thyroid hormone  tests may be useful. However, Graves’ thyrotoxicosis often
gradually  affects the life of the patients, usually for many months,
but sometimes years,  prior to the diagnosis. This is partially because symptoms
can develop so  insidiously that they go unnoticed; when they do get reported,
they are often  confused with other health problems. Thus, diagnosing thyroid
disease clinically  can be challenging. Nevertheless, patients can experience a
wide range of  symptoms and suffer major impairment in most areas of
health-related quality of  life. There is no cure for Graves’ disease. There
are, however, treatments for  its consequences: hyperthyroidism, ophthalmopathy
and mental symptoms. The  Graves’ disease itself - as defined, for example, by
high serum TSHR-Ab  concentrations or ophthalmopathy - often persists after its
hyperthyroidism has  been successfully
treated.

Supraventricular Tachycardia
  Source-Healthlinkbc.ca
Supraventricular  tachycardia (SVT) is an abnormal fast heart rhythm that starts in the upper chambers, or the atria, of the heart. ("Supraventricular" means above the
ventricles, "tachy" means fast, and "cardia" means heart.)Normally, the heart's
electrical system precisely controls the rhythm and rate at which the heart
beats. In supraventricular tachycardia, abnormal electrical connections cause
the heart to beat too fast. Typically, during supraventricular tachycardia
episodes, the heart beats faster than 100 beats per minute. Sometimes the heart
beats as fast as 300 beats per minute. With supraventricular tachycardia,
patients have palpitations, an uncomfortable feeling that the heart is racing
or  pounding. Patients may also notice that their pulse is rapid or see &
feel  the pulse pounding, especially on the neck, where large arteries are close
to  the skin. Other symptoms include feeling dizzy or light-headed,
near-fainting or  fainting, shortness of breath, chest pain, throat tightness,
and  sweating.

Early February/2010
I was moving some really heavy items out of a
storage  bin of a then-boyfriend while he was overseas. I knew within days after
the  lifting that the new pain I was feeling wasn’t normal. I went to the
Doctor’s  and got an ultrasound requisition to check on the constant dull ache I
felt all  day long in the crease of my left leg. Not long after, I got news back
that I  had an Inguinal Hernia. As I sat in the doctor’s office;
I was  informed that it was very uncommon for girls to get this type of
hernia, and I  would definitely need surgery. At this point in time, I was
working at another  Doctor’s office & I brought this information to the
attention of one of the  Doctors I worked for and begged for a solution to this
problem only days after  finding out what was wrong. He sent off a referral
letter and I waited anxiously  for weeks to hear back for an appointment date. I
kept going on with my life as  normal, but I was used to being on my feet all
day and slowly every day the  nagging pain was getting worse. The hernia was in
the crease of my leg and by  the end of everyday it was swollen and sleep was
becoming my best friend.  My  work was a really busy clinic and I was working
10-12 hours day 5 days a week  and some Saturdays. All I did was work and sleep.
In my case; the pain from my  hernia sent me to the ER a handful of times since
there is always a worry of  getting a ‘strangulated’ hernia (where it tries to
fix itself and closes up over  the intestines). That was a type of problem I was
always urged to get checked  out if I thought it was happening since it would
require emergency surgery.  Luckily in my case, every time I felt something
wasn’t right; it was always  fixable. Finally, about a month later I got an
appointment with a surgeon, and  at last, a surgery date about 4 months later.


Inguinal  Hernia
 Source- Wikipedia
An inguinal hernia is a protrusion of abdominal-cavity contents  through the inguinal canal. They are very common (lifetime risk 27% for men, 3%  for women), and their repair is one of the most frequently performed  surgicaloperations. In the case of the female,
the opening of the superficial  inguinal ring is smaller than that of the male.
As a result, the possibility for  hernias through the inguinal canal in males is
much greater because they have a  larger opening and therefore a much weaker
wall for the intestines to protrude  through. Hernias present as bulges in the
groin area that can become more  prominent when coughing, straining, or standing
up. They are sometimes painful,  and the bulge commonly disappears on lying
down. The inability to "reduce", or  place the bulge back into the abdomen
usually means the hernia is 'incarcerated'  which requires surgery to correct.
Significant pain is suggestive of  strangulated bowel (an incarcerated indirect
inguinal hernia).As the hernia  progresses, contents of the abdominal cavity,
such as the intestines, can  descend into the hernia and run the risk of being
pinched within the hernia,  causing an intestinal obstruction. If the blood
supply of the portion of the  intestine caught in the hernia is compromised, the
hernia is deemed  "strangulated" and gut ischemia and gangrene can result, with
potentially fatal  consequences. The timing of complications is not predictable.
Some hernias  remain static for years; others progress rapidly from the time of
onset.  Provided there are no serious co-existing medical problems, patients are
advised  to get the hernia repaired surgically at the earliest convenience after
a diagnosis is made.

July 16th/2010
I woke up after  surgery in what felt like a horror movie. Before surgery if you have
contacts or  glasses, they take both away and leave it in the room you will
return to  afterwards. When I first opened my eyes all I could see through
squinting my  eyes was the hazy bright white lights reflecting off the walls and
rows of  people also recovering from the surgeries they just had. It was so
creepy. All I  could hear where the moans of people in pain and heart monitors
steadily  beeping. I grabbed a Nurse’s arm that came walking near me and asked
“How big  did they cut me”? She replied, “One inch”. I think this was a tactic
to keep me  calm because when I finally got wheeled out of her care and into a
room; I  checked... The incision was just less than 5 inches. After a series of
needles  post surgery, I was released the same day. I can safely say out of
everything  this year, that exact moment was the worst pain I have ever been
through in my  life. Getting up out of that bed was excruciating. Going home I
had tears in my  eyes the whole way, every single bump in the road felt like the
scalpel was  still cutting me over & over.  I wondered if the experience was
just as bad  for everyone. I was about to find out something didn’t go as
planned in my  surgery at a follow up visit.

The second day after surgery,
I was still  throwing up multiple times an hour and couldn’t keep a
single pain killer down.  Not being able to keep food down and having an
incision of that size made me  think “This is exactly what hell feels like”. I
got driven back to the hospital  and was told even though I was freshly cut
open- I would still have to wait 8  hours to see an ER doctor, so my mom drove
me over to the doctor’s office I  worked at and put me in a wheelchair to bring
me to the 3rd floor office. I was  given a prescription for ‘Oxycontin’. I tried
them at home later that day with  the same result as before- getting sick. Since
the anaesthesia from the surgery  had long worn off (a common reason for
nausea), and the multiple pain killers I  had taken where making me feel worse
than ever; I made the decision to heal the  rest of the process by not taking
any more painkillers. If I told people that,  they cringed. The look on their
faces made me feel worse. Seeing my family and  friends feeling so helpless in
the situation, I tried to sleep as much as I  could so I would feel like less of
a burden to them. A few days had to pass  before I could comfortably have
visitors again because laughing or even coughing  was awful. I had to take
almost a month off work to recover. At a follow up  appointment I had a doctor
tell me that during surgery a bunch of nerves got  severed in the process that
don’t normally have to be touched. As with all  surgeries, sometimes things just
don’t go right but you have to take the risks  anyways. The best way I can
describe nerves growing back to someone who hasn’t  been through that is; the
feeling you get when your foot is so “asleep” & tingly that when you hit it
on something and you get that shockwave of pain for  a few seconds until the
blood flows back into the area and your back to  normal... Except mine didn’t
get normal again for months. It constantly felt  tingly and on fire. This blog
is being written in March of 2011 and I can say  it’s improved but it’s still
not healed completely. Within 4 months after  surgery the feelings started
slowly coming back to the area around the cut. At  that point I was used to not
being able to feel, even touching the area, about 4  inches above and below the
incision. Right now, it’s at about 2 inches. Slowly  the nerves are growing
back. Post-surgery I started being active & on my  feet more and eventually,
went back to work with limited hours. Once I thought I  was getting back into a
routine in my life, I was starting to feel ‘normal’ again. Little did I know my life was about to do a complete 360  in a matter
of weeks.


