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Eye Yi Yi.

"Just tell me what line you can read.  Smallest one that's clear, okay?"

"Got it."  I looked across the room to the eye chart.  "SNDRZ.  That's the smallest one that's clear."  

"Awesome.  20/16 vision.  Better than 20/20, my friend!"  The eye technician made a note in my chart, and then came over to apply the eye dilation drops to the inside of my lower lid.

"So now I go sit in the depressing waiting room and wait until I'm dilated?" I asked her, standing up from the examination chair.

"The depressing room?"

"Yeah, the one where there are mostly older people and almost everyone is using a cane and being escorted by a family member or something.  Not exactly uplifting."  I don't know why I had a chip on my shoulder.

"I never thought about that.  But yes, that room.  There's a big TV, though.  That's uplifting, right?"

I smiled at her.  "I'll take it."  

I wandered out into the eye dilation waiting room to let a few minutes pass as my pupils freaked out.  I tried to look at my phone but my vision was starting to sparkle-motion on me and I couldn't see a thing.  So I watched the history of Boston (and how Back Bay was literally the back bay of Boston) and waited.

Eventually, I was called into the office, and my ophthalmologist shined the bright light in my eyes while she asked me a few questions.

"So you had the baby!  How old is she now?"

"She's six and a half months.  I love her.  She's awesome."

"Good, good.  So have you had any issues with your vision?  Any changes that you've noticed?"

"Sort of.  I have this bit of cloudiness in my right eye.  Over on the far right side.  I'm not sure if it's exhaustion or eye strain from too much computer work, but it's the biggest change I've noticed."  

"Okay."  She took to my right eye and looked around for a while.  

"Anything?"  I asked.  I just wanted to know.

"No, nothing in that area.  You might just have some dry eye moments or eye strain, like you said."  

I let out this breath I didn't realize I was holding.  

"But there is some retinopathy.  And some macular edema.  Just a little bit - more in the right eye than in the left - so we're going to keep very close watch on this.  It could get better, it could get worse.  There's unfortunately no telling."

"So it's worse than before the pregnancy?"

"Yes.  You've gone from mild non-proliferative to moderate.  And that's okay.  We can handle that."

She kept talking, and I was listening to every word she was saying.  I heard the words "blood pressure" and "laser surgery in the future, but not now."  I heard her tell me that laser surgery wasn't necessary at this point, and that we wanted to schedule a four month follow up.  I heard her tell me that my eyes were still in good shape, considering 24 years with type 1 and my recent pregnancy.  And I heard her say that this wasn't something to completely panic about - just something to watch closely.

I heard all this.  I heard her reassuring me.  And I felt this weird combination of relief and sadness.  Because I'm in it, now.  Eye complications.  I won't be holding my breath during eye exams any more, because I'm not waiting for the change, for that first moment of "Oh, you have retinopathy."  I know it's there.  I have hope that it will repair itself, and that better diabetes control can contribute to faster healing.

We talked for a bit, and I fumbled with my phone to show her pictures of the baby.  I visited the retina photographer and had a few photos of my eyes taken, and then I ventured out to the parking garage to retrieve my car. 

I thought I might cry, but I didn't.  I thought about calling Chris or my mom to tell them the news, but I didn't do that either.  I sat in the car for a few minutes, listening to the sounds of Boston churning around me.  It felt good to just enjoy the silence.  It was going to be fine.  Things were progressing in my eyes and that was to be expected, after two decades with type 1 and the effects of a pregnancy.  It's not time to panic yet.  It's just time to be aware.

I can handle this. 

Comments

I'm sorry to hear about the progression from mild to moderate, Kerry. Thanks for blogging about this experience - you can handle it. You've handled so much so well so far!

xxxx
Ginger

I don't know why...well I guess I do...but I am kind of "welling-up" over here in Vermont after reading this Kerri.

I think it is the "matter of fact" way you put it. Which is how it is. I get it. But, it sucks...to realize a reality that you were hoping to avoid.

You will handle it, as you do everything, with grace.

Kerri -
Knowledge & awareness are powerful things, and with them you can handle anything!
HUGS
kelly k

You weren't alone at your appointment, Kerri. We were all there with you. And we're here now too :)

Dude. I am sorry to hear this - but you're right, you CAN handle this.

