"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.