"Wisdom is nothing more than healed pain.”

 

Update!

As I wrote my last blog almost immediately after my failed surgery; I wanted to post a little follow up about the complications of the surgery. While the actual surgery that I endured was painful, what I felt as I was healing was perhaps even worse. About 3 days afterwards, one of my eyes began to get very swollen. After a trip to the doctor, I was put on a 10 day course of anti-inflammatories and anti-biotics.


(Eye infection - Four days post surgery)



The healing of the infection was horrendous, along with the stomach turning side effect of the pills themselves. My vision was blurred, I couldn’t wear makeup, it was outrageously painful and any time I touched my eye, (even slightly) blood would gather in my eye. My left eye would bleed multiple times a day for about a week.

(10 days post-surgery)

I have since recovered and was able to participate in my work Halloween party…



I am currently searching for another Doctor to complete my Blepharoplasty operation. The stress of not knowing when my eyes will be fixed is a little heartbreaking. I feel like I’ve been through the worst of it however and as long as nothing I’m going through is life threatening like some of my other needed operations; I am ok with a little waiting to find the right surgeon for me.

I am still overwhelmed about the support I received while recovering. Thank you to my family for catering to my every need’s, thank you to my boyfriend for trying to make me smile when I was at my grumpiest and thank you to my work for offering unlimited hugs upon my return to the office.




Did you know?
My blog is turning ONE YEAR OLD!


On November 15th, my family will be celebrating all the success of Graves Disease awareness this last year has brought via a wonderful night out together.
(If you would like to join, you know how to contact me!)

As I reflect back on all the wonderful messages I have received from readers literally around the world; my heart is full of love. I have been blessed with an abundance of support from other Graves Disease sufferers and others who were simply touched or inspired by my story. To hear that my writing has stirred up deep feelings and emotions while reading is the highest compliment to me. I promised myself since day one that this blog would be real, honest and accurately capture the up’s and downs of this illness. Complete strangers have written me heart wrenching e-mails about their own struggles with the disease and left me in tears as well. Some of these people included every detail about their story, both happy and dire because they don’t have supports in their life to listen or help while battling Graves. Just as you have mentioned your appreciation for my blog, I appreciate you confiding your story in me as well. I have been touched and moved by your words and I thank each and every one of you for taking the time to write me, tweet me or add me on Facebook.

My goal for my one year anniversary of this blog is to get to 10,000 reads!
What I ask of you, is that if you have been reading along or perhaps moved by anything you have ever read on here… please share, tweet, post (or even shout off a room top!) my blog address. If you know anyone in your life who you think could benefit from either learning about thyroid issues, graves disease, surgery or just needs to hear a genuine feel-good story, please pass the link onto them. Together we can reach the goal of 10,000 reads!

Over this last year, I have also been invited by numerous media outlets across Edmonton and beyond to discuss my story and I am grateful to each and every one of them for helping to spread the message about Graves Disease. I have a few more media appearances coming soon that I will keep followers updated on as they happen.





As the holidays approach, I encourage you to see the good in every day; even if that means looking a little harder some days. The thing I appreciate most that this illness has put me though, is learning to see the beauty in nearly any situation. I find myself stopping at amazement in simple objects or places I never noticed before and snapping pictures lately. I am truly thankful for each new day. Perhaps we should all be a little more thankful for today, since it is the only one we know we have for sure. (Pictures below are moments I captured!)



I also hope that you all get to spend more time with you family. Don’t wait for something bad to happen before you take the time to tell everyone in your life how much they mean to you. So to my friends, family, co-workers, readers and followers; thank you for taking the time to check in with me over this last year in particular to see how I have been doing. It has been ‘one hell of a year’ and I am only getting stronger after every needle, stitch, surgery and complication that Graves Disease has forced upon me.While this disease has prepared me to expect the unexpected, I am ready to take on whatever life decides to have in store for me, good or bad. Thank you for being a part of this journey with me.