2:07AM July 19th/2010
I will never ever forget that exact moment.
I woke up in my bed sweating and  gasping for breaths of air. It wasn’t that I couldn’t breathe because I wasn’t  getting enough air, it was that my chest was so tight that even trying to  breathe in was like hundreds of knives cutting me with every breath I took. My  heart was pounding faster than I had ever felt.  Immediately, I knew something  was
seriously wrong. I had no time to call anyone. I wasn’t living at home so I  got
in my car and drove as fast as I safely could.  When I got admitted to the
hospital my heartbeat was at 188 beats a minute. A normal heart beat if your
resting in bed is around 88 beats per minute. The nurses wouldn’t even let me
walk to the room I was put in after they took my pulse and blood pressure. They
got a wheel chair, and admitted me as a patient right away. I got stickers for
a  heart monitor put all over my body. I ended up finding them for the next few
days after. After everything was hooked up, a team of doctors & nurses
studied me and asked me multiple times if I had done any drugs/what kind. I
understood them asking me because I’m young and it’s unusual for someone to
have  had that happen to them in those hours of the morning. I told them I was
sleeping and assured them over and over I had no drugs in my system of any
kind.  I’m sure they didn’t believe me because they sent a kind nurse in my room
after  the intimidating doctor that had been grilling me left and she whispered
“You  can tell me if you did any drugs, it will help you in the long run”. Blood
test  results ruled out any drugs or obvious reasons this was happening. It was
about  two hours into being at the hospital that I knew I was going to be there
for  awhile, so I sent a text to my parents “In hospital, having trouble
breathing”. I got caught on my phone around sensitive machines so I was ordered
to turn it  off and put it away. The nurse that was assigned to me took on a
mother role and  said her daughter was my age and if she got the text like the
one I sent to my  parents and didn’t hear from her afterwards she would be so
worried. She let me  turn it back on and update them on my situation. They
didn’t know for over two  hours what hospital I was even at or why I was there.
I wrote a few short words  about being at the Misericordia Hospital and I would
try to update as soon as I  knew what was going on. I don’t think any of us
really understood the  seriousness of the situation because they both went off
to work and started  their days as I would have if I was on the receiving end of
the text messages.  It took until about 9AM that day to tell me I had
“Supraventricular  tachycardia” – or, in simple terms... My
heart beats at about double  the pace of a normal person’s heart at almost all
times. I wasn’t given a lot of  answers at the hospital. I was monitored for
another hour until it calmed down  and then I was released. I did two things
after that. Starting with the most  insignificant, I went to “Lululemon” and
bought the 2 things I’ve always wanted  but never bought because I figured I
would always have time to do it. I was  seriously convinced I was going to die
the night before, so I went and spent  130$ on materialist things that I felt
like I needed to have at that very second  to show myself I was still alive and
real. Secondly, I called my mom and told  her what happened all night & met
her at her work on my way home; still  covered in the tape and cotton balls as
memories from the horrors of the night I  just had. I had a new nurse during my
stay that took 7 tries to get my IV in  before I yelled to get another nurse to
get the needle in. I was probably  pathetic to look at... My mom hugged me a
little tighter that day and we figured  getting a prescription would be the
answer to this problem and it would be over.  Boy, were we wrong. Nobody could
predict how bad problems were going to snowball  after that night.


What started as what seemed like a normal cold  started taking its
toll within a week of my last hospital visit. I figured I  would just take cold
medicine and to fight it off. I was working another 12 hour  day,  which I was
getting used to again; the night time clinic was about to open  and I had to
work alone even though I had no voice left since it was robbed with  the cold. I
was doing fine setting up a notepad to communicate with incoming  patients until
my hands started going numb and my face and lips started tingling  and swelling
up. I texted a girl I worked with who lived mere moments away from  our office
and begged her to come to the clinic and come work so I could go to  the
hospital. The doctor I was working for that night was in a room with a  patient
and I didn’t want to interrupt so this seemed like a logical idea at the  time.
I had written out a note for her to read as I waited for her to arrive and  got
her to call my mom to meet me at the hospital. I grabbed my stuff and took  off,
again driving myself once she got there to cover my shift.  I sped through  the
streets, going about 80 or more figuring if I got pulled over that I could  get
there faster if the cops saw my situation themselves. Luckily, I got there  safe
and met up with my mom. She filled out my paper work and again, I was  admitted
without a wait. My face was so swollen I looked like I had fish lips  and I
couldn’t feel my hands at this point. It looked like an allergic reaction  at
first but through process of elimination they discovered the throat infection
  was causing my throat to swell & cutting off adequate air to get to my
brain  causing the numbness and face swelling. I was hooked up to an air machine
and  told to deeply inhale and exhale and slowly the feeling started coming back
to  my fingers and then eventually, my face.  I was given a prescription for
meds  and told to keep up the breathing techniques for the next little while if
I felt  that happening again. This part of the story is significant to any one
studying  Graves Disease today because there have been links between the causes
of  developing Graves Disease & infections. Little studies have yet to be
done  to prove this theory but other patients have noticed a similarity in
developing  Graves Disease around the same time they were fighting off some sort
of  infection in their bodies. With this as another minor speed bump in the road
of  life, I was back to work within the next few days.


I really started  ignoring the fact I had been in the hospital for my heart only weeks
prior and  didn’t make any follow up appointments assuming that the night was an
isolated  incident. I started noticing my heart was acting up more and more
every day.  Doing simple tasks would make my heart pound like I was running a
marathon or  skipping multiple beats throughout the day making me feel light
headed. I was  also noticing my normally cold office was getting warmer and
warmer to the point  of being unbearable. I used to hate the thought of going to
the doctor for  anything was as bad as getting teeth pulled. I avoided it at all
costs so it  wasn’t until I had shared my feelings with the same girl who
rescued me when I  was sick pushed me to see a doctor at our work. She took on
the Mom role instead  of the friend role. She made my chart (I can see the
beginning of the beautiful  blank pages of the chart in my head as I write this
with a heavy heart... What I  would do to have a magic wand to rewind back to
those days where nothing was  wrong with me), and she forced me into an
examination room and closed the door.  I sat anxiously and when the doctor
walked in I nervously described my symptoms.  It felt like a Psych session
sitting in the big empty room with my thoughts  echoing off the walls and
someone hanging off every word I said trying to  diagnose me. He wrote me a
blood requisition to see what was going on with my  insides, and on my lunch
break the same day I went and got my blood drawn. I  also got an ECG
test done by a nurse who worked at my office.  My heart was beating
abnormally in the 130 beats per minute range but with  nothing else to go off of
yet; I continued on with the work day.


