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Top Five.

One of my favorite games is “Top Five.” Top Five Favorite Movies. Top Five Bands of All Time. Top Five Things I’ve Done to Embarrass Myself. I had the arrogance to think I invented this game, but it turns out that John Cusack did a whole film utilizing this introspective device, namely High Fidelity.

Regardless, I already know what would be included in some of your Top Fives. A cure for diabetes would head up the “Top Five Things I Wish For” category. But there is more to us than Diabetes. That may be what brought us to this venue, but I want to know more, if you’re willing to share.

That brings me to … (drum roll not necessary but appreciated) …

Six Until Me presents …
TOP FIVE.

Here’s the deal: I will provide the scintillating categories and you provide your Top Five.

It’s true: The Fun Just May Never Stop.
And for those of you who check in here but are unwilling to join the threads regarding diabetes topics, here is your opportunity to post with ease.
1. Top Five Favorite Bands
2. Top Five Books I’ve Read
3. Top Five Things I’ve Done to Embarrass Myself
4. Top Five Movies, Ever
5. Top Five Idiosyncrasies I Lay Claim To
6. Top Five Things I Want to Accomplish
7. Top Five Items I Refuse to Eat
8. Top Five Categories I’d Like to See

I am looking forward to your responses. Game on.

I Will Not Jinx Myself This Time.

I’m off to The Joslin Diabetes Center tomorrow for my checkup appointment with The Crew. My crew consists of the endocrinologist, the exercise physiologist, the dietician, the sadists in the bloodwork lab, and the teaching nurse. I take the day off from work because it’s a decent ride to Boston from my house and I tend to get a little fussy about these appointments, speaking in terms of stress levels.

On tap for tomorrow: discussing my new exercise regimen and the subsequent lows, the kidney infection I had in February, my tangled bout with TSS, and my sweet little cotton wool spot (who I haven’t affectionately named because I don’t want to get too attached).

Not on tap for tomorrow: fretting, worrying, panicking, and jinxing myself. Last time I had a doctor’s appointment, I posted this long dissertation about What Could Go Wrong and Maybe I Deserve This and I ended up with a bit of dodgy news. This time, I’m going in expecting nothing. And everything.

I’ll be ready either way.

 

For the Parents of Diabetic Children.

If I were a parent, this would be my worst nightmare: “Your child has diabetes.”

The scenarios would roam about unsupervised in my mind. Will she be taunted at school? Will she have a bad low blood sugar reaction in her sleep? Will she hate herself for being sick? Will she go blind? Will she have kidney complications? Will she have a normal childhood? Will she still love herself, despite this chronic illness?

Parents never want anything to happen to their child. You do your best to protect them. And keep them safe from what might hurt them. The very notion of an illness that could destroy them must keep you up all night sometimes, your hearts aching with the acceptance of your child’s mortality.

And while you are worrying about the quality of your child’s life, know this:

They will be okay.

While you worry about how diabetes will affect our lives, we will be living them. We live with this. Through this. We do this every day. This is our disease. But this is also Our Lives. So while we test our blood sugar and take our insulin, we won’t be missing out on a thing. Do not worry. Your child will make you crazy by talking on the phone for hours with kids they just saw at school. You will catch them dancing in their rooms to music you don’t understand. They will drive the car to the store for the first time while you wait at the window, wringing your hands. They will go to school dances with their friends and come home with stories that make no mention of finger pricks or infusion sites. They will cry when they are sad. Or they will light up the room with their smile when they are happy. They will fall in love. They won’t miss a thing. They will persevere.

They will be okay.

So when you look at them as they sleep, wondering what their level might be or if they ate enough of a bedtime snack, know that they sleep peacefully. You do the worrying. You will so carefully integrate diabetes into their lives that they will barely notice the seams. Your love and perseverance will teach them to succeed at both life anddiabetes.

But they won’t notice the separation.

To them, it will just be Life.

Business As Usual.

The support I’ve received from the online community (and from those I know in Real Life who stopped in to post their thoughts) has been so generous, and for that I thank everybody. I never wanted to be in this position, but if I have to be, I’m glad I have you guys.

Strange thing is, for those of you I’ve just met, my development of a sweet little cotton wool spot (I’m hoping if I feign some affection for it, it may tire of me and leave …) might not sound so out of the ordinary. I am, after all, pushing almost two decades at this diabetes bit, and I was “due” for something.

Wasn’t ready for it, though. Not in the least bit. I’ve always been the diabetic that people looked to for hope. “Hey, she’s had it forever but there’s not a thing wrong with her!” I liked being that. People know a heap of information on the complications yet very little on those who live with the disease. I was proud to be the girl they defined as something other than “sick.”

