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My eyes were wide, wide open and my pupils were dilating further by the second.

It’s strange, sitting there as the dilation solution starts to affect your eyes.  Things start to look a bit wavier and the light seems brighter.  Then it’s almost too bright to focus and you ask them to turn off the fluorescents above you.

“No problem.  Now let’s talk about your diabetes.”

“Yes, I’m a type one.  Since 1986.  I just marked my 20th year a few weeks ago.  …  I’m trying to get it under 7%, yeah.  No complications.  I do take Altace for high blood pressure, though. … yeah, it’s working okay, I think.  How many times?  Um, I test about twelve times per day, on average.  … Yeah, it makes me anxious not to know what my bloodsugar is.  I did have a  cotton wool spot about a year and a half ago, sort of prompted the whole Altace thing.  It was gone as of September 2005, though.  I’m feeling pretty good.  I exercise a lot.”

He shines the light in my eyes.  Looks at me with that weird miner cap with the light on it. 

“Look over my shoulder… okay … at my left ear … okay …”

The visit goes on and my eyes are wide, wide open. 

“Left eye looks good, kiddo.  You work hard to take care of yourself, don’t you?”  The light shines brightly in my face and I wince a little bit.

“I do.  I do my best.”

“Right eye has that little cotton spot and a very, very small hemorrhage … two very small hemorrhages.  Nothing to worry about, though.  They’re so small.  So over at dLife, what exactly do you do?...”

And I start to cry.  Not big, sobbing, aching tears but the ones that just spill out and you can’t stop them and they burn so hot on your cheeks. 

“Bit leaky there, eh?  Those eye drops make people react differently.  I’ll grab you a tissue.”

Blot at my eyes.  My eyes. 

“So, nothing to worry about.  I wish every patient I saw who had been diabetic for 20 years was as fastidious as you!  Your eyes look great.  Nothing to worry about.”

“The spots, though?  The hemorrhage?  What do I do about that?”

“Keep doing what you’re doing, Ms. Morrone.  You are testing often, eating very well, exercising more than most patients I see.  You are doing a fine job.  Twenty years is a long time with this and you are doing just fine.”

My face is so streaked with tears but it’s okay because the lights are still dimmed and he can’t see me clearly.  I can’t see anything clearly.

“Can I do anything differently?  I want those spots to go away.”

“Well, see how tight you can run your sugars.  And maybe increase that blood pressure medication, because a higher BP doesn’t help.  But just stay on top of things and you’ll be just fine. This is nothing to worry about.  You're doing a fine job.”  He snapped my chart shut.  “Just visit the girls at the front desk and they’ll set up your six month follow up.”

I work hard at this.  Harder than I’ve ever worked at anything before.  I devote so much of my time to trying to monitor my diabetes that sometimes it makes me ache.  I’m scared that it’s never enough, that no matter what I do, it’s won’t ever be enough to keep me safe.  Monitoring bloodsugars, seeing the best doctors, eating a very healthy meal plan, exercising diligently, keeping myself as educated as possible – and it isn’t enough.

People tell me that they wouldn’t know I was diabetic by looking at me.  And now that secret hides in my eyes and I wonder if people know. 

I’m scared.  And I can’t help but blame myself a little bit.  There’s so much guilt with this disease sometimes that it suffocates me. 

I thought about not writing about this on the blog because I’m scared to see it actually written down.  I’m not sure if I’m ready to really face how scared I am of this sometimes.  And I know that it’s just a little smudge in my eye and it may correct itself and all I have to do is work harder, but to have someone regard it almost as what is expected to happen to me … I don’t want what is expected.  I want to defy expectations and have my doctors say, “Wow!  Fifty-three years with diabetes and you are in terrific condition!  Wouldn’t know by looking at you.”  My stomach is in knots at the thought that I’m 27 years old and I’m forced to face more of my journey as a diabetic.  The doctor said there’s nothing to worry about.  My family says it will be okay.  My boyfriend says he loves me today and will love me 50 years from today, regardless of what happens.  I don’t feel sick.  I hardly ever feel sick.  But will it get me?  Will it change the course of my life and make me sick?  Will I ever feel safe or am I always waiting … waiting for that next bit of dodgy news, that sharp poke of a complication, that fear making my heart it’s home. 

I'll keep trying - I'll always try - and tomorrow won't feel as scary.  But today does.  And so did yesterday.

My eyes are wide, wide open and I’m scared to look at myself.  I don’t want to change.  I don’t want this.

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Comments

As your sibling, I applaud you for writing this. There's a lot of stuff on this blog that's light, that's funny, and heartwarming. Those things are good.

