"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