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Ding! Diabetes!

Crap happens. 

Case in point:  last week.

First off, my frustrations about diabetes are at an all-time escalation point.  The blood sugar logging, even though it is working and my averages are already in a better range, is very time-consuming and is a constant reminder of diabetes and all its trappings.  I'm logging my blood sugar tests, the food I'm eating, the exercise I'm doing, and the boluses I'm taking.  Everytime I go to jot down a result or log a carb, a little alarm goes off in my head.  "Ding!  Diabetes!  Ding!  More diabetes!  Ding, ding!" 

Secondly, I called Joslin to follow up on the photos they took of my eyes.  "Oh, hi.  Yes, you look good.  Twenty-two years, huh?  Wow.  Well you only have mild retinopathy in your right eye and barely anything in your left."

Well there's a word I've never heard before.  Not directed at me, anyway.

"Excuse me?  What's that?"

"Mild is when there are less than five spots.  So the right one is mild.  The left, too, but less than the right."  She said this like I was aware.  

"That's news to me.  I had a dilation in January and there was a little bleeding, but he didn't say that's retinopathy."

"Well did he say you had bleeding?"

"Slight, yes.  In the right eye."  Am I an idiot?  Bleeding IS retinopathy, stupid Kerri.  So since it's been there for months now, why are you getting all freaked out?  "So yes.  Sorry.  I just haven't heard that word yet."

And she explained the follow up and what would happen next, and we talked about how it might be handled if my retinologist in Stamford decides lasering it before pregnancy would be a good idea.   And the more she talked, the more I realized I wasn't getting teary or upset or sad about it.  I felt pretty damn mad.  It's never enough to really beat this thing, or at least it feels that way on some days.  After a certain amount of time, no matter how hard you work, something gives at least a little.  And in this case, it's the blood vessels in my eyes.  Now that box is checked - the one that says retinopathy - and slowly my dance card fills up.

My body feels like it's caving in a bit these days, and I'm trying to stop that avalanche from devouring my optimism.  Between the constant logging and the wrist issue and now this checked box, I'm frustrated with diabetes in general.  I need to find a little extra grace to get me through these moments.  Got any? 

And thirdly, added to this pile is the fact that my literary agent and I parted ways last week, and I'm now searching for new representation.  (If you are a literary agent or publishing house and you're reading this, email me at kerri [at] sixuntilme [dot] com.  There.  I said it.  I'm actively looking.)

So last week sucked a wee bit.

Violets on the rocks.
 
But waking up Saturday morning to awesomely warm weather and spending the afternoon with one of my best friends?   Spending Sunday cheering another buddy across the finish line and gossiping over breakfast?  And rounding out the weekend with a long hike in the woods and then taking in a movie?  All enough to pick me back up and set me straight again. 

Last week knocked me around a little bit, but I'm trying to stay positive.  I'm done bitching and moaning.  Time to move on.

It helps that in three weeks, I'll be on a cruise in the Caribbean for my wedding anniversary.  Hey, I believe firmly in the power of vitamin D.  :0)

Comments

Keep the faith Kerri! This whole D thing is a life long marathon for us and most marathons have some uphill stretches!

Hang in there Kerri. You are doing Great. You are doing all you need to do. Sometimes we simply have no control over our body. It sucks. No doubt.

The cruise is much needed and wow, 1 year. Woo hoo! Congrats. (a bit early yes but still)

Hi Kerri,
I hear you!!

I find logging to be a real pain too. It is just another thing to remember to do, and it is a pain with so much going on in a busy life.

It is a challenge but one you can manage. Hang in there.
Cynthia

Kerri!
The vitamin D is miraculous! I had ketones and a stomach bug last week, but i spend yesterday in RI at a place called The Umbrella Factory, I'm assuming you know of it... the sunshine and animals made me feel so rejuvinated :)

I'm glad your going on vacation because it sounds like you are at work and even working while your not at work all the time!! And I'm also sorry about the retinopathy diagnosis. I know what you mean about hearing certain words. I've been scared of being "blind" for many years now because they all said I would be. I'm glad both of us are still okay!!

Hi Kerri,

Just wanted to tell you that you rock. It sucks to have weeks like that, but good for you in pushing forward! Onwards and upwards- hope this week is less sucky :)

-Allison

Glad to keep up with you in your battle with Type1.
I am only Type 2 and off meds (not with permission) I do very sporadic readings but I think my constant exercise and diet help... Keep up the good fight.

Oh, Kerri, doesn't it feel like it's always something? If it's not the day-to-day difficulties of dealing with diabetes (am I hot because my blood sugar is high or because it's low or just because it's HOT in here?), it's the bigger issues. But we're all fighting the good fight, and you inspire us to be stronger than ever. May this week be a ton better!

I can only imagine it must be scary to hear the word retinopathy. The most important thing is early detection, which it sounds like you got. If you ever want to talk to someone who understands this topic intimately, let me know. I know an optometrist who has type 1 and is also a CDE. He's a wonderful person and always has great information to share.

Boo for your sucky week. :( I have "a leak" in my eye too, but since no one said the R-word, I'm pretending my box isn't checked either. Sometime a little denial (as long as it isn't dangerous) and help us through.