But the honesty in something like this is far more moving. Because this blog shouldn't have to exist, DLife shouldn't have to do what DLife does, and Joslin should be known for fighting some other disease.

Diabetes just doesn't impact the person. It impacts the family, and those persons close to those with it. For every diabetic, there's a whole family that lives with this disease on a daily basis.

Whatever the course is, Kerri, you will not want for people to walk by your side during this.

I look forward to the day when this blog is empty.

((Kerri))

Kerri,
Thank you for being brave enough to put your fears into print. As I read this entry there were tears on my cheeks also.

I’m the father of a 12 year old daughter who was diagnosed in February (06). I have been reading your blog for about two months and you provide me with an understanding of how to (attempt) to parent for the long term. I need to understand what she is feeling today, and what she will likely feel in a decade. Anything less, will increase the emotional pain for both of us.

So for me and my daughter, thank you!

First of all, your brother is a very eloquent writer as well... it must run in the family!

Kerri, you're doing an awesome job with your diabetes and with helping other people handle their diabetes.

But for all the cheeriness and encouragement we share, this disease does bring frustrations and fear. Thanks for sharing your experiences, good and bad.

It's only been recently (literally the last year) that I've started to think about the idea of diabetes changing the course of my life or, possibly shortening my life. The unknown is scary.

Boy - your brother made me tear up as much as you did, K.

I hope you know the doc is right, the spots in the eyes are really nothing to worry about right now. I know that doesn't help - trust me, do I know - but try to make that the first thing you think about. I have the same kinds of spots in my right eye. They showed up at around 20 years in both eyes - it's nearly five years later - and the ones in my left eye have completely reabsorbed, leaving just a couple of little "bleeds" as the doc calls them in the right one. I'm still told I shouldn't worry about them. But, I worry, and I get upset and I think the worst when my eyes are tired and my vision gets fuzzy - just like a non-diabetic's might if they were tired.

Seeing this post, I know that someone understands - really understands - how scary it is, how guilt-ridden I feel sometimes, how much I sometimes feel like a gerbil in a wheel - pushing, pushing and getting nowhere. And knowing that someone understands makes the load a smidgen lighter.

I want you to know that I understand, Kerri, and I hope that helps to lighten your load just a bit.

Kerri,
I have had a big battle with retinopathy and I know what it feels like to have the doc say "come back in six months....blah blah blah", as if it's something as inconsequential as a broken fingernail.
Situations like this call for a huge amount of trust - trust that the opthal. knows what he's doing, because that's about all you can do, and then squeeze some good-quality living in in the meantime.

When I started reading this post, I immediately remembered the first time you wrote of that cotton wool spot.

And hoped you would say again that the thing was gone.

Now I'm tearing up. Oh Kerri, you will work harder (as daunting as that sounds), and you will (as you do in everything else) defy expectations.

Many (((Hugs)))

Kerri,

I'm not writing this to make you feel better, but because it's the truth (and yeah, maybe a little bit to make you feel better):

You are doing a phenomenal job. Do you realize the impact you have on me? By doing what you're doing, I have an example to follow in managing Brendon's diabetes. In turn I hope he'll follow my example and continue what I'm doing the way I'm doing it. And seeing how you're doing after 20 yrs, I'm now at ease with what I imagine Brendon's future holds for him.

Those tiny hemorrages and the spot may remind you of how vulnerable you are to diabetes no matter what you do. But after 20 years when complications can be at their worst, you've worked your ass off to hold off what diabetes can do...and you've succeeded!!!!!!!!!!!

You beat that son of a bitch into submission and you will continue to do so for the rest of your life. Go Kerri Go!! I'm at the sidelines cheering you on girl!

Thank you for sharing this. Im a diabetic for 15 years now, and being complication free for this long, it feels sometimes like I can “forget” what can happen as a result of this disease. For a moment I really felt your fear, not because I was empathizing with you, but because your fear became MY fear. I am pretty close to your age and I know that I would feel what you are feeling if I were in your shoes. I don’t know what else to say, except to thank you for sharing your experience.

Oh, Kerri, ouch. This is just the kind of scenario we all dread.

I just know you are going to be OK, but you've shaken us all up today. No matter how hard we work, it never seems like enough.

Thank you for writing Kerri. I read your blog often, and today I am amazed again. Amazed that there is another person who knows the life so much like I do. Cognitively, I know this, but to read your words, I believe it; and it helps. Thank you.

thnak you for writing this.

Thank you for sharing Kerri.

Don't let that fear linger too long - there are much better and brighter uses for your heart.

And I just finally got around to making my eye appointment. I even called back after getting the appointment secretary's voice mail.

