Sunday, May 15, 2005

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 mess of a site, scroll down to the chaos titled "ROLLS-ROYCES AND VOLKSWAGENS" and keep in mind that I drive a little 1996 VW...)

14 Comments:

At May 16, 2005 7:06 AM, Blogger Violet said...

Hello, K. Been wondering about you. Thought the quietude might not be such a good thing. Damn it. I'm sorry.

Here are my thoughts:

1. You don't deserve this. Hope you can give yourself that message frequently and in gentle tones.

2. The Boy makes a very good point. I like him. I think I've mentioned this before? Like him even more now.

3. I am not in favor of doctors doling out limited bits of information to adult patients and telling us not to seek more. Who among us, committed as we are to self care, can stand to follow that kind of instruction? Sheesh. It's patronizing and leads to situations like the one you're in now, where you end up terrified, by yourself, without support or clarification. Why didn't they give you full disclosure and explain what treatments can be done IF this thing progresses to the point of requiring treatment? Cause there are indeed treatments, as I'm sure you learned on your own. This is not some kind of inevitability, not a barrier to the things you want in your life, far far far from it.

5. I commend you for going there, for taking care of yourself, for facing your fears and soldiering on. You have what you need to contend with this within you and around you. How do I know? I know because it's in your writing. Your kind of words don't lie. You will find a way to thrive.

Take care,
Violet

 
At May 16, 2005 11:32 AM, Blogger Sandra Miller said...

Hey there Kerri,

I'm so sorry. I hate this $@&#@ disease! You shouldn't have to worry about things like this.

That said, you WILL be all right.

I agree 100% with Violet's wise words above. You should certainly have been given more information, not encouraged to seek none.

BTW, if it helps, my husband's boss has been type 1 for over 30 yrs. His only complication occurred several years back, which required a laser treatment in one eye. He's not had a problem since. He is also very healthy, married with three children.

Please take care,
Sandra

 
At May 16, 2005 12:13 PM, Anonymous Pearlsa said...

Hi Kerri,

I am so sorry to hear about your eye my heart goes out to you. Your words always touch me and look at you as one of my role models in dealing with this disease. You are a very strong person.

Violet’s wise words ring so true.

Take care,

 
At May 16, 2005 3:31 PM, Anonymous Darrell said...

When we were litttle in stature and the snow would cover our backyard like a puffy comforter. We would go out into the backyard to build snowforts, to go sledding, and to eat a majority of it.

We also had this thing where we would try to go as long as possible without damaging the "virgin" snow, keeping to our trails and cordoned off zones, in an attempt to stave off ruin. We were a prepubescent SnowPeace, minus the trademark galleon.

It would only last for so long, before the snow would melt, no matter how hard we tried to preserve it with the no-walk no-eat zones, but we knew there'd be more snow to cover up the previous damage we had done.

You've done so well, for so very long. The way you think and operate, I see a snowscape for you for a very long time. Just don't forget to eat some snow once in awhile.

 
At May 16, 2005 11:55 PM, Blogger Kerri. said...

To Pearlsa, Violet, and Sandra,

Thank you for your encouragement. I am forever grateful for your kind words and support. I am glad I started this blog before finding this out - the network of diabetics and friends/families of diabetics are what I need most right now, aside from a new right eyeball blood vessel ... :)

In all seriousness, thank you guys for checking in.

And as for you, Darrell, I'm sure they can guess you're my brother (and a fine writer at that). Thank you for your post. The memory of us trudging through the snow along the same forged path to avoid marring the snowscape makes me laugh. (But the snow was tasty.) Beautiful metaphor. And true. Completely true.

So I'm off to take care of this problem. It will be a few months of fastidious care: blood sugar monitoring, basal tweaking, gym workouts, and constant attention to my overall health. But it will be okay. I'm sure it will snow again. A delicious blizzard this time.

 
At May 17, 2005 6:59 AM, Blogger Violet said...

Hi Kerri...I'm cheering for you from Pumplandia. Please keep telling us how it's going.

 
At May 17, 2005 10:35 AM, Blogger Tekakwitha said...

Kerri -

Just wanted you to know that I'm thinking of you! Hang in there.

Tekakwitha

 
At May 17, 2005 3:34 PM, Anonymous Anonymous said...

As you know my literary and spelling skills are far below yours, cause Sh*@ girl...so this is not going to be as witty and beautiful as your posts but in all seriousness. From the moment I read the first "blog" I have learned more about diabetes and you as person it is unreal. I have cried and laughed. I have sent the site every diabetic I know. But the hardest thing to realize when reading all of this is it's about you because I don't think of you as being "sick" You are Kerri and that's it! No matter what the complication you are the strongest women I know!

 
At May 17, 2005 8:15 PM, Anonymous AmyT said...

Kerri,
Man, I admire you! And my thoughts are with you.

Here I see you facing one of my worst fears with great courage and resourcefulness...

Whatever happens, please don't stop blogging. I want us to go through this with you! Please let us help (if we can), and learn from your great strength.

- AmyT

 
At May 18, 2005 6:11 PM, Blogger Shannon said...

Kerry,

Screw the doctors. Who the heck can be told there's something wrong with them and not have the impulse to investigate it? As a matter of fact, I'm going to investigate the cotton eye thing myself on the internet.

Also, I absolutely loved what Darrell wrote. I'm going to copy it and save it for my son to read when he's old enough, for those days when he's feeling discouraraged about managing his diabetes when he's old enough to do so.

 
At May 19, 2005 10:50 AM, Blogger Shannon said...

From what I've read, cotton wool spot does not affect vision, but the underlying problem should be fixed. There are treatments for fixing the vessels that have a problem. I would look more into it to see what your treatment options are. In the meantime, just keep doing what you're doing by controlling you sugars the way you've been doing lately.

 
At May 20, 2005 4:42 PM, Anonymous terry said...

Rerad your story in Amy's blog. I can't imagine any Dr. advising a patient to remain clueless about any condition. Contact with others who may have had work done (I personally had two sessions of laser retinopathy) may help you understand your condition more and alieve any fears you may have.

 
At June 23, 2013 3:08 PM, Anonymous Huda. said...

I first read this post nearly three years ago. I'm here now because today I found myself in this same position, except it's a microaneurysm in my right eye. Never had complications yet. Haven't told my parents or best friend, just my soon-to-be husband.

I feel every word you've written above. I want a family soon too, and a life with them. I have no idea what will await me when my wonderful ophthalmologist re-dilates in 3 months (September). I do believe, however, that this is my wakeup call.

 
At November 14, 2013 8:08 AM, Anonymous Anonymous said...

I just went to the doctor yesterday and they found one cotton wool spot on my right eye and your blog popped up when I went googling. I've been diabetic for 15 years, and frequently read your stories when I was pregnant and needed some encouragement. Keep on writing. Your stories give me encouragement.

 

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