Hugs!

Way to be strong, Kerri. I think I would have cried. But I cry at everything!

I had that moment earlier this year when they first found spots in my eyes. It's scary. But not as bad as it could be. It's a weird feeling. Conflicting.

Big hugs Kerri.

You CAN handle this. This is not a result of anything except having a broken pancreas, which is not your fault. This is nobody's fault.

Kerri, I love your post. I too have had my first appointment at the Opthomoligist this year with the "beginning" of something. with me it is microaneurysims. Up until now I have felt like I was going to "beat" this. It's scary. Stay hopeful. Stay positive. Keep writing!

Keri- Me too, I found out after and during my pregnancy about my macular edena and mild retinopathy. I felt really sad, but honestly things have not gotten worse. I just get it check out and occassionally my edema will bother me. With my second baby who bty is also 6 month, I didn't have any eye complications. It's just your bodys way of freaking out because you had these extra hormones. My endo also told me if you go from really loose control to tight in a very short period a lot of diabetics see this happening.

"Major Suckage"~Scott K Johnson

but you are in good hands...one step/moment/breath at a time...

((hugs))

That must have been so hard to hear, but good for you for being so strong.

All will be well. Knowing is so much better than not knowing.

The good thing is that this is probably the most treatable complication there is - expensive, yes - but treatable - with very little physical reminder that it is there.

Still, even though I may never find myself with eye complications directly related to diabetes, I still have high risk of other eye disease related to the degree to which I am nearsighted and astigmatized (which is not a real word but couldn't get that sentence to work otherwise). I always wait for the other shoe to drop as I get older and complications from this are more likely.

In other words, own your 20/16 lucky butt and be grateful for all the progress made in NON-proliferative retinopathy treatment.

A very moving and (in an odd sort of way) uplifting post. Thank you for sharing it.

M

Oh, Kerri. I know what you mean about holding your breath. Something changes with this news (I got the same news a few months ago). And we keep going. Thanks for a wonderful, insightful post!

My heart goes out to you. DH is there, has been for a while. They are still talking the same things-moderate, laser in the future. The nice thing, the laser keeps getting pushed out. I hope the same thing for you. Keep up the good work, and you'll know you've done the best you can for you and for your family.

I've been through this; several years ago I had laser treatment on my left eye. The doctors never used the term "retinopathy" or even "edema", but did call it "neovascularization" which is new blood vessel growth. Those new blood vessels are much more prone to rupture, particularly in someone who has had type 1 for 34 years, regardless of how well-controlled it may be, so they wanted to get rid of the new vessels with laser treatment.

You can certainly handle it, but it is depressing, perhaps moreso than all the geriatrics with canes and walkers in the waiting room because you're not old yet! I was supposed to be happy that this was an option, and that it was a relatively minor outpatient procedure, but it made me feel as if all this B.S. about good d-management didn't amount to a hill of beans because I was there anyway. It p!$$ed me off -- you might want to cry, but I think its a similar feeling of some kind of defeat. It's not; it comes with the territory, but you deal with it and move on, because there's no other choice, really.

Of COURSE you can! I'm sorry you didn't get better news....big hugs!

Kerri, you are such a beautiful writer. When I read the words, it is completely my own life and feelings. I cannot think of someone who puts it more in to our perspective.

You rock.

Dear Kerri, my eyes welled up as I read your post, my appointment with my eye doctor is next month, and like you I will be holding my breath to find out the results. I don't know what's in the store for me this year, I don't hope for the reversal of the damage but I will be praying as I sit in that depressing room that it hasn't gotten worse from last year. But like you said no matter what it is I will get through it. I love your posts.... It realize that I am not the only one going thru this

1) You hit the nail on the head with the "depressing waiting room" bit. I usually sit there and try to imagine myself sitting in this waiting room when I'm elderly. I do about 50/50 on it being a good thought experiment.

2) Having just had my second round of laser treatments, you can certainly handle it. It's no picnic, but it's the best option available.

3) After both times I found out I needed to have laser treatment, I cried (read: wept or sobbed). There's something crazy threatening and visceral about the risk of vision loss that takes me to a sad, sad place. Sucks.