"There are two ways to live your life. One is as though nothing is a miracle.
The other is as though everything is a miracle."

-Rayanne
 

"There are two types of pain in this world; pain that hurts you and pain that changes you."

October 18th was supposed to be one of the best freeing days of my life.  

It didn't turn out that way.

Here's what happened.

I was booked for a more complex version of a Blepharoplasty to erase the outwards reminder of the havoc Graves Disease has caused on my eyes.

Instead I ended up living through the most terrifying day of my life to date.

I will state now that this post is very graphic and if you are uncomfortable hearing about medical procedures, I would cease reading now.

I had been stressing over the idea of being awake while doctors cut and removed pieces of my eyelids, but I tried to keep my spirits high regardless.

I took the 1mg of Ativan prescribed to me an hour before the procedure that was supposed to take the edge off the obviously anticipated fear. Looking back I can say with certainty that this pill did nothing to calm anxiety.

I arrived at the hospital on time and after a half hour of waiting

I was admitted into the operating room.

Everything from start to finish felt very rushed and unfriendly. There were no attempts to make me feel comfortable and my glasses were stolen from me the second I entered the room. I became completely blind without my glasses and all the nurses and doctors in the room soon became faceless shadows.

I was told to lay down on the operating table and was draped with paper from head to toe, including layers of thick absorbent tissues being wrapped multiple times around my head. 

The bright lights above were turned on and the doctor, without warning, was soon pressing a large needle above my eye. Without hesitation and not a moment to catch my breath, another was being pressed into the same area only millimeters away; up to four times in each eye. 

I soon found out what the absorbent tissue wrapped around my head was for when I felt blood streaming down my face.

The doctor then pulled down each eyelid and inserted a needle into the hidden fleshy part of my eyes.

At that point my eyes were numb enough not to feel the doctor beginning to sew through my eye lids, leaving the strings hanging long in front of my eyes.

These strings were then used to forcefully pull my eyelids inside out and clamped upwards, leaving them unmovable.

While I didn't feel the sewing I did however feel the flaming hot blood cauterize immediately being grazed repeatedly over my eyelids. I let out a little cry in pain and flinched away. This is the exact moment I felt like the surgery spiraled out of control and I began shaking uncontrollably in fear.

The doctor then held my face and forced two more needles into my inner eyelids unannounced in attempt to numb any sensation further. He asked me to sit up and angrily told me that there was too much fluid in my eyelids now and it was pooling up under my skin, making me in-operable at that point. 
As he exited the room he asked a large male nurse to sit at the end of the operating table and instructed him to massage the fluid into my skin further. He began massaging all around my tender eyelids and put heavy pressure directly on my freshly needled areas, sending shooting pains down my entire body. 

This was when I began to cry uncontrollably.

(Swelling/Healing)

After about five minutes the doctor reappeared and began using the blood cauterizer on my eyelids again. I could feel my heart racing faster and faster and chest pain developing. I mentioned this to the surgical team and as quickly as the surgery started the frustrated doctor called an end to it after feeling my pulse. 

If you have been following my story from the beginning, you know that I developed a permanent heart condition called supra ventricular tachy cardia, which requires medication to slow down a constant rapid heart rate. The anxiety of the surgery and my inability to properly freeze made my heart rate off the charts and the surgery was called off.

I was devastated.

I waited months for this procedure and the girl who developed so much strength during this substantial two year battle with Graves Disease had finally been defeated - five surgeries in.

I cried and begged the doctor to finish regardless of pain because I was so scared of letting people down. My friends, family and co-workers pumped me up for weeks saying I could do this.

Admitting I couldn't was heartbreaking.

(The morning after surgery)

The doctor unclamped my sky high inside out eyelids, cut the strings hanging off my eyes, unwrapped me from the layers of paper piled atop me, bandaged my eyelids and told me to go back to the waiting room and walked out, obviously frustrated at me and the failed operation. 

