Dear Dblogville: I Will Be Seeing Things In a Different, But No less Beautiful Light
5th UPDATE: THIS HAD ABSOLUTELY NOTHING TO DO WITH DIABETES -and I have the test results to prove it! Nothing to do with heart or brain issues. It was a 1 in a million thing- just like me~
4th UPDATE 12/11/09: Yesterdays Brain MRI and MRA are perfectly normal. Well...as normal as a brain owned and operated by yours truly can be~
3RD UPDATE 12/7/09: HeartEKG/ Echo cardiogram/Corroded Artery tests all came back negative. Apparently, I have no blockages, incredibly little plack, a fine looking heart muscle. and a "great set of corroded arteries!"
12/3/09 2ND UPDATE: Both my Endocrinoligist & The two eye specialists (who both said I had the most beautiful looking retinas they'd ever seen on a PWD with diabetes for 32 yrs) agree that my vision loss WAS NOT caused by Diabetes.
This is an updated version of last nights letter that I sent in reply to the emails in my inbox. It has some new updates, and less grammatical errors & typos. Though I did have some really good excuses for the latter, including getting my eyes dilated twice in one day, having my veins shot up with all sorts of dye- and the whole lack of vision thing.
Thank you all for being such wonderful caring friends!
Without your love and positivity life would be much more difficult.
I love and appreciate every single one of you VERY much!
Tuesday was a very long day that involved multiple Doctors,tests, and a shitload of tears.
I tried keeping up on Twitter and email- but I was in a very poor calling area and couldn't access any online activity.
Plus mentally, I was dealing with some stuff.
You all know what happened on Monday, so I wont rehash.
Visually, my eye looks perfect. No pain, no redness, no goo, no outward swelling.
The good news, I have VERY LITTLE diabetic retnopothy- especially for someone whose had diabetes for 32 years.
But, a 1 in a million occurrence happened. I developed a blood clot in my eye called a retinal artery occlusion. Basically my right eye had a stroke and oxygen supply was lost to the vascular system of the eye. If it's not caught within 90 minutes of occurring,you loose your vision.
The kicker is- you don't have any symptoms. They don't know when this happened, it might have happened while I was sleeping since I woke up feeling like something was in my eye.
I've lost most of my vision in my right eye, permanently. The clot could have gone to my brain, but did not.
Yes, it was a lot to take in, and there were many moments where I couldn't speak because the fear and grief that caused a huge lump in my throat.
Thank God my friend Cathy V, and my sister Cathy M(two separate Cathy's who I love VERY much) were there to take notes and answer questions when I was to upset to.
On a positive note, I was born with an extra blood vessel in that eye- which only 15 to 20% of the population is born with.
That small, wonderful little vessel who I've decided to call "Mr Wonderful", provided my eye with some oxygen. And that wonderful blood vessel will allow me to see a bit from my right eye, once the swelling& pressure around the retinal area goes down.
The Docs are not sure if this is diabetes related or not- especially since I had very little diabetic retnopathy for someone w/D for 32 yrs.
They actually feel it could be due to heart and stroke issues that run in my family.
And they also thing it might have been some freak factor - one in a million shot.
The medical staff at both specialists office were very upset, brutally honest, and incredibly supportive.
The DON'T believe it will happen in my left eye - which is strong, and is already starting to compensate for the right.
I will be getting an ecco cardiogram & a corroded artery test to rule out any blockages.
The way I see things now will be different but no less beautiful.
I will still see the wonders that the world has to offer and experience the love of friends like all of you.
And for that, I am truly blessed.
This morning I woke up and had some sad moments.
I cried when I opened my eyes.
I guess I just need to get used to waking up too the world in a different way.
Not only did I cry, but I sobbed until I couldn't catch my breath.
Then I got up, scheduled my ecco cardiogram & corroded artery test for Friday afternoon.
To be honest, I continued to cry as I scheduled the tests.
On the bright side- my tears made the receptionists on the other end of the phone schedule me ASAP.
i've decided that I will cry when needed,but just as important, l will also continue to laugh and live.
This is a moment in my life that is a life changing one- but not necessary for the worse.
On the contrary, I will fight very hard to see (no pun intended) the gifts that this moment has given,and will continue to give me.
Like I said, the clot could have gone to my brain, the fact that it did not is indeed a gift.
The fact that my experience might get others to go to both the heart and eye Dr, is indeed a gift.
There is the gift of continuing on with life.
I will continue to live, be a Diabetes Advocate (perhaps a diabetes / Retina Artery Occlusion Advocate now) work, blog, and find the funny a regarding this most recent bump on the road of life.
And I absolutely expect all of you to do the same.
Just please don't send any braille get well cards, because I have too much on my plate and I don't have time to learn a new language just yet!
But feel free to done some new fashions inspired by yours truly by clicking HERE!
What People Are Saying About Kelly Kunik's Diabetesalicious Humor
"I laughed so hard I puked all over my pump -Just kidding......
Kelly's intimate knowledge of living with diabetes makes her the perfect person to poke fun at all of our little eccentricities. If laughter really is the best medicine, then Kelly should be nominated for Sturgeon General." Gary Scheiner - Certified Diabetes Educator, Owner & Operator of Integrated Diabetes Services, Author of "You Can Control Diabetes" and "How to Think Like A Pancreas." Marx Brothers Fan for life, T1 for 20 years .
"Kelly Kunik performed her Diabetes Comedy Act at the Diabetes, Exercise, & Sports Association (DESA) National meeting in Colorado Springs in June of 2007. She had the room laughing all night! It was great to see the light side of Diabetes for once...."
Rick Philbin, Type 1, Board of Directors, DESA
"Kelly was very engaging with her humor and positive attitude in looking at life with Diabetes on a lighter side. Everyone in my Diabetes Support group lowered their glucose levels with laughter that evening!"
Bryony Crane, RD CDE
Virtua Diabetes and Nutrition Svs
"Dr. Kelly keeps you laughing.......Great bedside manner!"
Boston Charlie - T1 30 years
"As a Diabetes Educator, I'm always looking for new ways to help patients. Kelly Kunik offers a unique way of educating patients through laughter. There's a tremendous validation in Kelly's approach - Everybody thinks that no one once else has diabetes related issues, day & day out. Whether it getting your tubing caught on a door nob; acting out with a low blood sugar, or dealing with the same old questions. Silly or serious, Kelly's observations allow patients to feel better about themselves. When people feel good about themselves, they practice better self management. IT'S ALL GOOD. We all had so much fun the night Kelly spoke to my Type 1 support group."
Cheryl Marco, RD, CDE Thomas Jefferson University Division of Endocrinology and Metabolic Diseases