What’s an ECG test? ECG (electrocardiogram) is a  test that measures the
electrical activity of the heart. The heart is a muscular  organ that beats in
rhythm to pump the blood through the body. In an ECG test,  the electrical
impulses made while the heart is beating are recorded and usually  shown on a
piece of paper. This is known as an electrocardiogram, and records  any problems
with the heart's rhythm, and the conduction of the heart beat  through the heart
which may be affected by underlying heart disease.


Two days later
At work I got approached by the same Doctor mid-shift I
 had seen previously and asked to go in one of the examination rooms.
Considering  I never really had anything else wrong with me before this year, of
course I was  on edge. Blood work showed that my thyroid levels were out of
control & I  was diagnosed with “Graves Disease”. I was told a referral
would need to be made  for an appointment with an Endocrinologist.
My appointment was  mere days later since quick treatment for conditions like Graves &  Supraventricular Tachycardia is very important.


What is an  Endocrinologist?
An endocrinologist is a specially trained doctor.  Endocrinologists diagnose
diseases that affect glands. They know how to treat  conditions that are often
complex and involve many systems within the body. Your  primary care doctor
refers you to an endocrinologist when you have a problem  with your endocrine
system. Endocrinologists are trained to diagnose and treat  hormone imbalances
and problems by helping to restore the normal balance of  hormones in your
system. Some of the conditions they specialize in  include:
-Thyroid disorders
-Metabolic disorders
-Over or under production of hormones
-Cancers of the endocrine glands

The 7 Months Following Diagnosis

 

 I was put on a series of pills immediately after seeing my Endocrinologist &
finding out I had Graves Disease. It started with 4 a day, then 8 a day; until it hit my highest of 16 a day. Nothing really seemed to be helping me.
Slowly I noticed I was getting more & more tired and sluggish as the days passed. I couldn’t even climb stairs  without having trouble breathing.
My body was always in a “work out mode”, meaning my heart was beating at a pace that most people only reach ifthey are  going for a run while I was resting so adding even a little extra work to my  body like stairs or going for a walk was putting so much stress on my body. It  should be noted that not every case of Graves Disease comes with heart
problems,  but in my own personal situation because my Graves was so bad I was
unfortunately dealing with both at the same time. The specialist conducted a
simple test in the follow up appointments I went to where I was told to hold
out  my arms in front of myself, palms of my hands facing the floor & they
balance a sheet of paper on the tops of my hands. Every time, my hands were so
shaky that the paper fell of my hands and onto the ground. Another test was
holding my hands about 2 inches apart from the doctors and seeing how much heat
I was giving off. Every time the Doctors were amazed at how much hotter I was
than the average person. Even I knew I was radiating off an excessive amount of
heat. I stopped wearing sweaters months before at this point, even though it
was  winter and usually around -20 or -30. If I went out, I didn’t wear a winter
coat. I got stares and weird looks everywhere I went from people all bundled
up.  I always felt like I was being judged because I looked fine on the outside
but  my insides were falling apart. There were times where I felt like this
disease  had won its battle over me. It completely took over every aspect of my
life. I  had to stop working in September 2010. I wasn’t going out anymore. I
hadn’t felt  anything but pain and being uncomfortable for months straight. At
the time of  this writing; I’m still not completely better but I definitely see
the light at  the end of the tunnel now. That fact alone is another reason why I
feel obliged  to write this Blog, because I want to be a source of hope for
anyone else who  has to go through this horrible Disease.  I never sat there at
any point and  felt sorry for myself. The most common thing I heard when people
knew even just  a little part of the whole picture, they said “How are you so
positive?” Or “How  do you stay so happy?” The answer is simple, because I had
lost myself through  all this and I only saw my identity as ‘Graves Disease’. I
didn’t remember what  normal felt like at a certain point so I just tried to
live with it. I look back  now even 2 weeks after my surgery and I now realize
how awful certain stories  looked in other people’s eyes. It’s not ‘normal’ to
give blood every week,  sometimes twice. It’s not ‘normal’ to end up in the
hospitals every week. It  wasn’t ‘normal’ when people put their hand over my
heart and felt it skip beats  or feeling it beating really fast. I’ve watched
more people shed tears over me telling the stories than I’ve cried myself.
Something I’ve read that my Dad  wrote on his blog struck me the hardest. It
simply said; “Grave’s Disease is  cruel”. By this, I think he means all the
times he saw me get admitted for  treatment at the hospitals. Besides the usual
symptoms of Graves Disease itself,  came these awful “episodes” of especially
uncomfortable pain. I’m not sure what  the actual name for these episodes are
called but I will explain what happens  start to finish during these attacks. I
would be sitting at home doing nothing  out of the ordinary and had a completely
normal day when suddenly my heart races  worse than ever, my chest gets so tight
I cant breath (like the original time it  happened and I knew something was
wrong), I can’t talk, I throw up, I shake  uncontrollably and I just know I need
to get medical help ASAP. The feeling of a  heart skipping beats repeatedly
makes a person very light headed so I always  needed help walking to the car to
get to the hospital. The best way I could  describe the feeling of a heart
skipping beats, is being on a carnival ride that  drops down quickly & back
up or driving downhill fast in your car and it  comes back up quickly. It makes
your stomach turn and you feel ‘out of it’ for a  few seconds, except if you
have a heart problem; that feeling doesn’t go away. I  couldn’t even guess how
many times I had these attacks & had to go back to  the hospital over the
year. We have a running joke in my family that I did the “Hospital tour of 2010”
because I had literally visited every one of them in the  city by the end of the
year. I found out its good to have a little sense of  humour about the situation
or it probably would have started becoming a little  depressing. I can’t thank
my Mom enough for the hundreds of hours she spent as  my bedside at all
ridiculous hours of the nights holding my hand while they  poked me with needle
after needle so I didn’t cry.


I started  meeting monthly with my Endocrinologist at the University of Alberta Hospital. 
We reviewed everything about pills & the blood work I was doing that wasn’t  showing any signs of improvement. It was becoming obvious more drastic measures  were going to need to be considered. I started becoming some sort of science  project for the
doctors that studied me. Slowly there would be more people  coming in the rooms
with the regular doctors because my case was so usual they  wanted to learn from
me. Graves is a relativly 'new' Disease. So few people  (compaired to other
illness') have gone through this so Doctors are still trying  to learn about it
as much as they can since it hasnt been studied as much. If I  was in an ER
room, the doctors asked me every question possible for their  research and own
personal knowledge. I recall one doctor sitting at the end of  my hospital bed
grilling me with questions after he released me from his care  and said I was
‘fascinating’ & he wanted to ‘pick my brain’ all night but  knew I was tired
so he let me go home after a particularly long night.  I  started hearing that
more and more as my blood work wasn’t getting better.  I  heard from my
Endocrinologist that she rarely saw cases as severe as mine and  that I was her
only one all year with such bad symptoms. In a way that was  comforting because
knowing what I went through on a daily basis, I would hate to  know there was
another person feeling the same way. I was given a timeline last  year that I
would have about 6 months to a year to decide between two kinds of  treatments
to help treat Graves Disease. I didn’t really pursue looking them up  online
because I thought I had more time to investigate either treatment.

