A few of the various hospital visits

A few of the various hospital visits

Friday 22 June 2012

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)
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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.

Tuesday 19 June 2012

"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

Thursday 14 June 2012

“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