I sat there crying and said there was no way I was going to sit in a public waiting room with handful of gauze covering my one bleeding eye and no way to contact my family. 

The male nurse took pity on me and walked me to another vacant room away from prying eyes and offered to call my mom for me. She showed up with my sister Lauren mere minutes later and off we went home. I spent the rest of the day in bed, extremely nauseous and unable to see anything in front of me properly due to double vision.

Fast forward two days later. Every night since the operation I had nightmares and I was absolutely unable to even think of the operation without bursting into tears regardless of the time of day. I sit here mere days later with swollen, bruised and burned eyelids from the blood cauterizer. 

One eye is more swollen and now one eyelid sits higher than the other. I'm praying that this is just a healing complication and not permanent from the stretching endured during the operation. Blood has also painfully pooled up in my eye multiple times since surgery.

(The swelling that caused my eyelids to sit at diffrent places)

 I was absolutely adamant that I did not want to write this blog right after the surgery because I didn't want the world to know how heartbroken, upset and ashamed I am that I couldn’t finish it.

However, I have always been a firm believer in educating about the up’s and down’s of this horrible disease and if I didn’t include it, I would be lying to the public and myself. I trust that that everything happens for a reason and how the events played out that day were exactly as they needed to be. 

When I was investigating this operation I couldn't find anything on Google to tell me exactly what was going to happen during the surgery. All that was available was one Wikipedia page and countless ad's for American doctors who are more than willing to perform the operation on people insecure about their appearance.

As always I include pictures on my blog, admittedly unflattering, because I hope to help other people make an informed decision about the surgical choices available to them. I learned that this form of operation wasn’t suitable for myself and my family & I are currently exploring other doctors and methods to complete this transformation.

 (The power of makeup - covering burns from the blood cauterizer)

Knowing I will have to endure this procedure one more time is weighing heavily on my mind but I am thankfully reminded numerous times by loved ones that I need to take things one day at a time. Anything worth having does not usually come easily and knowing there is a possibility that a surgeon can fix my flaws so the teasing and mean comments about my eyes will stop means more to me than dealing with the pain of a few dozen stitches. 

I will take this experience as learning opportunity and gain strength to beat the surgery next time.

I am truly thankful for all the support I have received over these last few weeks from family, friends, co-workers, and complete strangers. I don’t think I could have even stepped foot into that hospital if I didn’t have you cheering me on. While I am disappointed in the outcome, I am humbled and grateful for being reminded about how great my support system is. Your kind words both before & after the surgery were cherished and got me through what I would consider the toughest, most painful situation this disease has ever put me through. 

Thank you endlessly for always being there for me.


I would also like to extend a special thank you to Tamara Plant, the creater of the FIERCE awards, of which I was nominated for recently. I unfortunately missed the ceremony due to this surgery, however I am grateful of the kindness shown to me and the friendship developed between myself, Tamara and the other women who were also nominated. 

Thank you for empowering me to feel FIERCE during some of my darkest days!

(My awesome co-workers sent me this during my recovery!)


"Everything in life occurs as part of a spiritual plan.
Remember that it is through the negative that the positive is appreciated."


-Rayanne

 

“Happiness lies for those who cry, those who hurt, those who have searched, and those who have tried for only they can appreciate the importance of people who have touched their lives.”

"Dear universe, fate, destiny, karma & all events that have led me to where I am today...I want to take a minute not to ask for anything from you but simply to say thank you for all that I have. 

I am blessed in abundance with great friends, a supportive family, a loving boyfriend & job that includes co-workers and experiences that warm my soul daily. Even though I still have some rough times ahead I am a believer that everything happens for a reason... I trust that every heartache, disappointment, experience, struggle and achievement will mold me into exactly who I should be and lead me to where I belong."

It has been said that when one's passion dies a part of a persons soul and entire being dies with it too. 

For over two years now I have been in a continual fight against Graves Disease. 