10:30PM December 28th/2010
I hit another speedbump in road on the night of December 28th/2010.
I was driving home as a passenger in my friend’s car. After a good meal at a restraunt a mere five minutes from home I got in an awful car accident. (I call myself an 'old pro'
at  car accidents, since over the years I had been a passenger in four of them
already.) Travelling through a green light facing us, the other driver we
collided with though she had enough time to turn left in front of us and we
hit- HARD. The speed limit on Terwillegar drive is 70Km/H instead of 60 &
the  sheer force of the collision sent us in an almost perfect 360 degree swirl
through the intersection and facing oncoming traffic. Two things helped us from
it being much worse- It was late at night and there was little traffic to hit
us  again and there was a large snow bank that the car came to a rest on
otherwise  we probably would have ended up hitting the light post or possibly
flipping over  as well. The air bags went off and when we came to a stop
finally, I started to  panic when I couldn’t get out of the car. The powder that
the air bags give off  once deployed is near impossible to breathe through and
the impact from the  other car forced my door shut. I was kicking the door
repeatedly & screaming  for help to get out. I needed help from the other
side of the door to get out.  Because I was used to having Graves & being
overheated, I was wearing a  little t-shirt and very light over coat. Never did
I expect that I would be in  this situation and the unusually cold -30
temperatures were bone chilling after  only a few minutes out of the car. I
couldn’t go sit back in it to warm up  because the air bag powder still hasn’t
settled in the air inside the car. I  apologize for what was probably the most
terrifying call no mother would want to  get at almost 11PM at night- “Mom,
(sobbing uncontrollably) I’ve been in a bad  accident” She kept asking me where
I was & through my shock I really  couldn’t tell her. Terwilleger Drive is
quite a long stretch so I just kept  saying “Drive down it! Drive down it!” My
mom was probably horrified not only  getting the call but not knowing what she
was going to find when she got there.  Soon after the call; she arrived and
hurried me in her warm car and called the  ambulance.  Although I knew I was
hurt, my biggest problem was the nausea I was  dealing with. The force from the
impact made me so sick and the disoriented  feeling was overwhelming. The
firefighters got to the scene first and climbed in  the car I was in and sat
directly behind me holding my head straight ahead and  asking me if I knew my
name, the day and the year. I knew the answers, but it  took me a few more
seconds than normal to say the year. I had to think about it.  The impact had
knocked the wind out of me but luckily there wasn’t permanent  damage. Minutes
later I was being strapped to a cold hard plastic spine board in  a t-shirt
outside in what felt like being in a giant freezer. The restraints  took a long
time to do up outside and I was put in the ambulance. I was shaking
uncontrollably being tied down & I was put in a head restraint as well. The
EMS worker kept telling me “If you have to throw up (which is all I was trying
to concentrate not to do), you have to tell us because we have to tip you over
to face the floor so you don’t choke because we can’t let you out of the straps
until you get X-Ray’s” This was not exactly comforting. Most of the ambulance
ride was spent talking about my Graves because the worker didn’t know much
about  it and wasn’t sure which medicines to give me for nausea. He was also
trying to  figure out the difference between accident injuries and the conditions of  Graves.
I spent almost two hours in the entrance of the Grey Nuns strapped  down having a panic attack.Finally, I got to the front of the line and they  took me in for my tests, but I was wheeled back, still in the restraints, into  the entrance of the Hospital when they were done to wait for the results. I got  an IV put in to my arm in the middle of the hallway to keep
up with the anti  nausea drugs they needed to give me. I had to refuse any pain
killers offered to  me since I already knew they made me sick anyways. After a
half hour I got put  into a semi-private room and let out of the restraints once
a doctor said I  didn’t break any bones. I spent another few hours there for
observation and once  I finally said I wasn’t feeling sick anymore (which I
still was), they released  me at 5AM. I just wanted to go home after a night
like that. On top of all my  usual daily symptoms, recovering after being tossed
around like a rag doll in  the car was particularly
uncomfortable.

"The damage"


February  6th/2011
I made it just over a month without being in a hospital. It  seems like a sad thing to celebrate as an accomplishment, but it had become my  reality. I was told throughout this whole process that the thyroid pills I was  taking destroy
the white blood cells in the body and if I ever got sick, I was  to get to an
emergency department ASAP. Anyone who knows me well will agree when  I say- I’m
stubborn. I tried to fight off a diagnosed case of tonsillitis but  when it came
to the point I wasn’t able to swallow even water anymore; I  admitted defeat and
went to the Misericordia Hospital. I was with my friend  again who took a look
at the waiting room and said “You will be waiting awhile  here”, but I knew
through my experiences over the last few months that the  waiting room was never
a place I ended up.  Either my blood pressure was too  high or my heart was
racing too fast but I couldn’t remember the last time I  actually had to wait in
that general area. I walked up, whispered my problem and  as the nurse took my
pulse I watched the smile on her face dissapear. She yelled  behind her “We need
a bed- now!” My heart was beating at 144 beats a minute  which was normal to me
at that point in my life because I saw it every day but I  understood why it was
unusual for her to see, especially considering my age. She  wanted me to get
taken in a wheel chair to my room but I told her I walked in  and I could
definitely walk to my room. An ER doctor came in and assessed my  cold. I filled
him in on my Graves Disease & my other troubles. I had the  formula down to
a science now on what I knew the doctor needed to know since I  had to repeat
myself so much over the last year. The thyroid pills I had been  taking (The
combination of the daily 16) had been working for & against my  body at the
same time. On one hand, they helped control the thyroid a bit but on  another
hand, they almost completely destroyed all my white blood cells. He  ordered
some blood work for me & took off for awhile.