Wow Kerri. I think you are doing a kick ass job at looking after yourself and you deserve a huge pat on the back for doing so. Like the doctor said - keep on doing what you are doing - he sounded quite impressed with you.

I know I am not the one who has Diabetes in our family, but I carefully care for my 2 year old that does have it. I look to you for inspiration and hope - because when my daughter is all grown up, I want her to look after herself as well as you do.

Please don't stress yourself out about this. I know it's scary, and every once in awhile it hits you (you are welcome to have "scary" days when you have a chronic disease) but please know that you are a role model for so many .... you really are doing a great job .... REALLY!

Big hugs coming your way.

Kerri,

Nothing that I can say would make this any easier, but I applaude your courage, your dedication, your honesty, and your hopefulness. Thank you for all that you do.

Beth

*hugs* Kerri.

I too, cried when I read this. I've had type 2 for just over a year and I know that feeling of being scared that however hard you try, it's not enough.

You are doing a great job.

I feel you pain and wish I could take it away .. I remember when the docotor first told me of a few spots how I cryed and he told me to get myself together and stay calm unfortunatly I am not the perfect diabetic and Kerry your one of the most diligent people I know I think for sure you will be fine just keep it up I unfortunatly gave up and am tryin to find my way back don't beat yourself up YOU DO ALL YOU CAN! and yeah this disease sucks . HUGS

Kerri,

You work so hard, take such good care, try your very best to stay well while living your real life. And you inspire all of us by writing so beautifully about what you do. Thank you for writing about this scary news...I can relate to these feelings so well. After 26 lucky years, I've finally begun having the first tiny bee-stings of early neuropathy in hands and feet, hard for a violinist to face. Nothing yet, really...The spots are so small...

Somehow it's a long trip, that little distance between "IDDM, no complications" and "IDDM plus a tiny spot or sting."

Kerri, it's not our fault. All we can do is live well and keep fighting, and the rest is luck.

Good luck and hugs,

L

There are fears that we have to live with every day.

Several years ago, when I was in high school, my endo put me on Altace because one of my kidney tests came back a little off.

These problems have not come back, at least not yet, and they scare me to death. I try not to talk about my problems very often either. Every backache I get, I worry if it's my kidneys sending me a warning, when in reality, it's probably just a chair that doesn't support my spine.

My control isn't the best, and I know this. It's only recently gotten close to being good, but every little pain, sting, tingle, every little comment by doctors fills me with fear. My own eye doctor found "the tiniest, most minute bit of background retinopathy" at my checkup this year. He told me most people who have had diabetes for going on 20 years has this happen. I couldn't even say the words when I got home from the appointment. I had to say it syllable by syllable to Matt, hoping he wouldn't burst into tears along with me.

I think this is part of why we all start blogging. We don't want to be scared, and we want to know that other people are going through the same thing. It's hard. It's ridiculously hard. But we're here for each other. I'm sending about 8000 mental hugs your way. I hope you get them.

Kerri,

Guilt is SUCH a large part of this disease. Me, I have had the D for 45 years. I have taken good care of it, but honestly not always, always, always. How does one define ALWAYS? I have had laser on both my eyes and a vitrectomy in one eye. I remeber being told that we diabetics must be vigilant but we can only do so much. We cannot, even given all the progress that has occurred in diabetes care, prevent completely all complications! That does not mean we should give up because then the complications, well they WILL destroy us. It is a never ending battle. You are doing very, very well. Be proud of yourself! I am saying this from someone who has had this lousy D for 45 years. No one believes that I am soon 55 years old. Last summer someone in the park took me for being maybe 20-30 years old! Another time in the bus when I was talking about my 30 year old kids, she turned around and told me "No way do I believe you have children who are that old!" Diabetes not only hurts us but it also makes us fight to keep our health. I am thin, happy(well most of the time ;-) ) and I am telling you this because you can succeed too. With a little bit of luck we both will.

scared? i'm so sorry. i feel scared now. i'm already an emotional wreak today and now i'm crying.

i hope you can feel better soon, it's horrible know how hard one has tried and still you get thrown shit!

I love you.
- Laura

(Hey, there's another Laura G. here?!? Damn. I'll have to start calling myself SparkleMotion to make the distinction :) )

Oh, Kerri. What get's me -- beyond that darn cotton spot -- is the Doctor's utter unawareness of the fear that accompanies you (and us) daily. To be doing well and to have anything -- anything more than this diabetes -- is to be not doing well. To be scared.

Hugs to you!

