"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 trying to keep my body going when I should have had 6,000-12,000 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 remove you’re thyroid, 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.
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 believes 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 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 take out the eyeballs themselves, scrape out the extra tissue that is growing behind the eyes and put them back in.
This is the next surgery 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.
http://www.ngdf.org/
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, brothers 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
***Final picture: That's Rayanne jumping out of a perfectly good airplane. She told her Dad "after" she did it so as not to worry me. I fully expect to see her at the top of Mount Everest one day with a big poster that says "Screw You Graves!"
Love you Punk - and the rest of my family - we are indeed very lucky people!