Until recently, I thought it had robbed me of nearly everything that kept my spirit thriving

and permanently labeled me as just another victim of the disease.

There was a time where I was stripped of my job, my passions, life experiences and even organs! Armed with multiple notes from my doctors for time off I still spent months unemployed with no income and a government who told me to sell the only possession that Graves Disease hadn't robbed me of, my car, and live off that money to pay bills. 

I remember the moment when I sat alone in my car in the Service Canada parking lot sobbing uncontrollably knowing I had no income and two upcoming surgeries.

"Life is what happens when your busy making other plans."

Reflecting on the possibility of parting with the only item I could still call my own to keep afloat was when I truly understood what 'hopeless' felt like. I wasn't sad at the idea of loosing another possession to Graves Disease...I was used to that after two years...it was that my scratched up well lived in Chev Cobalt (affectionately named "Big Red") was symbolic of the last spark of light in my soul that was keeping the fight in me going. 

After a good fifteen minute cry in a parking lot, oblivious to the dozens of people walking by watching me, I wiped my tears and decided I wasn't going to be labeled another Graves Disease casualty. 

I promised myself that this was going to be a building block and learning experience to who I was going to be as a person in life. I made a pledge to myself on that day that when I got better I would give 110% at whatever I did; help as many people as I could; appreciate even the most minuscule good in my day; and rebuild myself stronger than ever mentally, physically and financially. 

Because after all;

Sometimes you have to be knocked down lower than you have
ever been to stand up taller than you ever were ;)


("Big Red")

"When one door closes another door opens; we often look so long and so regretfully upon the closed door, that we do not see the ones which have been opened for us."

I have always been a firm believer that good things come to those who wait and I'm elated to share with my readers that my expectations have been exceeded in these last few weeks of my life. 

If you read my blog regularly, you have witnessed my emotional up's & downs, my multiple surgeries, the development and conquering of new medical problems along with the pain and growth during my illness.

It was one month post eye decompression surgery when seemingly out of no where an angel reached out to me and offered me the opportunity to change my life. Her name is Deb Cautley and she runs the Youth Empowerment and Support Services in Edmonton. 

Deb invited me for lunch to tour the buildings that are fundamental in improving and guiding the lives of youth who come from difficult realities and by the end of our meeting I walked out with a job. 

Neither of us knew exactly what I was going to be doing there but Deb was adamant on just having my energy there after reading my blog over the last several months.

I have been employed at YESS for a few weeks now and I don't just feel like a worker there; I ultimately inherited another family. I have amazing people who have embraced me with open arms and accept me as I am. I am reminded almost daily that I am making a difference and always welcomed with a hug and smile when I walk into managements offices. 

After being rejected multiple times while applying for jobs when mentioning that I still have another surgery in October, Deb was a breath of fresh air assuring me that YESS would support me during that time. Most of the staff is aware of my blog or have read it so after the first two weeks I didn't feel as self conscious walking around with eyes that always look surprised.
(However I must say- I am becoming quite the master at disguising them!)

I credit Deb and the whole YESS organization for rekindling my passion for life and most importantly for being the reason I have the strength to keep fighting this disease. I now have a beautiful office to call my own and something to look forward to each and everyday.


(my office)

That being said I am reminded daily that I still face challenges medically. I have recently been put on another heart pill to control the chest pain I get multiple times weekly. I still have SVT (constant rapid heart rate) that I take pills to control but it remains a huge energy drain and i often nap as soon as I get home from work. 

The double vision the doctor said should go away hasn't and when I look any way other than forward, things are blurry. I have not felt pretty since the day before my last surgery. My double vision is at its most extreme when I try to look in the mirror and I can never apply make up evenly, or properly, with my limited vision of it. I also never feel fully engaged in any situation or converstation anymore because with things always looking blurry, I can never feel connected to the moment.

