"You were given this life because you are strong enough to live it."

Well friends; 

 

Welcome back to my blog. I wish I was about to share some great news, but it appears that after a few steps forward, I've hit a set back in my fight against Graves Disease.

I am on my way to surgery #7. 

I have been documenting my progress mostly on my social media but this newest information is so ... bizarre, that I felt a blog post was more suited in the off chance that patients reading from across the globe might be able to give me some feedback on their experience. 

After my last surgery, my eyes looked great. No more 'surprised' eyes. They weren't 'my' eyes, but they were 'better'. Dare I say... I was happy? 

But mere months later, I noticed that one of my eyes started drooping on the bottom lid. 

I had seen this happen to others on Graves Disease forums that I follow so I wasn't surprised when it happened to me. 

Basically; because of the previous surgeries on my eyes, the trauma in the area caused to lower lid to 'collapse' for lack of better words. More white shows under one of my eyes than the other, as seen below. Some days it sags worse than others. and there is no guarantee that it wont get worse over time.  

I made an appointment with my eye surgeon at the hospital and headed in yesterday. 

What he said shocked me. 

He told me that I'm eligible to get another surgery to fix the droop... But the options? 

They can either cut cartilage out of my ear or remove a solid piece from the roof of my mouth and implant it into under the skin of my eye to build it back up. He warned me that it is very painful to do so however.

The other option is to accept eye tissue from a deceased donor. They would take a piece of the white part of the eye and fix it that way instead, avoiding having to transplant your own tissues. I chose this one. 

It's the less invasive option, but still a little unsettling to think about having a piece of someone else's eye implanted into my skin. 

Upon the surgeons inspection, he also found that my top eyelid has also retracted a bit, leaving me unable to fully close my eye again, so I will have to do another lowering procedure at the same time. Mornings are uncomfortable as the open space leaves hard spots in my eye from drying out. 

And the worse part of this situation? 

I'll be awake for all of it, again. 

I had such an emotionally draining experience last time and the surgery was the most difficult thing I've ever had to do. There is just something so incredibly unnatural; about being awake and strapped down while getting sliced open. 

While all of this sounds scary and overwhelming, I know deep down that I need to do it to try and make myself happy again.

I'm not the type to complain but, have a confession to make. If one more person tells me that it's not a 'big deal' and tries to convince me to change my mind, I'm going to scream.

Please don't forget; I lay it all out on my blog, but people still only see what I want them to see.


That means, I find myself squinting in person and pictures to try and hide the way my eyes actually look. 

I know it's an attempt to try and reassure me that it's 'ok' to look that way, but I would please ask for your support in this difficult decision. 

To me, it doesn't matter if people say that they ‘don’t notice’, I do. I have to live with it and walk around like that, not them. 

I truly hope that these people never have to make a decision about getting multiple painful surgeries to fix imperfections that they didn't ask for. 

It's torture. This isn't a decision I want to make, it's one I have to make. 

I'm too many surgeries, stitches and needles in to give up now and quit half way.

I gave up a lot to get this far.

         

Granted, with all the other things that could and have gone wrong, having to make a decision about more of a cosmetic procedure and not organ removal surgery again, I’ll happily take this option. 

I have to wait six months to make sure my eyes aren't protruding again as they are currently unsure. But if my measurements stay the same; they will then put me on the list for a surgery date, potentially sometime within the next year to a year and a half. 

Just another speed bump along the road. 

Lastly, while I have you here...
I want to say, please sign your donor cards if you haven't already.
You never know who you might end up helping... It could be someone just like me! 

With love; 

Rayanne 

Important Message!

As of July 30^th 2014;
The Graves Disease Foundation of Edmonton became a legal society and able to operate in Alberta. 

Rayanne Forbes, is pleased to announce that the Graves Disease Foundation of Edmonton will be fully operational and ready to accept donations from the public within the month of August 2014. 

We are now also in the process of getting CRA (Canadian Revue Agency) status so that we can give out tax receipts for donations. 

In short; Graves Disease is an auto immune and thyroid disorder  that randomly attacks parts of the body causing immense pain, discomfort and suffering. The foundation has been formed to assist people who have been inflicted with this disease. 