As soon as the  nurse who had to take my blood entered my room,
we recognized each other (If  that’s not a sign you end up there too often, I don’t know what is.) She was the  same nurse I mentioned earlier who took on the ‘Mom role’ while I was alone  during my initial visit with heart troubles. She took a few tubes of blood, did
another ECG test on my heart & left my room. The friend who came to the
Hospital had to leave my side because it was getting late and they had to work
the next day so I was sitting alone at this time. The ER doctor came back in
looking concerned and sat down in front of me. “Your blood test came back, you
are very lucky you came in today; you have 600 white blood cells left in your
body to fight off this infection, a normal person has 4,000-11,000 (these are
per micro litre); you most likely would have died in the next few days if you
kept trying to fight it off yourself”.  The words he said went in one ear and
out the other. It wasn’t the first time I had heard this before. Usually it was
“If your heart doesn’t calm down- it can only beat so much- it WILL give out
over time”. I think almost everyone is afraid of death in some way. Me, I had
long accepted that whatever happens does happen for a reason and if you had to
go one way; it’s inevitable. It probably sounds weird that a 23 year old thinks
that but I was never one of those people that felt like they were going to live
a long life anyways. I’m a big believer in the theory “If it makes you happy
TODAY, do it, because tomorrow isn’t guaranteed”- thus my tattoos. People would
always tell me I would regret them when I was older but in reality... I never
saw myself getting old & I still don’t. My favorite tattoo I have? "Never
take today for granted" - Ironically, written on my chest across my heart.  I
think the doctor & I had a mutual calm unstated understanding of the words
that just came out of his mouth. He saw & said stuff like that on a daily
basis and I think he knew I had been told something along those lines before as
I listened emotionless.  “You are going to have to wear a gown and a mask and
you are not allowed to leave this area of the hospital, you are very sick and
it  will be deadly if you picked up anything the other people in the emergency
department has. I’m ordering more blood work & admitting you as a long term
patient and I don’t know when you get to go home” he said, and this was the
last  time I saw him. For some reason, not knowing when I got to go home
resonated  much louder than the death warning.  Within seconds another nurse was
in my room  giving me my new ‘hospital chic’ attire, a white gown with blue
snowflakes, a  sky blue over coat and matching blue gloves/mask. I was fine
wearing all the  gear but when they said they were bringing in a portable toilet
so I wouldn’t  have to leave the room, I drew the line. I had to use my
persuasion skills on a  younger nurse and agreed to take all the precautions
needed to safely use a  public washroom (I’m sure the nurses hated me because
technically, THEY had to  sanitize the washroom for me if needed).



The doctor had paged what  they call the “Blood team” and I waited
patiently for an hour for someone to  come. Luckily my sister Lauren had arrived
by then & was helping me pass the  time. I was not ready for the shock of
what the blood collection lady was going  to do to me. The creaking of the
wheels of the blood cart could be heard  creeping closer and closer to my room.
I knew it was coming for me even thought  I couldn’t see through the curtain.
It’s a sound you never forget, and never  want to hear anytime you are in a
hospital. Normally, I willingly give up my  blood for the few tubes they take
and wear my cotton balls as mini-trophies of  surviving yet another needle...
but this time the lady came in brandishing two  bottles that could have easily
doubled as hot sauce containers. She said “You  get to do two of these for me!”
If there weren’t concrete walls behind me, I  would have crawled up and over and
ran for the hills. Sadly, I was stuck in a  corner and I had to stretch my arm
out and admit defeat. The only positive part  about these containers is that
they are designed especially for testing blood  for what kind of ‘bug’ you
picked up so they can kill it quicker through  medicine and about 40% of it is
already mixed with a clear liquid that your  blood floats on top of. It
definitely fit along the lines of “The bark is worse  than its bite”. It took
about 5 minutes to fill up the two bottles completely. I  was never one to get
light headed after blood was taken but as soon as I sat  back up, I was feeling
it to say the least. The nurse leaned over and handed me  some Arrowroot cookies
as some sort of peace offering and with that she carted  off and another hour
passed before I got any more information on myself.
I  spent the next 4 hours sitting in a 2 meter by 3 meter room in a dark corner of  the emergency department with my sister.  It was in the wee hours of the morning  so most
patients were sleeping but Lauren and I kept ourselves busy quoting our
  favourite movie “Anchor Man”.  Not one of the nurses told us to be quiet
because  I’m assuming hearing laughter was a much more welcome change to hearing
cries of  people in pain all day long. When it got close to 6AM, I told my
sister to go  home and get some rest. I was so used to being independent in
hospitals at that  point that I didn’t care I had to keep myself busy until she
came back. Anyone  who came in my “room” suggested I slept. Considering where I
was, I knew that  wasn’t a possibility, besides... the stories I was hearing
through the curtain  were much more entertaining than wasting the night
sleeping. To the right of me,  a man they had to restrain to his bed because he
overdosed and was combative to  the nursing staff & to the left of me, 4
officers at almost all times  rotating shifts looking after someone who had
stayed sleeping during my whole  stay on the floor so I’m not sure how he ended
up there. The only time anyone  came into my room to say anything to me was to
give an update on finding me a  private isolation room. As the dawn turned into
day and the day became night  again; my friend, aunt & sister had visited
me. My parents were in Phoenix  Arizona at the time of my admitting and it was
their 25th wedding anniversary.  Want to know how my mom spent it? Flying home
to see me. If those aren’t GREAT  parents, I don’t know what is. They gave up
one of the most special days of  their lives to accommodate me. It took until
about 28 hours later of being in  this tiny corner I had adapted as my new home
to get the much anticipated news, “We found you a
room”.

February 7th/2011
I had  to keep all my gear on as I got wheeled away in a bed they brought to move me  from room to room. Little did I know then that I wasn’t going to be going home  for over two weeks.
I got put in a private reverse isolation room. Anyone who came into my
room at anytime had to wear everything I had on when I was downstairs in the
general population. I always felt bad for the nurses who had to constantly come
into my room throughout the days. The masks were so hard to breathe through. I
really would have understood if no one had visited me. Everyone of my days at
the Misericordia were spent in my room, I didn’t leave once except for a half
hour test I did a few days in. I got an IV put in within a few hours of being
at that hospital but the same night I got moved to my room, it fell out again.
IV’s, if inserted properly don’t hurt after the initial poke. IV’s that fall
out under your skin and fluid continues to pump through, are incredibly
painful. Over the course of my stay I had 7 pre surgery IV’s fail while under
my skin and it took 10 tries total to insert all of them back in. I had my
blood taken at least 25 times in two weeks on top of the getting IV needles. If
I had to take a fair guess at how many needles total I have had since being
diagnosed 'till now, it would be easily be around the 100 mark. (Ouch) At times
my arms were so bruised from the top of my shoulders to the tip  of my fingers
that I had to play a game of "Where do I think it will hurt  less when they take
this blood from me?"
I used to always cry when I got  them at the beginning of all my health problems,
but I’m almost at the point  where I can watch the blood actually being drawn.
I feel like a pro when it  comes to giving blood but I still get tears in my eyes getting IVs.
They are  extra scary when you get a “surgery” IV.
Normally the needles are pretty tiny  but having a pre surgery
needle (that I get again later in the story) can easily be compared to having a
steel pipe being jabbed and set through your skin. You can’t even bend your arm
anymore. Sadly, this one also fell out before I even got surgery and had to be
reinserted and I definitely needed my hand to be held on getting that done more
than once.  Thanks again to each and every one of my family members who were
there to help me because I know most of you had to see that and cringed as much
as I did. When I was first admitted to this hospital, I was only being treated
for the deficiency in my immune system. It was when doctors started seeing my
constant elevated heart rate that they really began investigating my Graves
Disease a little better & were always in  communication back and forth with
my Endocrinologist that they decided that I  should be considering a solution
for my Graves and Supraventricular Tachycardia during my stay.