Keep punchin'.

Dear Kerri, my eyes welled up as I read your post, my appointment with my eye doctor is next month, and like you I will be holding my breath to find out the results. I don't know what's in the store for me this year, I don't hope for the reversal of the damage but I will be praying as I sit in that depressing room that it hasn't gotten worse from last year. But like you said no matter what it is I will get through it. I love your posts.... It realize that I am not the only one going thru this

Someone said we're all in this together, and your posts always make me feel that way. From the depressing waiting room (it's not a real doctor's visit unless everyone around me is over the age of 70) to the Moment of Truth when the doctor looks into your eyes.

I always wonder if my eye doc knows how much suspense is involved in these visits. Some seem to get it and start out with the news immediately. And then there was that one eye doc who always started with "your eyes look kinda funny," which would drive me crazy.

I hate "considering you've had diabetes for X number of years."

It can get better and I have hope that it will. I realized that the more we know the more we can do to kick some ass.

You've got this Kerri. And I mean you can see through walls with your super vision! Better than 20/20? YOU'RE DAMN RIGHT YOU ARE!!!

The serenity prayer works for me. I don't worry so much about complications from my D as what I'm doing to best control my BG. My heart and prayers are with you.

K, you are amazing. Thank you for sharing your experiences in yet another well-written and meaningful post. Yes, you can handle this. It's weird and strange and difficult (as are all other t1 things, right?), but you are strong and you *can* do it. Wish I could give you a hug and speak to you in person, but this will do. Believe it--you can do this.

Yes YOU CAN! you can handle this...one step at a time!! ((BIG HUGS))

Oh Kerri. I am in that exact same boat. After I had my DD, my opth saw spots in both eyes that he described as "miniscule," "extremely minor," "nothing to worry about," etc. I got a 2nd opinion and the new opth said the exact same thing-- he's "not at all concerned." While it doesn't sound like much, I still feel that I'm no longer one of those lucky T1's who is "complication-free." And that's hard to accept sometimes.
Thank God we have good doctors and treatments, if we ever need them. And besides, that precious little thing is worth a few minor changes.

Hey, I'm another Kerri with retinopathy [although I don't have diabetes, mine's from prematurity], but I totally know the "depressing waiting room feeling" when you're hanging out with the 70 year olds in the ophthalmologist's office [I'm nineteen, been going all my life]. The ophth appointments are the worst of the year, I can level with the others who've mentioned the stress about going into the unknown Moment of Truth when the doc finally looks into your eyes.

I agree with the others. You're a tough cookie, and it's hard, but you can deal with whatever life throws at you!

I always feel like I'm looking in a mirror when I read your posts. We are in the same place in so many areas of our diabetic life. Both diagnosed very young, both past the two decade mark, and both with beginning eye issues. You are not alone in your struggles dear friend! Glad you are finding some peace in it all! Enjoy each day! :)

Sending good thoughts and prayers your way.

Kerri,

Quoting you from a previous meme:

Do you think there will be a cure in your lifetime:

"I was given the old "five more years - we're so close" rundown when I was diagnosed, and I received that same platitude for years afterward. Do I think there will be a cure? I'm not sure. But I think there will be advancements that make diabetes far less of a burden, and I also hope there will be ways to deal with diabetes-related complications that will make those complications just a blip on the life radar".

Remember that what you're going through right now is just that- a blip on the life radar. Hang in there- we're all here for you.

Just one more reason why I HATE that you have this disease! No disease is fair but since I am your mother and you have "this" disease, I hate it the most!

awww... your Mom!! How can I follow your Mom's comment?! *hugs*

I think you were in my Opthamologist's office. But then you mentioned the TV! haha. I hear ya on the over 70 crowd with the big 'cat eyes'. And it's ALWAYS the sunniest day when you have to get your eyes dialated!

I had to have lazer back in 1996. I was checked one day, had to have it the lazer the next. :( However, I haven't had any since. My current opthamologist is happy with how my eye looks now.

They're keeping a close 'eye' on you (ah haha.. I think I made a pun! I didn't say it was a good pun, tho')

You CAN handle this!! You rick! :)

I have to agree with the mass majority YOU CAN HANDLE THIS. We've watched you go through a pregnancy with so much control and dignity, that I know you can handle anything. And if for no other reason but that little girl you worked so hard to get here healthy. She will think your eyes are pretty no matter what.