Rayanne, specifically, has endured six separate surgeries; three times on her eyes; she has had her gall bladder removed; her thyroid removed; and a double hernia related to the disease over the past four years.

She has chronicled each and every surgery in her blog – rayannesthoughts.blogspot.com - which has been read by 40,000 people from around the world thus far.

Rayanne has received contact from other Graves Disease patients from around the world in places like the Philippines, Germany, Russia, England and the United States to name just a few.

The Graves Foundation of Edmonton will assist patients who accrue medical bills that are ‘not’ covered under normal insurance and benefits plans.

The costs of medication, dental and even overnight hotel/motel stays will be considered for coverage for those seeking treatment who are not from the Edmonton area.

Areas eligible to be considered for coverage: Edmonton, St.Albert, Sherwood Park, Beaumont, Leduc and surrounding areas within 200KM of Edmonton. 

Amount covered per person will be on a case by case basis and subject by donation availability.

We will host yearly support meetings for patients to meet others in similar situations and discuss how the disease has changed their life. 

Graves Disease is an extremely costly illness to battle.  Rayanne’s recent dental bill was close to $5,000 to cover the 14 cavities caused by the pills she was taking for Graves that was drying up all the protective saliva in her mouth. In addition; her first two years of medication cost $10,000. 

The Graves Disease Foundation of Edmonton is proud to be able to assist patients to avoid financial devastation and offer support through this difficult and lonely journey. 

The Graves Disease Foundation of Edmonton’s website will be online shortly. Direct links to donate as well has the option to apply for future coverage are available on our website. 

For further information...

Media Contact:
Rayanne Forbes

Rayanneforbes@me.com 

With Love;

Rayanne Forbes and the whole Graves Disease Foundation of Edmonton team.

"Let the rain wash away, all the pain of yesterday."

 

There I was strapped to the operating table again, squinting at the blaring white lights above me while trying to ignore the haze of nurses whirling around me.

The room was familiarly chilled like the meat locker I remembered it to be.

As the medical team crowded above me, ready to start the surgery, I broke down and sobbed.

I was so used to being the guinea pig throughout the years because my illness is so unheard of that the group of curious student nurses watching this rare surgery wasn't unusual to me anymore.

Since I had attempted this surgery before; I knew what to expect but that doesn't mean I was necessarily ready for it.

As I fought through the tears, the nurse stroked my arms and told me repeatedly in a motherly tone that "it would be ok."

I was calm. I knew it was now or never.



They tried to give me some kind of IV that was supposed to calm me down but it was more nauseating than helpful and didn't dilute the horror of the experience any.

The surgeon began sewing through my eyelids so that there were strings he could pull on that would hold them inside out for the procedure. Yes, you read that right. Cringe.

Once they were set, they were pulled up so painfully tight that it felt like they could rip right off at any second.

The surgeon began slicing a new crease in my inside out eyelids and immediately followed the line with a flaming hot blood cauterizer so that I wouldn't bleed everywhere while he was trying to work.

He sat me up to take a look at where my eyes were sitting three times.

A half hour later of cutting, adjusting and sealing later; it was over. I had 'normal' eyes again. Not the ones I had been born with, but an acceptable version of them.

The nurse then took a huge gob of medical Vaseline and whisked it over each eye. I was blind to the world and would be for the next 24-48 hours until it all dissolved into my eyes to prevent infection.

I was then whisked away to my suite to make room for the next victim, er... patient to use the operating table.

(Day 1)

I don't know if you've ever had a blood cauterizer used on any fleshy bits of yours but let me tell you, you feel like your ON FIRE where it touched you.

I laid in my hospital bed, blind, with an ice pack wrapped around my face, rolling around crying and having a panic attack from the pain. My poor Mom felt helpless and tried to hold my shaky hand through it.

Keep in mind that I wasn't under any sedation or painkillers numbing what just happened.



The hospital released me the same day and my parents carefully lead me down the stairs and to the car while I used my giant Lady Gaga shades to cover my eyes from all the people staring at me.

My eyes leaked blood for hours and my cheeks were stained red from the tears.


(Day 3)

Unfortunately when I got home I discovered a hole in my eyelid that required me to go back the next day and get re-stitched over my already tender eyelids.



I took the needles to my temples and eyes to numb the sensation and watched while the doctor sewed me up like a rag doll.