I am only about 30 days away from my next surgery, blepharoplasty. The anxiety of getting a surgical procedure for 1-3 hours while awake is setting in heavier with each passing day. I will spare you the gruesome details if you have a weak stomach but if you want to learn more click below.

http://en.wikipedia.org/wiki/Blepharoplasty

This disease has tried to kill me, to blind me, left me with funny looking eyes, made my hair fall out, taken my organs, marked me with multiple scars, completely changed my life and people continually ask me how I stay so positive.

Simple...I'm still here.

I also wanted to share my most recent accomplishment; being nominated for The Woman of the Year FIERCE awards. It is an honor to even be considered for an award like this when you see all the amazing women (including my boss Deb Cautley!) who are also nominated.

This blessing was made entirely possible by another angel, Debra Ward, who took the time (unbeknownst to me!) to put together all required information needed to qualify.

Since she has done so much for me and is an avid reader of mine, I wanted to ensure she now has her own permanent section on here! :)

I am forever grateful for her endless support and encouraging words.
 Thanks for everything Debra!!

http://youarefierce.com

I feel so lucky to have been given a second chance to learn, love, appreciate, forgive, and accomplish great things. I am surrounded by some of the coolest, most awesome, CARING people alive. 

The emails, notes, cards, and messages I have received over these last two years, but mostly this last month especially, has amazed me. So a big THANK YOU to everyone (you know who you are!) for taking the time to congratulate me on my new job and award nomination. 

Your kindness is cherished and encourages me to keep going in my mission to raise awareness for Graves Disease. I truly wouldn't have gotten to where I am today without all the help from those who reached out to me.

As always, a special thanks to my family and my boyfriend for showering me with endless love. Thank you for being my biggest cheerleaders and supporters. [M.F, K.F, L.F, J.P, A.T]

I hope that if you are struggling with something in your life right now that you find the inspiration and strength needed to overcome all obstacles, wherever it may come from. 

If I could pass along any wisdom I have aquired while battleing this illness; it would be to never take today for granted. The only time that we are promised is this very second and it is up to you to make the most of it.

I will be back at the end of next month to update with pictures post surgery.

Here's to being one step further along my journey in the fight against Graves Disease!

“To get through the hardest journey we need take only one step at a time,
but we must keep on stepping”


-Rayanne

"Being happy doesn’t mean that everything is perfect. It means that you’ve decided to look beyond the imperfections."

I am now over a month post surgery and I've had a lot of thoughts brewing about the people you meet in life and living with Graves Disease. Not one to shy away from sharing my experiences; I'd like to introduce you to...

Daily Thoughts of a Graves Disease Patient


On strangers:

Before surgery, the absolute worst comments I got about my eyes were people asking;
"why are they so big?"  

The best comments I got were also;
"I wish my eyes were big like yours!"

(Talk about 'Beauty is in the eye of the beholder!) 

I could handle people commenting about the appearance of them because I did my damndest to use makeup trickery to conceal their true identity. What I'm having trouble with post eye decompression surgery is the abundance of rude strangers who feel the need to point out to me that it looks like I'm staring, surprised, or when they widen their eyes to mimic how I look from the eyelid retraction.
(You don't get to see pictures but you can catch a view of it in my CTV story) 

While they now look visually smaller post-surgery, daily squinting doesn't make them look 'normal' for the most part. I've been told that I looked better pre-surgery by my family doctor and had both of my 'girls nights out' since surgery ruined by strangers comments. I hate to admit it, but I will most likely be staying home until after my next surgery to correct it unless absolutely necessary.

I would love to trade lives with the ignorant for even a day to see what I go through. I have recently turned down a job working in a public area because my mind has been trained to think that my eyes are so noticeably off putting that I shouldn't be scaring people with them.


I feel like I need to walk around with a button that says;

While my ego's bruised and tears have been shed, I have also learned something from this...

That I need to fight harder to bring awareness to Graves Disease and it's symptoms.