I remember when I went for my first pump consultation class at Joslin, and one of the kids in the room was 27 years old, diabetic for 13 years, and had essentially no sight remaining in his left eye. He scared the absolute shit out of me. I couldn’t help it – I wondered what he had Done. Did he test enough? Was he eating off the regimen? Was he exercising? What did he do? And how can I avoid it??

But I was an ignorant moron because he didn’t Do anything. The disease just took his eyesight. He could have been the most regimented diabetic this side of Halle Berry. Or he could have been snorting pixie sticks (ew) and mainlining maple syrup. Who knows. The point is that diabetes deals a dodgy hand and we, as the diabetics, have to do our best. I’ve done my best. I am pretty sure I can defeat the Evil Cotton Wool Spot and come out clean on the other side of September. But if they dilate me on September 23 and find that it is still there or worse, I will have to do my best to keep from blaming myself. I know this isn’t my fault.

That doesn’t mean I won’t try and fix it, though.

So the game plan is this: I will become The Most Diabetic Kerri (I may wear a cape) for the next four months. No deviating from a streamlined meal plan. Sticking to the exercise plan of five – six times a week of cardio. Testing as often as I have been, but being better about recording results. I need to be Game On. I don’t want to have vision problems at 26. For me, it doesn’t have to be that way. But the rest of my life will be Business as Usual. I won’t stop going to work. Or playing with my nephew. Or taunting my family members. I won’t stop laughing. Or falling for the boy. Or writing. Or playing really shoddy games of tennis.

Or Living.

I will try my best. And if it doesn’t work, I can’t lose hope. We can survive as diabetics. There is the possibility of a cure at any moment. I want to be as ready as possible.

There is always hope. Always always always. Remember that. And remind me if I happen to forget.

What They Found.

What they found: a “cotton wool spot along the vascular arcade superior temporal in the right eye.”

What that is:
 a swelling of the surface layer of the retina, when a part of the eye isn’t provided with enough oxygen due to a damaged blood vessel.

What They said: “Don’t get worked up about it. It could have been there last year when your eyes were dilated and it was too small to see. Or it could have come up in the past few months. Either way, it may repair itself on its own. Don’t worry too much. Just keep your blood sugars in control. And do not go online and check it out – that will just make you worry too much. Keep your sugars down as much as possible. And cardiovascular exercise at least three times a week. We’ll re-dilate in September.”

What I did: Felt really surprised. Replaced by a hollow fear. I’ve never had anyone even allude to a diabetic complication before. My eyes had been fine, my feet are fine, my blood work and urine microalbumin are always fine. I don’t have gastroparesis. Or nerve damage. Or anything.

So when the doctor said that there was a slight problem with my right eye, it filled with tears. The left one did, too. I blotted my eyes with a tissue, blaming the leaking on the bright light the doctor had just shined in my eyes. She told me to sit in the waiting room for a few minutes while my eyes readjusted to the office lighting and, in the meantime, she would develop the pictures of my retina and the cotton wool spot.

I didn’t tell my mom until today. I didn’t want her to worry. I told my friend that night, and I told The Boy after the appointment was over. I don’t want people to worry. “I’m fine… don’t worry, I’m fine.” I assert, just as much for my benefit as for theirs. I don’t want to worry, either.

I’m not sure what else to write about it because I’m still not sure what to think. I don’t think I’ll be blind in the morning. But I don’t know what to think. I want to go to the gym. I want to keep my blood sugars in tight control and my mind in a state as close to Relaxed as possible. There are so many things I feel I haven’t done yet. I want a career. I want a good relationship filled with laughter. I want a beautiful child. I want to be a healthy twenty-six year old girl with a limitless future.

He made me feel better, though. In the middle of the night, as my troubled mind whirled a mix of thoughts, I told him I was scared. And he said it would be okay. I asked how he knew.

He responded with a tightened arm around my shoulders. “I don’t know.”

And the honesty of that statement made my feelings of anxiety and fear subside. I have no idea how it will be okay. I have no idea what may lie ahead … if the next dilation will reveal more of these spots, or if a few months of very careful control will keep its progression at bay. If this is the beginning of a long road of complications or the proverbial wake up call. I have no idea. How it will be okay, I am not sure.

But it will be.

(…and of course I went online and scared myself silly by looking up “cotton wool spot” and cross referencing “diabetes.” Listen to doctors when they say “Don’t look it up online.” They are absolutely right. And I am absolutely retarded for doing it. I had to immediately Google “Volkswagen” and “diabetes” in effort to calm down a little bit. I came across a website that made me laugh. Click on this messof a site, scroll down to the chaos titled “ROLLS-ROYCES AND VOLKSWAGENS” and keep in mind that I drive a little 1996 VW…)

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