The next few days of healing were nothing short of rough. Numerous times a day I had to reapply the Vaseline and anti inflammatory drops. The headaches were and continue to be debilitating.


(Day 5)

I still hear the haunting sound of my skin ripping slowly and the heat of the cauterizer when I lay my head at night. I now wait for the inflammation to settle and for the stiches to dissolve so I can carry on with life again.


(Day 7)

The physical scars will heal but the emotional ones are another story.

 Which brings me to the next thing on my mind...

"I don't know how you do it."

It's a saying I hear all to often about my battle with Graves Disease.

The answer is simple; because I have to. I like to think that anyone fighting through an illness believes this.

We're no stronger than you, we just do what we need to and hope for the light at the end of the tunnel.

I also believe that having a positive outlook has a huge impact on your recovery as well.

The next follow up phrase usually goes something like this;

"I could never do what you have."

I am humbled at the comment but if I'm being honest, I have a unique outlook on the word 'pain'.

Is pain purely physical? Absolutely not.

Emotional pain and physical pain sting the same in my book.

I still cry sometimes when I look back and think about some of the things this disease has put me through, not because it still hurts, but because the memories bring up a really trying time for me.

Every blog post you have read in the past was typed with tear soaked keys as I relive and share my story.



I've always cringed when well intending people say "I will appreciate my days more because of what I've seen you have to go through" because I never really thought I have it tougher than most.

Beyond Graves Disease, I have been abundantly blessed by the loved ones in my life.

Anyone can handle physical pain but I would crumble if I had to do without the support from my parents, siblings, partner, co-workers and friends.



People struggle in all sorts of ways, often bearing more weight on their shoulders than one should ever have to and certainly more than they will ever lead on to others.

I've been watching the news a lot lately and been left in awe at witnessing people trying to rebuild after tragedy whether that means the loss of a loved one, an accident, a fire, and so on.

While my struggles were visibly written on my body at times; the trials some face on daily basis and the personal and irreplaceable losses they have felt is what true resilience means to me.

It's a type of raw strength I fortunately don't feel that I've had to experience yet but that I truly admire and hope to capture more of with my job at The Edmonton Examiner in the future.

So here's to you; The survivors, the wounded souls, the scarred, those who have loved and lost too soon, who have shed tears late at night because of the words of another, those struggling emotionally or financially, those who held on too long, and most of all, those who still get up with a smile on their face even on the seemingly hopeless days.

Whatever you're fighting; stay strong.



With love;

Rayanne.

"Let your faith be bigger than your fears."

February 15th, 1:43pm: My cell phone rings.

A completely unexpected call came in; although I had spent the last year of my life waiting for it.

It's safe to say when you see a doctor’s name on your caller I.D; it's never for a good reason.

This call was no exception either.

The nurse on the other side of the phone tells me that my number in line waiting for surgery is up.

She asks me to write down the date "March 12th"

That day will mark surgery number six for me since I've been diagnosed with Graves Disease.

SIX surgeries? I will officially have more surgeries than most people have pairs of shoes!

The surgery is a reconstruction version of a ‘blepharospasty’ and is supposed to erase the last out wards reminder that this illness has written on my body. 

Basically; they will try to repair my eyes that have been stretched from the bulging I experienced prior to my orbital decompression surgery.

My surgeon will be essentially cutting a ‘crease’ back into my eye and removing all the excess skin/tissues that has pooled up over my eyes as a result of the up’s and downs of this disease. 

It's actually my second attempt at the surgery because I wouldn't freeze properly the first time on October 18th 2012 and it was subsequently cancelled half way through. 

I remember feeling the doctor injecting numbing needles six times in each eye, I felt and saw him sewing through my eyelids and I felt the blazing hot blood cauterize grazing the bottom of my eyelids repeatedly. 

The trauma to the area made my eyes bleed multiple times while healing; which ended up being a great Halloween party trick!

I can’t lie though; I've shed more than a few tears thinking about that day. I felt so let down and disappointed that I wasn't physically able to complete something I wanted SO BAD. 

It still goes without saying though; I'm admittedly a little terrified to try it again.

Yet I’m trying to focus on all the positives that will result from the surgery.

No more 'surprised' looking eyes and no more uncomfortable ‘anime-esque’ circle lenses to try and hide what I don't want other people to see.