I will not rest until the public is educated on the physical manifestations this illness causes so no other patients will ever have to feel as hurt as I am by strangers comments. Just as Down Syndrome and Cancer patients generally resemble similar... Graves Disease patients also have our own unique looks too...not by choice, but just like our surgical scars; we wear it as a badge of honor for being one hell of a fighter against our illnesses.


On the flip side, I also want to thank the handful of strangers who have recently approached me in public wanting to talk about the news story they saw about me on CTV.
(Especially the cute asian cashier at London Drugs who barely knew english but wanted to know more about me; you made my day!)

"The happiest people have lived the hardest lives"

On Sympathy:

I've been a lucky girl having such wonderful people in my life. I've received beautiful emails and gifts from many people since being diagnosed with Graves Disease in 2010. Although appreciative I don't feel like I deserved them. 

As you read this, think about your day to day life; the majority of you work regular jobs, enjoy time with friends etc. and this is your 'normal'. While it used to be mine my days in the last 2 years have been replaced with regular blood work, specialist appointments and surgery. While foreign to most, my mind now finds comfort in calling it my 'new normal'.

I've been asked to do stories for the media to speak about my journey a few times already. During correspondence with the reporters I always stress the importance of not putting a "poor her" spin on the story after one bad experience with a published piece. I admittedly get mixed feelings when people tell me that reading my blog makes them appreciate their own lives more. I'm trying to figure out when I became the girl who didnt 'have it all.'

On the Importance of Smiling:

If you asked someone who spends time with me regularly to describe what I'm like I hope that they would agree that I'm "always smiling". I can be thrown into a pit of eternal darkness and doom but can still find a positive in the situation. (Glow-sticks party anyone?)

While beyond grateful for the compliments of new found appreciation for a person own life I generally end up over analyzing the comment. There has never been a time where I have felt unappreciative of the life path that was given to me.

I'm going to have 5 surgeries? Some have ten or more. 

I've had my blood taken hundreds of times? Some get blood transfusions regularly. 

I spent a month straight in a hospital? Some spend years. 

It is truly impossible to gauge the pain and suffering mentally or physically of one disease or illness to another because they are all so unique in their symptoms.

I hope when people tell me they will appreciate their own days more it is not because they are glad they haven't had to endure the pain and tears from surgery...it is because they read my words and see that attitude is everything.

If I could wish anything for the people who read this blog; it is that you are inspired to do what makes you happy, spend more time with loved ones, learn to expect the unexpected, make the best of a bad situation, and be kind to others.


Have a great summer & stay cool... wherever you may be reading from!

Cheers!

-Rayanne

 

"Turn your wounds into wisdom.”

CTV Edmonton News Feature

As promised, here is the link to the story our local news station produced on Graves Disease!
Please click below to be directed to their news site with the video.
(It it the first video on the list that comes up)

http://www.ctvnews.ca/search-results/search-ctv-news-7.137?q=graves+disease





NEXT STOP... ELLEN! =)(I will sit here and wait patiently for that call, ok Ellen?)

Also, I would just like to highlight one of the many beautiful gifts I have received while battling this illness as it holds an extra special place in my heart...
I finished my last post with this line;
"But if anyone has a rabbits foot, crystal ball, four leaf clover or wish bone they can spare for good luck; can you maybe send it my way? ;)"

Well, guess what I received in the mail a few days later from a dear family friend 'K.J'...
(click to enlarge)
|

How cool is that?! I have never had my words literally 'come to life' ... Until now.

So with that I would like to leave you with a few simple words...

Always believe in the impossible.

"Challenges are what make life interesting; overcoming them is what makes life meaningful."

This post is about the effects of this bracelet. While made of delicate removable paper, it never truly 'disappears' when dealing with a long term illness. I have more of these in my memory box than most girls have of actual jewelry accessories. The bracelet symbolizes some of the worst days mentally and physically of my life. Sadly, it is also dictated by it. Every time a person visits a hospital for an appointment or surgery, it is there to welcome you. To mark you as another inmate behind the invisible prison bars of the hospital walls.

