Wednesday, December 2, 2009

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. 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.

Dearest Dtribe:

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!



Cara said...

Oh Kelly. I'm so sorry. And I will be praying for you and thinking about you. I was offline almost all day yesterday, so I had no idea what was going on.
You are such a strong person. I won't say brave, because I know we all deal w/ the cards we are dealt. But you are strong, and beautiful and such a blessing to so many people.

Casey said...

You are so strong. An inspiration. You have my shoulders and all the hankerchefs I can provide. I only recently "met" you online, the sense of community I feel with the DOC causes so much emotion. continuing to pray for you. Much love and hugs!

Melinda said...

I've been thinking about you non-stop. You are simply amazing. XOX


Kelly Rawlings said...

Trust you to think about other people's health (and gently remind us to schedule those put-off exams) in the midst of your own eye thunderbolt.

There is definitely a reason and a higher purpose for the fact the clot didn't make it to your brain.

In another 32 years with diabetes (which I feel strongly you will have), we can pool our remaining functional body parts & may have just enough left to make one whole person. Because of you, a person w/ a really HUGE heart.

Araby62 (a.k.a. Kathy) said...


wv: fuslangs

I am gonna hang diabetes up by the fuslangs for messing with Kelly!!

Crystal said...

Amazing. You. Amazing.
You are such an inspiration. I love you so very much Kelly.

Hang tough. We are all here for you, the tears, the laughter....all of it.


Lyrehca said...

Hi--saw other's posts on FB and Twitter about you and came over and read your news. I'm terribly sorry for your loss, though it is somehow good to hear that you have little sign of retinopathy, at least.

All best to you moving forward.

Lora said...

I'm here for whatever you need. And I am already in love with Mr. Wonderful. He has an excellent and fabulous host. Thinking of you and sending positive vibes and virtual Kleenex from my sleeve whenever you need it. Love.

Dayle said...

I love you. And Mr. Wonderful. Just so you know.


Scott S said...

This seems like a really raw deal, but on the bright(er) side, its not retinopathy (thanks to all of your hard work) and you still have vision. Still, I trust you will come through with the same tenacity that has gotten you through everything else ... with laughter!

Katie from SF said...

Oh, Kelly. I've been reading your blog for a while now (found you on Act-1's site...). I always find your wit and humor a positive influence in a world that can be so difficult. I was so sad to hear about what happened to you... but please know that we are all sending you lots of love and are here for you. Things may be different for a while, but know that you are still the same (fabulous!) person.

Val said...

In a just world your one-in-a-million shot should have been winning the lottery.


thinking of you!

Sandra Miller said...

Kelly, I read about what happened last night on Twitter and haven't stopped thinking about you, about what you must be going through.

You are absolutely amazing.

Sending many positive thoughts to you and to the magnificent Mr. Wonderful.

Huge (((hugs)))

Molly said...

So sorry to hear your news. I am inspired by your quest to see the positives in this time of difficulty.
You are a hero.

Rachel said...

Constantly thinking of you as you make your way on this latest journey. I know you are strong and will get through this fine. :)

Nan said...

o Kelly...i am sorry this has happened...but so thankful it was not worse. you are a strong lady and an inspiration. love to you...

Jaimie said...

I know you will continue to fight like hell through those tears of's the kind of strong and persistant woman you are...remembering to allow yourself that down time & embrace all the positivity that surrounds you so much xoxo

Carol said...

Kelly, I'm so sorry you are facing this loss. You are incredibly brave to blog about it while it is still so fresh, but I'm so glad you did. So glad to hear that Mr. Wonderful may have preserved some vision in that eye, and paying it shakes out that he lives up to his name in a big way. Thank you for sharing through the tears. You are an awesome, courageous, strong, beautiful Diazon!

p.s. word verification was perserbw, so trusting you will persevere, beautiful woman!

Minnesota Nice said...

Kelly - I feel so deeply saddened about this. And I find no words to express how I'd like to comfort you. Keep writing about it - we will be here for you.

Lea said...

Kelly, I wish I could reach trough the computer and hug you. Whatever this brings you, I have a feeling you'll make the best out of it.
You hang in there, tough cookie.

George said...

I wish I could hug you. I went to sleep last night praying boldly for a miracle. Even just a little more vision in that eye.