Right on K's mom! My 3 1/2 year old has had this disease for two years; therefore, at the young age of three he has been diabetic longer than not and I HATE it!! Since he was so young when diagnosed we know there is a very good possibility he will have these kinds of complications. We can hope for further advancements in management tools or even a cure to keep it from happening, but as things are now he will most likely face these things even with the best diabetes control. And that is not OK, but I know HE will be OK. Kerri, you are proof that he will be so thank you for sharing.

Hey Kerri,
Don't worry too much... I lost my right eye to a hemorage, and I now have retinopathy in the left. I go every 4 months for a "check" with the horrible "dialating" process... I swear, I can't deal with daylight for about 3 days lol. Just take it with a grain of salt... you're on top of this. You WILL not worry, or get worse! You have too much to "see" now with your daughter. Be strong, and be YOU!!!
Lots of love,
Beth

You CAN handle this Kerri. Sending you love and hugs and positive vibes my dear friend.

Sorry to hear that.
As many had said already you can handle. Stay positive!
Hugs.

Hugs Kerri!

It's just amazing to me the things that type 1s are expected to take in stride, that just become normal.

You are such a wonderful role model for how to manage this disease with dignity and optimism, and I know that you will be able to handle this too.

But, it is not acceptable that you should have to carry this burden. Please know that others are carrying it with you, and are here to support you!

Kerri, I have been thinking about your appointment since we tweeted about it or do you say twittered. :) You are amazingly strong and so upbeat, but I feel with the option of laser treatments there is a fix if needed. I still have to do the eye MD this year, my last D thing to do until it starts all over again next year. Thanks for your beautiful post as always and your strength gives me strength after 44 years of this stuff for me.

You can do this! Hang in there

"I'm in it now."

Yeah. I remember that first appointment for me too. It's such a weird experience. I'm sorry you're going through it.

And I TOTALLY agree with you about the waiting room! I have the exact same feeling every time I go there! Maybe one of these days we'll be there at the same time and we can sit together - young and relatively healthy - and watch the big TV (which I also think it depressing).

Damn girl. I'm sure you don't mean to be a role model for us, and maybe only some of us see you as one, some of the time. But I gotta say, today's post has this diabetic really appreciating your presence in her life, virtually, if not physically. Thank you for being you Kerri Sparling, and for sharing your strength and insight with the rest of us. Today I needed some of your strength and I am so grateful that you were here to lend it to me :-)

Kerri, this is for your mom, and my mom, and every mom out there who loves a diabetic child: Thanks for taking care of us when we didn't yet know how to do it, and thanks for HATING THIS DISEASE! Because we can handle it, but it's easier when we know you're behind us, supporting and cheering us on. Love you Mom!

There's a lot that I could say here, but I think most of it has already been said.

But just to let you know, I got nuttin' but love for you, girly. You're not alone.

I have retinopathy in both eyes. 5 or 6 spots in each eye. I've had them for over 10 years now & I still haven't progressed enough for laser surgery. So that could be a LONG way off for you. Or not in the cards at all.

And you have that whole better than 20/20 vision thing going for you. I'm totally jealous. I wear "coke bottle" glasses and I don't even know what my vision numbers are because they are THAT big. :P

On a side note, I almost started this comment off with a quote from G.I. Joe ("Knowing is half the battle") but was afraid that would make me seem too geeky. :P

Another side note, YaY me for making it all the way through your archives & finally arriving at today's post ON today. I feel like I took a crash course in Kerri & I'm waiting to see if I passed my final. There are so many people in your life that I feel like I know now. (And wow does that sound incredibly creepy-stalker-like.)

What I'm trying to say in my unintentionally scary/pathetic way is thanks for starting this blog back in 2005. Your journey has made the journey of countless others much easier & far less lonely. You are a diabetic Rockstar! Actually, you're just a Rockstar. (Who just happens to have diabetes.)