My days in the hospital were spent 3 ways. I was either  1) Watching TV. 2) Playing the
games Jenga & Trouble or 3) Getting tests  done. For informational purpose-
The tests were either for blood or  ultrasounds.  I was given Radioactive Iodine
to drink one morning. It felt like  my insides were on FIRE & I drank pure
acid after I swallowed it. It’s  tasteless, odourless and completely deceiving.
It took about a full hour to feel  any kind of burning so I thought it was going
to be as simple as drinking a  glass of water. The people who give it to you are
dressed head to toe in gear  and protective clothing which wasn’t too reassuring
at the time. They send you  back to your room to let it cook in your body for 24
hours and the next morning  I repeated almost the same process but with another
liquid. I can’t remember the  exact combination of the mixture but I remember it
being half liquid potassium.  Ten minutes later I was put under a large machine
and the radiologist took 4  pictures of my thyroid. Each picture took 3-4
minutes to capture and I was not  allowed to move a millimetre. The pictures it
showed were like 4D images that  are comparable to the ultrasounds of babies
that you can see their actual faces.  The pictures I saw reminded me of what a
fortune cookie looks like (Or  butterflies as the Doctors like to use to
describe it). I was told that my  thyroid was almost 3 times of a normal thyroid
gland that day. My case of Graves  Disease became tricky for doctors at this
point because the doctors at the  Misericordia wanted to dissolve my thyroid out
of my body through the use of  more radioactive iodine and the Endocrinologist
at U of A Hospital wanted me to  get surgery to remove it. Both options had
their complications but in the end  after my first attempt at drinking the
radioactive iodine, I wasn’t too  convinced to do that again. Another huge
reason was the problem with my eyes.  Graves Disease affects almost every part
of your body- one of which is your  eyes. Since being diagnosed I slowly watched
as my eyes started to bulge out  more and more as the disease progressed. The
reason for that is that the muscles  behind your eyes start growing weird and
thicken behind your eye sockets not  only causing pain; but protrusion as well.
It’s been studied that radioactive  iodine has a tendency of making this
condition worse if ingested under  circumstances like mine. Having the option to
choose between bulging eyes or a  scar- the scar won. The science behind
removing my thyroid was that if they  completely took it out, my thyroid hormone
levels would even out and my heart  would return to a normal rhythm. 
As soon as I had made my decision the  hospitals arranged for me to take a ‘field
trip’ from one hospital to the other  and meet the surgeon who would be taking
care of me. If I wanted to be  transported from one place to another I had to
wear all the isolation gear, not  because I was sick anymore but because anyone
I came in contact with could get  me sick. Being wheeled through the hospitals
fully covered up was one of my  least favourite things throughout my stay. I
knew exactly what everyone thought- I had some horrible illness that they could
all catch if they came near me. It  bothered me because I felt like I was being
judged everywhere I went but it also  showed me compassion for other people in
similar situations because as the  saying goes, “All is not always as it
appears”.

As soon as I met my  surgeon, I felt comfortable. He explained
to me as clear as possible why I  needed this surgery and answered every
question I threw his way.  I got ‘lucky’ in my situation because the surgeon had
a planned vacation long before I had met  him but since my case of Graves was so
severe that once he learned about it; he  fit me in 3 days after he heard about
me for the initial meeting & a few  more days later that for my surgery. We
both had a mutual respect for the  situation. He had told me he had only ever
seen ‘5 or 6’ cases as severe as mine  in his career and he looked at me as a
learning opportunity and I was  appreciative to have him offering surgery so
quick. When I was lying in my room  one day he came in and asked me if he could
use me as a course material for  lesson plans for the students he taught. He
said he wouldn’t give my name out  but he wanted to share my case with all of
his future students and pass on the  notes from my surgery. Of course, I said
“yes”, if I could help science in any  way to help prevent this from happening
to someone else or even help the future  generations of doctors who need to
learn... why wouldn’t I?
February 17th/2011- Surgery  Day

 I woke up completely calm.
Since I had  surgery less than a year ago I knew exactly what to expect.
No breakfast, give  pre-surgery blood work, sign a waiver & wait patiently
until a man in a blue  mask came to collect me and wheel me down the halls to
join the room of people  waiting to get cut open too. At last, at 10A.M I heard
the knock on the door. I  reluctantly handed over my only connection left to the
window of the world... my  glasses. I knew it was real now. My mom was there to
see me pass the big locked  door to the little house of (carefully planned out)
horrors. I gave her a kiss,  told her I loved her and 5 minutes later I was back
under the ‘oh-so-familiar’ blaring white lights. I got a great
anaesthesiologist. He tricked me and told me  he had to grab something from
another table after he hooked my IV up to a  machine. That was the last memory I
have of him because I was out like a light 2  seconds after he left my side. I
guess I appreciate it more that way because the  countdown from the mask I got
in my previous surgery made me much more nervous.


1:00PM February 17th/2011- Recovery Room
I woke  up in a much nicer setting then last time.
The room was dim and the nurses were  dressed in bright colors
so I didn’t feel like I woke up in a SAW movie this  time. Most people probably
aren’t crazy enough to notice that, but anyone who  knows me well; knows I’m a
little ‘unique’. The only reminder I could see of  surgery was what looked like
miles long IV tubing taped to my arm along with the  3 needles in my hand hidden
under the tubing I did not fall asleep with  pre-surgery.  I’m glad they waited
until I was asleep to put those 3 needles in  the same hand or I would have been
that crazy girl who tried to run home in her  hospital gown.

Almost immediately after I woke up I was wheeled back  into the room I had been staying
it. My mom came soon after and the first thing  I did was ask for a mirror. I
wasn’t falling for the tricks of a nurse telling  me about my wound this time!
To my surprise, besides the swelling it wasn’t too  bad to look at. It looked
like a 3 inch piece of white tape with a little blood  soaked underneath it.
They didn’t use any actual stitches in this surgery for  healing purposes on the
neck area. The nurses suddenly turned into a candy shop  for pain medicine. The
first few hours after the surgery, I wasn’t allowed to ‘say no’ to the pain
medicines. I was definitely on the edge of my bed crossing  my fingers that some
combination of the drugs wasn’t going to make me sick. The  last thing anyone
who was looking after me wanted was to see me try and throw up  with a fresh cut
in my neck. So, because of this any time they gave me a needle  with pain
medicine; they had to give me an extra strength gravol with it too.  The first
day following the surgery, I think I only ate one cup of pudding and a  Booster
Juice. Both made me feel sick anyways. I got up twice that whole day  because
the nurses needed to walk me around the hallways like a little dog so I  didn’t
get blood clots in my legs from the angle I was forced to lay at. I  couldn’t
talk yet so I texted the family members who were sitting 2 feet away  from me in
my room. I didn’t sleep at all that night because someone was always  coming in
waking me up to give me a dose of pills or take my blood pressure & heart
rate.

February 18th/2011
I took one last  dose of painkillers in the morning, and in all honesty; it really had no affect  on me in the last 24 hours anyways. The nurse told me it was 10 times more  powerful than morphine. I already knew through my years of playing the self  named game of ‘Painkiller Russian Roulette’ that no drug had really helped more  than it
hurt. After being injected, I felt maybe 5% pain relief but only for  5-10
minutes and then nothing but extreme nausea. I think I have a higher pain
 tolerance than most people anyways, or maybe I just learned acceptance over the
 years to prepare myself for the worse so it would hurt less in the end. It’s
amazing how much you don’t think about the muscles you use to lift yourself out
of bed. If I was lying completely still, I was uncomfortable but I could deal
with the situation. It was when I needed to get up for any reason that it felt
like Hell on earth. I needed someone to take my arms and pull me up but also
put  a hand behind my head and lift it up at the same time. I had absolutely no
neck  strength at all and my neck felt like Jell-O. I could only look at the
floor and  a tiny bit & could barely look something straight on. My body
movements  resembled that of a frail 95 year old. I shook uncontrollably when I
was  standing up or tried to lift my head too much. It felt like I had a steel
pole  running down my neck to my torso. No bending, no stretching, no yawning
and  definitely no sneezing (have to admit I learned the hard way on all of
those).  On the second day I had a quiet raspy voice and I no longer had to rely
on just  texting and pointing. It hurt to talk but I needed to start working my
vocal  chords a bit since the surgeon warned me they were so close to the
surgery area  it was important to see if they were still in working order. I was
still a baby  about actually talking through the pain though. I’ll admit I still
did a fair  amount of texting that night.