Kerri,
Wow what a heavy post. As others have said I too can relate on the most personal level with this post. It seems as though the days when you are least expecting these kinds of things they land in your lap. I try to take care of myself to the best of my ability but no one not even the strictest diabetic is perfect all the time.
You are an inspiration to many and we all can feel your pain.
Hold your chin up Kerri. Tomorrow will be better!!!

Kerri,
Your inspiring, honest posts were one of the reasons I started my blog. This is a scary disease, and it is so easy to fall into a pattern of blame and guilt towards ourselves when we hear news like you did. I've had diabetes for 25 years and at around the 20 year mark my opthamologist saw background retinopathy changes. There has been no advancement in it, even though I have much to improve in the way of control. Sometimes it isn't as simple as "If only I had an A1C of 6.5". You are doing a great job, and everything you do to stay healthy does help. Still, I understand the discouragement when you are trying and it seems like it doesn't matter. I have a few suggestions on my most recent post about dealing with this unforgiving, relentless disease. Don't lose hope.

Kerri, that's absolutely my greatest fear with this disease, I think. Tacking on "it's nothing to worry about" after saying you had two small spots would not reassure me either.

But never lose your incredible positive energy. I don't believe we can live our lives worried about what might happen 50 years from now. We have to do our best - okay, I could do better - but all we can really do is keep trying day to day.

I tried to write something insightful several times now and it's just not coming out right. So I'll just say, thank you for helping us to all realize that we are not alone with this disease.
Caren

I keep trying to figure out what to say in response to this.

Part of me is completely admiring that you're brave enough to admit and post about how scared you are.

Part of me feels guilty as hell that I'm not doing enough for O.

And part of me is afraid that she'll feel this fear, too. I hate that that's a very likely possibility.

thinking of you...hugs:)
I don't have anything insightful to say, I just pray there will be a cure soon.

With just one year of T2 under my belt, I almost feel unworthy to comment on this post, but I do know fear of all kinds. You are very brave, you are smart to share this here where the OC can join in supporting you. We all get through fear the same way - doing the best we can and putting one foot in front of the other.

Hey Kerri,

Tough message to hear, no two ways about it.

All we can do is our best. And if life should hand us some things we don't like, we have to roll with the punch, and get on with getting on.

You have incredible inner strength, and yes, you have received news that was not great, but it will not slow you down at all.

And through our long and healthy lives with diabetes, we will probably have to face more of this. But, I can see the two of us, and many of our other friends, in another 20 or 30 years getting together to talk about how well we are still doing.

In the big picture, you are doing very well.

This comment came out pretty crappy - not at all what I wanted to say. But I think you get the gist of it.

Take your time to feel the things you need to, but when you are done, you will see, that life goes on.

Much love - Scott

I've had moments (days, months...) like this myself.

No words of wisdom. But I totally get it.

-Stella

Kerri

Thanks for being so open about something that scares all of us (with diabetes). I hope and pray that your eyes stay as they are.

Please don't take this as the beginning of the end, I think it's just another phase in your life with diabetes and it doesn't indicate anything except that this is a stinky disease.

Big oops. Can you tell it's late at night? I'm not Kerri and I am sorry about posting the last comment with your name.

Bernard,

You signing in as my name to leave your comment made me laugh. I changed your name to reflect the Actual You and made the conscious decision to snap out of this funk I've been mulling around in all week.

Thank you all for your kind comments. This little glitch is not the end of the world. It was just a big shock. And while this mess is very frustrating and causes such heartache sometimes, I do the best I can. We all do the very best we can. This eye thing is not a sign of failure but a call to action for me. I'll buckle down even harder and fight to get rid of it.

But just so you know, it's easier to keep trying knowing that you guys are all out there. And that we're all always supporting each other. Thank you so much for just being there.

-- Kerri.

K,
We all have those same exact thoughts you do, some people are stronger than others and can deal with it, LIKE YOU...but, people like me...I dont know about...you are strong and healthy, and you can get through anything. Its good that you are writing about it, and sharing this with us.
~G

Thank you for voicing your fears and worries as well as your decision to "snap out of of the funk" too. Thank you. Your willingness to share your journey has given me strength and a sense that I am not alone and for that I am so appreciative. You are brave and graceful and so successful in your approach to this disease. And I am very grateful for you and your remarkable voice.

