An Extraordinary girl in an Ordinary World

A close up of a lady with long brown hair and glasses, her hand on her face.

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I guess you could always say I was unique from the time I was born.  My mom had complications from the start of her labor with me, her water broke but instead of coming out it went inside and essentially I was drowning in the womb!  I survived, of course, however it was just the start of the life I would about to live. 

The day before my 3rd birthday was the start of many surgeries in my childhood (I had over 30 but lost count of the official number) due to the result of my Eustachian tubes not being fully developed.  The doctors just assumed because water remained in my ears for so long undetected, that was the reason I suffered from nerve damage which lead to moderate/severe hearing loss in both ears. 

When I was younger, I can recall always being able to see at night, running around the racetrack as my dad was an avid dirt car driver at a local track.  Then one year, it almost seemed to disappear.  My mom would try to bring it up to my eye doctor and he would just say I was clumsy!  I guess randomly running into walls or people would appear that way, but in my defense I honestly didn’t see them.  As time went on, I just took what I saw as something everyone else did and always wondered why I couldn’t see very well when everyone else seemed to just fine.  About 2 years ago is when I really noticed a change, but never in my wildest dreams would I have guessed I was going blind!

In April of 2014, I decided to get my eyes checked up at Sears Optical since they had a sale on eyeglasses and seemed to be more affordable than any other location in the city. What started out as a typical eye exam ended up being something so much more.  I was referred to a retina specialist at RVC (Retina Vitreous Consultants) here in town.  Only 4 days later, I found out I had myopic degeneration and he (Dr. Bergeron) wanted me to see another retina specialist (Dr. Rath) within the next 2 weeks.  After I saw Dr. Rath, she examined me and then said quote, “There’s something really serious going on and we need to find out what exactly so we’re sending you to Pittsburgh for extensive tests.”  I remember sitting there in a surreal feeling as if I were listening to this from outside my body.  It definitely hit me upside the head and not in a good way! Needless to say I cried a lot over the next few months until the testing in July.

After my tests were done in Pittsburgh, it confirmed that I had RP or Retinitis Pigmentosa (Rod/Cone Dystrophy) and that I would be legally blind within a year or two.  Dr. Rath was very surprised I could see as well as I can since the damage is extensive she said. I didn’t get a set degree of vision, but I see out of a square like shaped box of sorts. 

After my RP diagnosis, I did some research of my own into what causes the disease and so on.  I came across an article that described Ushers, and to my astonishment, Ushers Type 2 was a dead ringer for everything I had.  I was born with moderate/severe hearing loss and more recently, the RP.  After my latest hearing test, Dr. Rath as well as my audiologist confirmed that I had Usher’s Syndrome Type 2.  In March of 2015, I hope to get genetic testing to confirm everything in black and white.  I think it’s crazy to know that just 400,000 people, or 0.006% of the population, has one of the three types of Ushers!

As if the Usher’s isn’t enough to deal with, I’ve also dealt with a lot of health conditions and just within the last 5 years, I’ve been diagnosed with diabetes, high blood pressure, edema, gout, rapid heart rate, and a heart murmur!

Rest assure that this will NOT slow me down.  I’ve worked since I was 17 (a junior in high school) and went to college 3 different times and have 2 associate’s degrees, one in management/computer applications and one in accounting.  I had to delay pursuing my Bachelor’s in Accounting due to financial issues.  It bothers me to know I’m just 2 courses shy of graduating but $1800 short of paying the tuition!   But nevertheless, I’ve never backed down from a challenge.  People would tell me when I was younger that I couldn’t do something and I would work hard to prove them wrong! 

I’m used to the whole hearing loss issue, however I’m not used to losing my eyesight and I don’t think I ever will.  I’m reminded over and over again that I’ll never see like I used to.  Every time I go to read an article or watch a movie, I see “snow” and white rings floating around.  As frustrating as it may be, I know that I’ll continue to fight until the end.  Because let’s face it, I was born fighting my way into the world and I’ll definitely go out fighting as well!

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