I also hate that waiting room (well, the ones I have been to!) and I always hold my breath. I am sorry that there is something there.... but after having my second daughter two years ago they thought I had some spots, then they were gone. Now I am pregnant again and went in a few weeks ago. They think there may be some spots on one eye.... but maybe not. I am hoping they will disappear post-partum. I hope yours diminish too, but whatever happens, you can handle it. Hugs!

This is good news, Kerri! I'm happy that it was nothing more concerning. Also, don't be surprised if you do still find yourself holding your breath during eye exams. It's pretty common for the "retinopathy crowd". :)

Last month I took my 9-year old in for his first "baseline" post-T1 exam. Thank goodness he didn't have to do the dialation thing, and he thought having a picture taken of the inside of his eyeball was really cool. No damage so far...but I worry about it every time I see a high number. Hang in there, mama.

Kerri,

You're awesome and I know you will deal with this well. It still sucks. I've been there being young and in the docs office and saying....something else? This too? But it's great that you are aware and I know there's lots they can do too.

And so glad you have the munchkin!

Melissa

Makes me sad to hear this knowing how hard you try to do your best (which rocks, by the way) and yet we know complications arise and there is not always some clear correlation or link to how hard we try and how low or high our numbers may or may not be.

You can handle this--and more. I just hope you don't have to. Or wish you didn't have to.

((hugs))
amylia

Been there (the same waiting room, likely the same docs) and know the feelings. (And the television shows, in my opinion, are always lame).

But I've since had five laser treatments, and while the first freaked me out beforehand, and the rest have been uncomfortable, they've really just become a matter of course. My eyesight is basically unchanged, and I just think of the procedures as a way to keep my vision (like yours, better than 20-20), the way it should be--unchanged.

Kerri, this post was great. I'm always wondering when I'll join the club, too...

20/16 vision to start with is pretty freaking amazing, though! I'm so envious. :) At least your body gave you a break there. (heh)

Kerri,
I've been following your blog now for 3 yrs and am so thankful for your candor. You give so many people hope and are a continued source of support to me even though we've never met. Take care and all my best to you, Jen

Kerri, you always hit the nail on the head. I so often want to write and comment but I never know what to say!! So many of your posts resonate so well with me. Then to see your Mom's reply, and that is right where I am. Glad to hear everything's going so well with BSparl. I can't believe how big she is getting. thanks for doing what you do everyday to keep us all inspired!!

There's an odd synchronisity in the universe, I suppose. I just had my annual eye exam, better than normal vision, but I had noticed a sport forming in my right eye in the center of my field of vision. My eye doctor examined it, noticed there may be the beginnings of retinopathy. It was a crushing moment for me because after 17 years of type 1 (possibly several that went undiagnosed before hand) I had my first experience with a long term symptom. It was deflating, humbling and a reminder of how vulnerable I really am. There has never been denail in my mind of "if" soemthing is going to happen to me, but a matter of "when". This was my first "when"... then I got in my car, gathered myself and got back to it... there's still more life ahead of me.

Just did my basic eye exam this past week. Chose the optometrist at the local lenscrafters b/c my plan covers it ($5 copay) and lately I'm finding that optometrists (particularly those at high-priced chain eyeglass places) tend to have more up-to-date equipment and procedures than ophthalmologists. (Crazy, isn't it?) For a premium (commercial establishments have to upsell something!), they have a machine (OPTOS) which photographs the retina without the need to dilate, and gives the clinicial much more detail than classical dilation. More/better information, and not having to spend four hours with vision so blurry I can't write a check or try on eyeglass frames? Sold!

Kerri,

I read these and it touches really close to home. I have had T1 diabetes for 32 years ( diagnosed at 5) and I have moderate NPDR in both eyes. Granted , like you we are certainly lucky compared and this is manageable. I am a designer and my eyes obviously mean my living for the most part, so I certainly have the fear in the back of my mind almost always. It has gotten better, as each time I see a cotton wool spot form, I deal with it better than I did 12 years ago when the retinopathy started. Needless to say, there is no concrete answers, but the statistics are on our side. I am going to my Dr at Beetham in a week, and I am certainly a little scared, but hey I have been at the moderate stage for almost 7 years, so it does not mean we are all destined to progress too quickly. Al this does and make me take tighter control and do the things I can effect and simply hope for the best. I wish you the same. ;-)

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