February 19th/2011
This was the morning I was told I would get go home.
Sounds simple right? It would be, but I’ve definitely learned through this last
year never to get my hopes up about going home. My patience skills definitely
paid off that day. As a nurse came in and told me they were writing up my
discharge papers, I could feel my heart racing faster and faster. I had to play
a game with myself, “Do I tell her, or do I go home”? My continence told me...
I  should say something. The nurse hooked me up to a blood pressure machine/
hear  rate monitor and quickly ran out of the room. I couldn’t see what it said
since  I couldn’t bend my neck to look at the screen behind me. Suddenly my door
was  being thrown open and a team of 5 doctors and nurses were all working
together  to attach a ECG monitor to me, take the test itself & some were
observing  when finally someone said “Everything will be ok, but we will have to
keep you  overnight for observation” That was something so unsettling to hear
that in the  situation. “We gave you too much of one medicine and your having a
reaction to  it”. I was so used to my heart beating fast but it was REALLY going
now. I asked  them to call my mom to let her know but she already had her ‘Mom
ESP’ going on  and walked in to catch the action as it was playing out. They
asked me a series  of questions and pulled out the half mile long paperwork the
heart monitor spits  out after every reading and got a confirmation it was
beating fast, but nothing  dangerous they couldn’t fix. They unhooked me, set up
a cocktail of medicine to  reverse the effects of too much
Synthroid and hooked me back up  to the IV where only mere
moments before, I counting down to it being removed. I  must have reacted well
to the treatment because when the nurse came back &  told me I was actually
allowed to go home about an hour later; I heard the  collective sigh of Angels
in the background whispering “HALLELUJAH!”


What is “Synthroid”? Synthroid is a  pill replacement for a hormone that is normally
produced by your thyroid gland  to regulate the body's energy and metabolism. It
is given when the thyroid does  not produce enough of this hormone on its own.
Synthroid treats hypothyroidism  (low thyroid hormone). Synthroid is also used
to treat or prevent goiter  (enlarged thyroid gland), which can be caused by
hormone imbalances, radiation  treatment, surgery, or cancer.



My room  after almost half a month in two hospitals resembled a 7-11. I had every type of  processed food you could dream of, every magazine from the last 6 months ever  published (Thanks again Lauren!) and because it needed my own personal touch;  hair & makeup products. My mom left me in my room for a few minutes after  receiving the good news and set up the most perfect escape plan ever executed. 
She pulled up to the closest entrance, parked in the handicap stall
(I think I  counted in this situation), loaded up the car and then finally came to retrieve  me. At 23 years old, my mom had to dress me.
I would have been embarrassed but  it was a practise we had
been through many times before after my hernia surgery.  And when you’re in that
much pain, you just don’t care who sees your bum  sticking out of the back of
your gown anymore, I so ungracefully stepped in my  clothes, still just as shaky
and shuffled myself into the awaiting wheel chair.  (Even with stickers on it-
there is no way for a 23 year old to look ‘bad-ass’ in those wheels.) I pulled
my hoodie over my head so no one could see my face. I  looked like a modern day
Grim Reaper being wheeled to the car in my Victoria  Secret pink hoodie with
extra large hood. Every bump echoed through my body like  an earthquake.  It was
probably funny for other people to watch me try and  control the aftershock of
these bumps with my Jell-O neck.  After being  carefully loaded into the car and
a quick stop at Booster Juice; I was finally  laying in my bed at home where I
fell asleep & didn’t wake up until at least  12 hours later.