Hi Kerri, I haven't been around for awhile, but I wanted to let you know I'm thinking about you. (((HUGS))) You're doing a stupendous job. I am hopeful that the CGMSes, when they come on the market, help people run their sugars tighter,especially at night. That will be helpful to everyone. Take care, XOXO

Hi Kerri,
Yes, we too get the doctors telling us we are doing a great job with our son even though we know he is never out of the woods so long as he has D. However, I have to add that we are personally encouraged by the fact that my father has had D for 40 years (as long as I have been living). He is now 74 and has no complications yet. Dad's D was always unstable while on protophane and the unpredictable and frequent hypos which traumatised the entire family are what I believe have saved him in the long term. HOWEVER, I do believe that now he is on Lantus (since three months ago), it will continue to be a safer journey. We are waiting for the pump for our son at the moment which is again encouraging. Biomedicine is here now and here to stay and it is growing rapidly in its potentials to improve management and finding cures. Now, there is no reason for us to ever look back. I will ensure that my son has a long future. I choose to be happy so that he is happy too and he will be able to look back and be able to say he had a good childhood not a miserable one - despite what he has on his plate at this point in time. We are actually looking at the Omnipod and anything that will make it that much easier. When something better is available we will update to that too. Whatever it takes to keep those blood sugar levels within the normal range we will pursue with no hesitation and with a smile on our faces. They just need to speed up getting a "real" non-invasive blood glucose monitoring system out there. We all hate fingersticks!! However, for now, the continuous blood glucose monitoring systems should help considerably. Finally, I can say we are living in a time where there is lots of hope compared to 10-15 years ago when there was no hope at all!
The words that I would be heeding from your doctor is "keep doing what you are doing". Remember, you have had D for 20 years which for the most part insulins weren't that good. With all the options out now, you can reverse any small signs of complications. So don't be afraid. These are the cards in life we have been dealt with and we can only play them as smart as we can and with courage and determination.

We will not be beaten!

Elle.

First time here, having come from Grand Rounds today. You are a complete inspiration, not just to others with Diabetes, but with those of us battling obesity and hypercholesterolemia and any chronic condition that places us a risk for an early demise. Hang in there and keep up the amazing work!

Holy crap. I feel like I just found a gold mine and you are it!

I was diagnosed at six with type 1 as well. I'm 29 years old and having "blues" day so I decided why not search the web for someone who can relate. Misery loves company right?

I found a lot of blogs where a diabetic writes of their complications. But yours, yours somehow brought me out of it.

I suddenly feel that urge to take tighter control again. To take the reigns on this rotten diesease and steer it to success.

Let it be a Mack truck that takes me down. Or a lightening bolt from the sky above. But gosh darn it, don't let it be my negligence and a complication from diabetes!

I wasn't perfect yesterday on my control and I highly doubt I'll achieve it today.

Okay you and I both know there isn't such a thing as a perfect day, but thanks Kerri. You gave me the inspiration I needed to continue the attempts.

Kerri,

I must have missed this post the first time around, but after reading it (due to a link on your current post) I just had to write a comment.

I know exactly how you feel. E X A C T L Y.

Five years ago (my 21st year of Diabetes) I visited my ophthalmologist and got the same exact news. I had 2 microaneurysms in one eye. He told me it wasn't bad, but I needed to focus on my control more.

Well, I did and the next time I visited, I was told that they weren't visible anymore (and they're still gone!). I have my next retinopathy checkup in early December and I hope that is still true...

So keep up the good work, keep focused, and keep positive!

Zak

Hi Kerri!
You are hanging in there. That's what we've got to do. I was 18 when I developed Type 1, and now it is 44 years later. After the first 23 years with no monitor (1985) I was told I might need laser for the microaneurysms in my right eye. I was really scared. But soon after that I got a monitor (they were new then) and learned to get in good control. A few months later I had another exam; I asked, "how are the microaneurysms?" The doctor said, "what aneurysms?" When he left the room, I buried my head in my coat and cried with relief. I still haven't needed laser! and better yet, I'm still getting good reports. I also test often (8-10 times a day) and use food, exercize or insulin to adjust. Vigilance counts!

I am 36 years old and have had diabetes since I was 21.I think I am type 1. I am about a 110 pounds overweight and have been battling this weight problem since I was diagnosed. I have had a spot on my right eye for about 2 years now. I have also started having pain and burning in my legs and feet. My ac1 level was up to 11.25 for quite a while. I have managed to get it down to 9.0 which is still extremely high. I am so scared that my life is over. I have 5 children anda wonderful husband I would like to grow old with but it doesn't look like that is going to happen, I guess I blew my chances for that. I feel like its too late. I feel like these complications have taken over my life. I don't know if I should keep trying or just give in. I have lost hope. I have been on the internet looking for some piece of hope. I stumbled upon this site. I feel so guilty about not taking care of myself. I've been crying all morning to my husband, I just feel as if I am dying. I don't know what to do. It seems everyone on this sight has had tight control of their diabetes. Maybe someone could give me some tips

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