 

But most importantly to me; no more strangers making hurtful comments about what they think of my eyes.

I’m ready to give up the whispers, the constant wondering and the rude observances people feel the need to share with me about why my eyes look the way that they do.

Are funny looking eyes the worst thing in the world? Absolutely not, but when it’s the first thing people look at; I get a little tired of feeling obligated to give people the answer their looking for. 

Its also tough accepting this new appearance I didn't ask for.

This surgery will hopefully finally erase the last “Graves Disease Badge” that I’m forced to wear every day. 

Plus; I haven’t actually been able to close my eyes all the way for the last two years so when I wake up I usually have an uncomfortable hard patch in my eye from it drying out which I am looking forward to being fixed.

While I will still be awake and responsive like the last time they tried to fix my eyes; I'll be less coherent... Hopefully. They are going to try a different type of anesthesia to calm me down. 

The risks of the surgery include permanent injuries including blindness and the risk of my eyelids sitting at different places during healing that would result in more surgeries to fix in the future. 

As always; I will take lots of pictures to be posted afterwards to let you know how it goes.

I've also been experiencing more concerning heart problems within the last few months. 

If I’m being honest; sometimes it just feels like I spend my days waiting for the next problem to develop and some days I feel lucky when I even have enough energy to get out of bed.

After countless doctor and emergency room visits while suffering unexplained heart pain; a recent visit with my cardiologist has finally given me some answers. 

I’m talking the ‘drop you to your knees, heart stopping, hard to breath’ kind of pain when trying to describe what I feel when it happens. 

Often being told they can’t find anything wrong and sent home; my cardiologist decided to test my 'C-Reactive Protein' or (CRP) blood level during an episode of chest pain and found out that I get swelling around my heart. 

One of the most obvious reasons that it took so long to discover the problem was because it is such a rare occurrence in people my age that doctor's usually don’t test for it. 

I am so thankful to be under the care of a cardiologist that took an (admittedly reluctant) chance at testing me for something that ‘shouldn't be’. 

I think were both going to be equally surprised with the diagnosis and treatment plan as she has likely not dealt with this specific problem in relation to Graves Disease much before.

While it’s great to finally have an answer; it’s a scary diagnosis. 

Swelling/Inflammation around your heart almost guarantees heart disease and heart attacks as you age.

Because I am learning as I go; I am starting to wonder when ‘that age’ will be.

Will this happen when I am 30, 40, 50...sooner? 

Because of the massive wait list at the Mazankowski Heart Institute; I am still waiting to attend my follow up appointment to talk about treatment options going forward. 

Since the swelling occurs randomly and suddenly; it will be nice to discuss the option of having a medication to control the pain associated with it. 

I will continue to update my blog with new heart information as I learn it myself. 

I’m so grateful for all my supportive friends, family and four legged pal Lola that have been at my side when I needed it most.

No matter what happens in the future, I will be take on each day with my head held high and a smile on my face because I’m truly thankful to have been granted another day to make a difference.

It has been said that the two most important days in your life are the day you're born and the day you find out why.

Sometimes I just sit back and grin at how much this roller coaster of a ride has enriched my life no matter how dark some days might seem.

Lastly; I wanted to share my newest endeavor with you... 

The Graves Disease Foundation of Edmonton is close to being ready for business! Check out this screenshot of my new website! Once fully established; I will start fundraising so that others effected by this illness will be able to apply for funding to cover their medical expenses!

(Did you know? Eye drops that help those affected by Graves Disease cost $500.00 a month! My heart pills also cost just over $4,000 a year! Can you see why we need to help?!)

Please don’t forget to ‘like’ and 'follow' our group on Facebook/Twitter for updates on our next support meeting in Edmonton.

While I am still 'cooling off' from being named one of Edmonton's "Sizzling Twenty Under 30" (haha, get it?) a few months ago; 

I have also recently been named a finalist in the WEGO Health Activist Awards for this blog! 

A HUGE thank you to the nearly 35,000+ readers world wide who have helped me earn this wonderful title!

Now that you’re all caught up to date with my Graves Disease journey; wish me luck friends!

I will see you once I’m all fixed up again!

Love always; 

Rayanne

Are you ready?

                          Launching 2014!