Decision to undergo a major surgery...

I wanted the first post to explain the arbitrary symptoms I was facing along with the extreme confusion with the eye problems ..and then talk a bit about the emotional impact of the thyroid eye disease aspect of the disorder. In the near future, I want to post my experience with the surgery. I would be an example of a success story. My surgery was done by 2 phenomenal surgeons in Mayo clinic Jacksonville. They helped me partially regain my sanity! It's been a month and a half since the surgery. I am still experiencing some pain and discomfort especially in the mornings. But that was something I had gotten used to for quite some time now...And it'll never compare to the time when I rubbed my eyes and they POPPED out of the sockets. Sad, Painful, True. Would have made a great scene in a halloween flick.

Prior to Graves: I exuded confidence. I was in good shape, athletic, and gorgeous to myself and others. I was one of the few females in their teens who were completely satisfied with their appearance. I had everything going for me and I was proud of it! I also took it for granted. The great measure of my self-love makes the fall down the ladder of insecurity hurt so much worse.

First onset of eye protrusion: As I explained, I didn't know what was happening for several months. I thought it was something that was going to self-correct. In the meantime I was growing deeply insecure by the comments from my friends and family concerning the starry appearance I was developing and maintaining.

After diagnosis until surgery: Once I found out there was an underlying health condition causing this disorder, I felt scared, hopeful and hopeless all at once. For over 2 years I recoiled my self confidence considerably. I am grateful to have many other character traits and good things going for me in my life that losing my appearance was not the end-all. Many people are enduring this agony and have for much longer than me. I empathize sincerely with them and I wish I had the solution that could correct this for us all. For now, you're not alone, and I understand.

What makes this "disfigurement" so different and tap into our insecurity so sharply? Because it's our eyes. The eyes are the most beautiful, expressive, first-noticed physical attribute about a person. We cannot hide them as easily as many other physical features. I would gladly trade the T.E.D. for some of the worst physical disfigurements. Throw a huge mole on my back, leave me a sizable scar on my knee...anything but this. Gradually, it became more difficult to let people look me in the eye. I had to consciously tell myself to allow it. I also went from a person who took pictures of myself constantly to one who ducked out from any camera in sight. I had bug eyes and it seemed like they were only getting worse with time. Sometimes strangers would compliment me and say I have the most BIG beautiful blue eyes they have ever seen. All I heard was big eyes. At times I felt like I was scary looking. I looked at myself and thought such negative words, "mutated, ugly, disfigured..etc" It was emotionally painful to look at myself.

Many women know what it's like to go through pain in order to look good. It's almost a norm. That would be my logical reasoning for why the extreme pain was not as "painful" to me as my outward appearance.

First Post

I chose to start this blog with a quick photo summary of the thyroid eye disease I experienced. I thought it be appropriate to start with the climax of the story.

The beginning of my senior year of high school was everything I set it up to be. I had worked hard academically throughout my entire school career. I was enrolled in challenging courses, I had friends and I had a boyfriend. I loved how I looked. I thought very highly of myself and my appearance. I was confident. By Springtime, as if overnight, something changed. I did not notice anything was truly wrong with me at first. I was extremely active with sports and I exercised frequently. I was in very good shape, but always trying to improve. Gradually, my eyes began to take on a 'starry' appearance. By my graduation in June of 2008 my face was already transformed. Everyone told me there was something 'not right' about my eyes. As a typical 18 year old, I rarely removed my contact lenses at night. Actually, I stayed up practically all night until I fell asleep under textbooks. So, proper contact lens removal rarely occurred. I figured the reason for my stare-like eyes were the contacts. So I went the the eye doctor and received my lecture and carried on. Time went on, I was still neglectful. I was very busy with schoolwork, softball and socializing. I found that my eyes were still not right. Soon I graduated and immediately took off to college across the country. I started summer college courses within 3 weeks after graduating high school! With all the changes and excitement, my "eye issue" was still a low-end priority. Then one day I attempted to remove the contacts--and couldn't. I struggled for about 3 days to remove them. Later I found out from a new eye doctor that there were no contact lenses in my eyes and I had been irritating them for nothing. This  endeavor ended up causing tears on my cornea, which I later found out. So I bought new glasses and vowed to not wear contacts for as long as it took for my eyes to get better...............that was 30 months ago and they only got worse.

It's important to know that I had been experiencing other bizarre symptoms at the same time during my senior year. However since I had misattributed the cause of my eye condition to contact lens neglect, along with my eye doctors, I went undiagnosed with the actual cause for a long time. In the midst of my eye doctor visits complaining about my eyes having a starry appearance and potentially due to contact lens neglect, I was also visiting an MD discussing my heart palpitations and panicky feelings that I would get from time to time. Those doctors ran an EKG that was normal and sent me on my way.

I spent the first summer of college becoming full-blow symptomatic. I was hot all the time. Moving from NJ to FL seemed to be the logical reason. My eyes progressively worsened and I had an insatiable appetite.

By November, approximately 9 months after the estimated onset of my symptoms, I was finally diagnosed with hyperthyroidism caused by Graves Disease.

Quick photo journey with T.E.D.

This is me at age 17 before Graves--about 4-5 months prior to onset of Thyroid Eye Disorder

 

This is met at age 20 the night before my endoscopic orbital decompression.

Right after 6 hour surgery. I remained like this  for the night and had the patch removed the next day.

This was right after the packing was removed from my nostrils and the eye patch was taken off. There are stitches running from my eyelids to above the eyebrows. I was not in pain. I felt better than I looked.

Approximately 4 weeks after surgery.