The Recovery
I have to say;  although the surgery was quite “uncomfortable”, I can safely say pain wise...my hernia surgery was much worse. I did need help with even the simplest tasks likegetting up for the next 3 days afterwards and I resembled a helpless dog with a
cone around its head in the aspect of not being able to properly lift my head
to  eye level of other people when speaking to them. Sleeping was again,
uncomfortable. I had to sleep propped up every night for a little over a week
and a half post surgery. I couldn’t turn my head left or right or stretch for
the same amount of time. Unless you have been through this surgery, you won’t
understand when I tell you I “feel” like something is missing in my neck. It’s
such a tender area that I am unable to wear my necklace yet and it is still
sore  to the touch. It’s still very tight and I’m getting to all the new
feelings in  the area. Right now, it’s been a little past 3 weeks since the
surgery and I  still feel like I can’t look up at the sky without an unpleasant
pulling  sensation on the incision. I’ve been told by a few people that they
think my  voice has changed a little and when I say certain things I definitely
hear it  myself but if you didn’t know I had surgery, it’s such a small change
you  wouldn’t even notice. I definitely had days I wanted to give up, I woke up
at  least two mornings and thought “Why am I fighting for this?” because the
pain  was pretty intense. I spent hours a day staring at the floor because it
was the  most comfortable position for me. I felt trapped in my own body not
being able  to use it the way I wanted to. You don’t understand how blessed of a
life you  have been living until you see how your body can work against you. I
spent a few  days mostly immobile and there are people who go months or even
their whole  lives in wheelchairs that I now have the utmost sympathy for. I
haven’t been  able to safely work out for the last 9ish months & now that
I’m getting on a  better path, I can’t wait to start taking advantage of going
for walks again,  running, eating healthier. It’s been a bumpy road but now that
I’ve been through  everything I have, I find myself doing everything I can to
keep myself safer. I  fought SO hard to get where I am today and I find myself
picking and choosing  when I leave my house much more carefully now because it’s
the only place I feel  safe. I’m not going to pick up a cold & end up back
in the hospital if I’m  sitting in my room. If I do leave the house; I triple
check each and every  corner or intersection on the roads to protect myself so I
don’t have a repeat  accident. I feel like most people don’t truly learn the
definition for  motivation until they have been through something like this.
There was a point  where I looked around my bare room in the beginning of my
stay & realized I  essentially had “nothing”. Anything that I needed had to
be brought to me. None  of my stuff was with me, my clothes and belongings were
all at home where I was  used to being. That was the very second I learned the
proper definition for the  word “appreciation”. For the last three years I
always had a ritual with myself  that I would start almost every day reading
positive quotes but while I was  recovering, I missed a few months of doing
this. Two weeks post surgery I  re-connected with starting my days like that
& I purposely picked a page of  quotes I knew I had already read before. The
words jumped out at me like never  before. I used to pass over so many of them
but suddenly absolutely everything  inspired me; it’s a wonderful feeling I wish
more people knew. I am one of those  lucky people who got a second chance after
going through this illness. A lot of  people who were in the hospital during my
stay are probably still there. One of  my biggest pet peeves now is negative
people. It hurts me when people constantly  complain about everything, including
the weather because there are people who  haven’t seen out windows in months who
would love to be out in the snow. When  someone says “My day can’t be worse”
over the smallest problem, it breaks my  heart. There is a quote I am in love
with right now, it goes "Live as if your  days are numbered- because they are".
Think, if you had a clock counting down  with the number of days you had left;
would you do anything diffrently? Would  you persue a dream you have but didnt
have the guts to? Would you tell someone  you loved them? Would you hug your
family a little tighter? Im here to say...DO  IT. Do anything that makes you
happy and cherish all the time spent surrounded  by people you love. I went
through 10% of what some other people go through in  their entire lives &
never did I not understand that I truly could have  ended up with a much worse
situation. The only regret I have through this whole  process, is that I didnt
take more pictures. I feel like I'm at a good point in  my life & I will use
the little amount of pictures I actually have as a  reminder to never forget how
truly lucky I am and make the best of everyday I'm  here. People are so wrapped
up in their own world and don’t take the time to see  how other people are
living and treat their situations with the most negative  approach ever. I
definitely understand our time on earth is precious and very  limited. I saw
firsthand how incredibly sad it is to see how the children at the  Stollery live
bed ridden and hooked up to breathing machines to keep them alive.  I have a new
respect and determination to do better now. I did 3 new things just  this
weekend I would have never done before in my life. I’m at the point in my  life
where I want to get involved with as many projects as possible when I’m  fully
able to. I want to see every movie I missed, read every book that ever
  intrigued me & I want to go to every play or event that comes to Edmonton.
I  want to volunteer; I want to go back to school & try a new career. I
truly  hope no one ever has to go through what I did but I’ve said it before, I
would  absolutely not change what I went through to happen any differently. This
was my  chosen path & I think I learned what I needed to through my
situation. I’m  not a religious person but I do believe every person has a plan
set out for them  before they are born. Every twist and turn in life was planned
for you before  you even knew it existed. Every obstacle is a test you need to
learn from. In my  case, it made me stronger; it made me a more open minded
person and it makes me  look at every situation in the most positive aspect. If
I had a magic crystal  ball exactly a year ago and I could envision this
happening... I wouldn’t have  believed it. I never thought I would be ‘that’
girl; the one who was always sick  and the only time people talked about her was
to see how she was doing. I never  thought I would be sitting in that many
hospitals. I didn’t think I would ever  get a needle without crying. Now I feel
like I have strength to wear my scar’s  as a badge to show “I survived”. I want
to be living proof that Graves can be  beat. I want to put a smile on someone
else’s face who reads this. I want to  motivate someone. I want to be a very
small part of the rule “It COULD always be  worse”. I went through such a small
portion what some other deal with their  whole lives and it almost broke me. I
want to motivate people to be nicer to  each other because you never know from
just looking at someone else what they  are going through on the
inside.

Overall; medically I have noticed  already a small change in my
heart rate post surgery; it is not slowing down as  fast as doctor’s anticipated
but it is getting better. I still take heart pills  to deal with the constant
‘racing’ feeling but over time I shouldn’t need to  take them at all. My thyroid
levels are also not at the spot they should be yet  since it was sitting at such
a high level for so long but it takes time and with  no thyroid gland left in my
body, it will most definitely fix itself. I went  from taking 16 pills a day for
months to taking two. I am still being  monitored by all my usual doctors and I
am catching up on all my follow up  appointments. There will be weekly bloodwork
for (hopefully only) 1 year if  eveything stays steady.  I am looking forward to
the final result of the surgery  and seeing how my life will improve.


"Thank-You!"
To all the amazing people who
were at my side since the  beginning;
 I can tell my story with a straight face from start to finish. I can tell you the only thing that brings tears to my eyes every time I  think about it. What my family has had to
go through with me always being sick.  I knew I could handle what happened to me
during this process. I could handle  the pain of the needles, the tests, the
trials and tribulations of this disease,  the ups and down, the uncertainties. I
hated thinking what my family had to go  through seeing me in the ambulances
& the hospital beds. I know it was so  stressful for them to have to come
sit in my room and keep me busy for hours a  day, every day for weeks sometimes.
  I know almost everyone has a fear of  hospitals but the fact that my family
showed up absolutely every time I needed  them makes me truly the luckiest girl
in the world. Thank you Mom for holding my  hand every time I needed it and
spending literally hundreds of hours at my  bedside when you had to work the
next day every time. You are such a strong  person and you would not let me give
up on myself. Thank you Dad for our heart  to heart talks and getting me through
all the mentally exhausting situations  this Disease put me through. Thank you
also for offering to take the whole  family down to our Arizona home so we could
all mentally ‘heal’ from this  nightmare as a whole. I know you put on a brave
face for me to look up to but  everyone that I spoke to throughout this whole
ordeal told me how worried you  were for me. Well, your strength rubbed off on
me because we got through this.  I’m so sorry for any worry or stress I put on
your shoulders. It’s all up hill  from here. Thank you to my sister Lauren for
always being the one person who  could make me laugh when most people would
consider where I was ‘one of the  worst places’. I never felt like I was a ‘sick
person’ with you around because  you would never let me stop laughing long
enough to get a frown on my face. A  funny story- Every morning I got woken up
to getting my blood taken & at  6A.M every day Lauren would send me a funny
picture of a monkey because she knew  I was alone in that bed and that was
probably the only thing I was going to  smile for. Thank you to my brother
Jeremy for making the trips into Edmonton to  come see me in the hospitals (Even
if you did have to run out of the rooms  whenever the nurses came in with the
needles!). If you couldn’t be there, you  would always text me to see how I was
doing, which meant just as much to me. I  still have the card you brought me
during my first week at the Misericordia and  I keep it in a special Memory box.
It’s sad you live far away but the whole  family cherishes any time we do get to
spend with you.  Thank you to my aunts  and uncles who also spent hours next to
my side when they could or would e-mail  me positive wishes if they couldn’t be.
I never felt alone through this process.  My family was the wall holding me up.
I don’t know how other people going  through any other kind of sickness gets
through it without a strong support  group like the one I have. I love you all
dearly and when you need me, I will be  there to help you any way I can in the
future. Back to the question I was asked  countless times; “How are you so happy
all the time going through what you are?” It was because of each and every one
of you was there for me. They say that if  you have even one best friend, you
are a truly blessed person. Considering I was  born into the best family anyone
could ever ask for; I’d say I was the perfect  person for this to happen to
because it was already known I was going to have  you angels watching over me to
get better.  To all the friends I had dropping in  throughout the many days
spent in hospitals or recovering at home- Thank You. It  really meant a lot to
me seeing who was there for me when I needed it. I was a  spoiled girl getting
all the gifts and flowers given to me. I have the best  friends a person could
ask for and I hope you know any time you ever need me I  will be there to return
all the favours you have done for me. Again, thank  you for being there on
this journey with me. You all deserve to give yourselves  a big pat on the back
for this. I love you so much.
Rayanne



I have the best family on earth!