I normally try to avoid writing on days where some aspect of this illness has made me upset. However, if i want to be realistic with my readers while batting the evil side effects of Graves; keeping a constant smile on my face sometimes gets tiring.

 

My biggest struggle is reminding myself not to feel guilty for being sad on rough days. Well I don't let myself have many of those, today left me feeling particularly soul numbing.

I went for my post surgery visit with my eye surgeon today where it began like every other visit I had been to previously... with freezing drops being put in my eyes. This time is was especially unpleasant considering my eyes are still very tender from surgery. To describe freezing drops to someone who has never experienced it, I'd say it's more like a liquid that freezes your eyes in the forward position rather than a numbing agent so you wouldn't feel pain. Although i am not 100% sure, it seems to act as an aid to the doctor when using instruments to uncomfortably measure eyes while running tests.

After my measurements, I asked the Doctor what the difference in my eyes are since the surgery. They had taken 4mm of tissue out from behind the left, and 5mm out if the more bulgy right eye. It may not seem much, but in eye positioning measurements, that's HUGE.

(click to enlarge)

Technology is amazing because when telling a doctor that I still have post surgery double vision, I had no idea they have ways of not only confirming it, but they can tell exactly which way (up/down or side-to-side) the double vision is occurring in each eye. I was told that it should go away, but it is not guaranteed and still has the potential to require further surgery on the eye muscles to correct it.

Because of the severe lid retraction, I was also given the date of my next surgery (Lucky number #5?)

October 18th 2012

The definition of lid retraction is when the top of a persons eye lid sits abnormally high and can only be corrected through surgery. It leaves sufferers with the appearance of always being welcomed into a surprise party. While an appropriate reaction to an unexpected event, it is not as cute to always be walking around resembling as so.

My eyes used to sit perfectly pre-graves diagnosis but through repositioning them, things shifted and now need to be adjusted. I think what makes me the most upset that I have to walk around until October with abnormal looking eyes since it is the first thing everyone notices about you when you meet them. Although i squint to project a more normal appearance, it isn't an 'easy fix' with false eyelashes like proptosis was. So, pardon me while I wear my sunglasses in public 24/7 for the next 5 months.

This surgery will be more focused on flipping the eyelids inside out and doing the cutting/removing of extra eyelids from the inside so there isn't a visible scar, and yes, it is all preformed while awake. Que panic attack. It also has a 2 in 10 chance of scarring the inside of the lids so bad that they would sit at different places on the eyeballs that would require 2-3 more surgeries to fix.

Depending on the outcome of the upcoming surgery, I could be (hopefully) finalizing my hospital bracelet collection, or adding up to 3 more.

In January my family had to cancel a trip to Hawaii to accommodate my medical situation, and now the trip we had been planning to take to San Diego in October for the yearly Graves Disease conference is cancelled in light of my newest surgery date. I would like to appologize to them now for always being the source of the cancellations.

Pondering my options for work while anticipating this upcoming surgical adventure has left me scratching my head. I feel like I should be used to completely rearranging my life to accommodate this cruel disease, but the stress of the unknown is weighing heavily on my mind this evening. Feeling like I'm missing out on so many great experiences and memories like most people my age to accomidate a life lived in and out of hospitals can get even the toughest soul down sometimes.  

Challenging events like these remind me how grateful I am to have a family who lifts my spirits (my mom made my favorite homemade veggie soup and shortbread cookies today!)
Aswell as an online following that sends me such positive energy...

 

But if anyone has a rabbits foot, crystal ball, four leaf clover or wish bone they can spare for good luck; can you maybe send it my way? ;)

”Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?"

-Rayanne

“I certainly don't regret my experiences because without them, I couldn't imagine who or where I would be today. Life is an amazing gift to those who have overcome great obstacles, and attitude is everything."

I wanted to post an update on my situation and share with you something I am very excited about. For those who have not heard yet..‎.