I have to hope.

I love you heaps and thank God every time I think of your friendship.

Bernard said...

K2, I'm just reading about this terrible event, how scary. I'll say some prayers for you.

Kassie said...

I'm trying to think of something reassuring and eloquent but all I have is, "well, shit - this sucks!" and it does, and I hope you are ok and will continue to be ok. Sending a big virtual hug your way!

cathy van duyne said...

Hey Kelly ..wanted to comment and thank all your blogger friends for their support and kind word for you. what a great group of friends. Love the eye patch but the tiara makes the outfit! perfect! love ya, admire your strength, not surprized by your resilliance. Sorry about the setback, it sucks, but you will adjust quickly and help may people by telling your story.

meanderings said...

Adding my hugs and prayers to all the others.
Stay strong and know that we're all wishing you the best.

Meri said...

Kelly...I'm speechless. All I can think to do is cry with you right now. You always inspire me. With every post you show me what an amazing person a child with diabetes can grow up to be...and it is so beautiful! If anyone can get through this with grace and humor it is you! You are so loved! Prayers and good thoughts coming your way!

Harry said...

I'm sorry to hear about your trouble, but I know you're strong enough to get through it. We're all here for you, and you'll be in my thoughts and prayers. Stay strong!

Lee Ann Thill said...

Lots of virtual (((hugs))) for now to hold you over until I can give you an in-person hug... which hopefully will be in the not-too-distant future.

Just let me know when you're up to grabbing lunch :)

Annie said...

Kelly, I am so sorry to hear this news. You always make me laugh. I hope your humor and postive thinking will help you through. My prayers are with you.

Kerri. said...

We all love you dearly, Kelly, and we're here for you. Chris and I send our best (cats do, too, and so does BSparl) and you're in our thoughts.

You are our hero. Stay strong, girl.

karend1 said...

I hate reading stuff like this, but am truly amazed by your strength and spirit. I am not sure I could hold on as well as you do. You are amazing.

Type 1 for 43 years, and feel like I am starting to fade.

Windy said...

Kelly!!! SUCK!!!! You will be in my thoughts and prayers. You are such a strong woman and I admire the honest way you are handling this. Hugs to you.

ninnifur said...

YOU ARE AMAZING!! Seriously, you kept talking about how you were crying and the whole time I was crying! I cannot tell you what an inspiration you are to me. <3

also, I had my eyes check a few weeks ago, just to let you know :)

Shamae (Ghost written by Loren her hubby) said...

I can't say anything new than whats already been said. Thank you for being you. Thank you for helping those of us who are trying to help our kids deal with this disease but have no idea what they are going through, gain a great understanding. You have helped us so much. Sydney is just barely 6...but i hope when she is 32 years into her diagnosis (She will be 36 years old then) that she is as strong and confident as you are. Thanks again for being who you are.

Unknown said...

My prayers are with you as you go through this unexpected and difficult time. THIS is life with diabetes. YOU are a strong person. It'll just give you more to write about! Keep your sense of humor and rely on your friends and family.

Traci said...

You are one of the strongest people I know and I love your attitude towards the things that life sends your way. You make me much stronger and tougher and I thank you for it. Please keep us posted on what happens and what your results are, but in the meantime our thoughts will be with you and our hope for the best. You're awesome!

Anonymous said...

Kelly - I just want to virtually give you a hug.

Reading your posts has been a rock for me for a long time.

I don't know how you do it, but your sunshine-y attitude spreads.

Wishing you all the best, and my sincerest, fondest, love -


Layne said...

Wow, Kelly. I'm so sorry you are going through this. We will all be praying for you! I'm glad to hear that you have loads of support surrounding you and please know that the DOC is behind you all the way.

nonsenselady said...

It's so ironic that we T1 folks spend a lot of our lives working against complications and trying so hard to stay healthy, and then, well, we're vulnerable to a lot of other health and life pitfalls as well. But it sounds as if you're handling it with the utmost grace, and I want not only to wish you strength but to say thanks for showing the rest of us how it's done when it comes to dealing with the shit of life. I'll be thinking of you.

kelly close said...

kelly kelly kelly : > hang in there! you are doing fabulously and are such an inspiration.