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
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