I am meeting with CTV Edmonton's Carmen Liebel soon to create a story for Graves Disease awareness. My mission since day 1 has always been to educate people on this mysterious illness and through my blog, print & tv ... I will get there; so the patients of the future will be more accepted in society than I had been at times. (If you miss it when it airs, don't worry; I will be posting the video on my blog!)





 I am a few days away from my 1 month post Orbital Decompression Surgery date. After many uncomfortable weeks, most of the healing is complete.

Is my double vision gone?

Mostly but not completely. I can see distance easily but when I need to see something close up I still get bad double vision. This has left me with some clownish make up and interesting hairstyles on some days. It is impossible for me to look any direction other than forward without straining my eyes and getting blurry double vision. I feel frustrated and trapped in my own body loosing the perfect vision I used to have. I also find it overwhelmingly stressful to be in crowded areas because I can't get a full visual of my surroundings.

Do my eyes still hurt?

Yes. My eyes bled multiple times up until about 2 weeks after surgery. I can't rub them and wiping off makeup is a time consuming project because I need to do it so slow and gentle so as to not irritate my already sore eyes. I also noticed my inner rim lower lash lines and tear ducts are completely numb. I have zero feeling to the touch which is a very awkward feeling.

Am I 100% happy with the results?

No. I wish I didn't have double vision which I am worried will stay that way permanently since it still continues after the swelling is gone. I constantly tilt my head upwards a bit because somehow it is the easiest way to get the clearest vision although that creates the "staring" appearance I had pre-surgery. It will stay like that until I get the second part of the surgery to lower my eyelids to accommodate the new position of my eyeballs. Is it an improvement cosmetically looking? 

Yes... But was it worth it? I am still deciding.

Do I look exactly how I used to?

No, and it's difficult to accept that I never will again. However;

“I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them.”

So, I debut to you, my new "peepers"
As of 23 days post surgery...




 


I have a follow up booked with my surgeon on June 16th where I will most likely get a general time frame for the date of my next surgery called "Blepharoplasty". It is a surgery to remove and lower part the eyelids and is preformed while the patient is awake. <--- (Why?!!)

It produces the same type of swelling and needs the same recovery time/after care as my last surgery. I will post more information about this super-creepy operation when the time gets closer or feel free to click the link below for some fantastic information with some before and after surgery pictures.

http://www.eyelidsurgery.co.uk/treatments/blb-eyelid.htm





I would like to extend a great big THANK-YOU to all my wonderful Facebook friends and Twitter followers for sending me so much love and encouragement while I was bed ridden. You were the sunshine in my recovery days and thank you for thinking of me! Throughout this terrible time in my life the highlight has been making 'many' new friends for which I am very grateful.  Your support has meant everything to me and I greatly value my new friendships!





I'm a big believer that the day is wasted if you don't utilize it to learn at least one new thing.

Therefore; I present to you;

Did you know? Graves Disease Edition...

-Graves’ disease was first discovered by Robert Graves in 1835, who linked a pattern between a patient’s goiter with other physical manifestations.


-Graves’ disease affects women 10 times more commonly than men.


-An autoimmune disease occurs when the body's immune system becomes misdirected and attacks the very organs, cells, or tissues that it was designed to protect. About 75% of autoimmune diseases occur in women, most frequently during their childbearing years.


-Graves' disease occurs in less than 1/4 of 1% of the U.S. population.


-Some things we're told are good for us -- like fluoride and soy -- are not good for thyroid health.


-People with Graves disease must avoid food items that contain iodine. The thyroid gland uses iodine to produce thyroid hormone, so too much iodine exacerbate's Graves symptoms.


-Only 5% of all patients diagnosed with Graves disease will have eye symptoms severe enough to warrant an orbital decompression surgery.


-Did you know this blog was purposely created with a dark background because it is the easiest to view on sensitive Graves Disease eyes?

Now you do!






Thanks for stopping by; I will update again soon!

-Rayanne