We'll have to compare notes on anniversary cruises too. Pea and I said good-bye to our tax return and booked one for our 5th anniversary in June!! I bet you are a ridiculously excited about it as I am!!!

Aw Kerri...it makes me mad for you. For me, too. It's ok to be mad. Use it to keep you moving in the right direction.
Enjoy your cruise :)

Oh, ugh. I had my box checked in February 2008 (and I'm only 15+ years in!) - I had a hysterical crying fit on the phone with my mom in the middle of the sidewalk on E. 60th Street. And it was a scant few months after my Hashimoto's stopped being subclinical....

Not to kvetch, just to say you're absolutely not alone. It *is* always something, and as I get older (and the D "ripens") I find I'm much more foot-stampingly MAD about the unfairness of it. It's hard as hell to find an iota of positivity some days!

Hi Kerri,
Sorry to hear about your week. But I must say, you are SUCH an inspriation for always bouncing back!

I'm sorry to hear about everything that's been going on with you. I feel your pain and frustration. Some days I'm just waiting for the other shoe to drop... because honestly, what else could go wrong right!!! :) Hang in there, I know that it's not always easy but you are doing a great job!!

Hi Kerri
We all have bumps along the road. What helps is that as I am typing this comment, God is making huge plans and we don't know what. Sometimes we want to know when or what.

Happy One Year anniversary soon. The caribean trip sounds awesome. Something to look forward to and recharge.

Oh Kerri, I am sorry you had this bad visit. My daughter (13) had a bad endo visit today and i want to ask your advice. Her A1c is going in the wrong direction, she spent 70 percent in high range and 20 percent in low range, 10 percent in goal. Why? she's not bolusing. A whole day, no bolus. She's testing, I can see that, but not bolusing. Why? I don't want to. I am sick of this disease. When she is with her dad.... no problems. ...she is afraid he will freak out. So what do I do? Make her afraid I will freak out? Did you have this adolescent want a vacation? I am holding back my fury because I know that isn't productive, but do you have any advice? Thanks and have a lovely trip with that lovely Chris.

Well that's life dude.. everything happens for a reason... just don't loose hope and live everything above.

Dude. I am so with you on this one. I have had diabetes for 27 years and the other day I totally had a bad pump day, my BG levels were all over the place I had a "No Delivery" from the stupid thing, and so I just took it all off, and had a protest the pump day. I went a few hours without it, gave my self an old school shot, and got back on track, after a few tears, strange looks from my boyfriend and just not being hooked up to the dang thing I felt better, minus the high blood sugars. SO I think it is a-okay to have a protest diabetes day. I am sure there are people out there who dont have diabetes under 35 that have retinopathy. Your blog makes me feel so much better about the totally normal things that we get to deal with after 20+ years of this! Thank you!! And keep on truckin'(or pumpin') its all we can do:)

... a little positive energy needed? I love that photo. I'm from Littleton, Colorado, which is where, you might recall, there was some major school violence 10 years ago. A photographer paired a photo with a poem/song by John Denver, to make an inspirational poster about it.... The song is called The Flower That Shattered the Stone. The photo was a columbine flower, very similar to your photo, and it's growing right out of a crack between two granite stones. We have the poster in, I am not kidding, our bathroom, at least right now.

Kerri - be the flower, okay? You can shatter the stone! Most days you do - this was just a lousy few days. BTW - the flower grows where's there's water and sunshine... I bet your trip helps ;)

Take Care! AJ

You're not alone. I just turned 30, and started having proliferative retinopathy (my eyes skipped the nonproliferative step) four years ago. There was a lot of crying and anger then, repeated at various intervals over the past few years. My right eye was clear until January, and I absolutely laid into my ophthalmologist because he had sworn that it wouldn't happen necessarily after I started pumping. I then spent a good 40 minutes sobbing -- in a bad part of town, because that's where his new office is -- to my mother about how it wasn't fair, I hated it, and I was going to go steal a pancreas from our transplant hospital.

Wash, rinse, repeat yesterday. My A1c's gone up, my numbers are all over the place, and even my endo has no idea. He found evidence of RA damage, and finished the appointment by thumb-tacking my graph (with my name blacked out)in the physician work area/lounge, with a note that said, "If this was your patient, what would you do?"

I've about had it.

I was diagnosed with retinopathy at age 18 and am now 29 and my retinas are healed. I spent a few years dealing with rapid changes in vision and with really bad breakage to capillaries, and later, the larger blood vessels. The topographical imagery looked like the Rocky Mountains.

I don't know how it turned around - it's not like my A1c jumped instantly to happy or anything, but the human body amazes me. I tested more often and even took a supplement (it was cow eye, actually - tried not to think about it). My current eye doc says she wouldn't believe I'd had that kind of damage if she hadn't seen the pictures herself, but I'm R-free.

So, I don't know. I always comment you with an anecdote from my own D-past. I'm just saying don't give up on your peepers just yet. :) Who knows what this continued success (and, UGH, logging) might bring your way?

In the meantime, we're here for you. Your readers, your friends, your d-family. Sorry for your rough news.

I'm a mother of two who desperately would like a third, but just thinking about logging, etc. scares the crap out of me. I logged three meals and three snacks a day (including carbs, fat, and fiber), glucose, boluses, sleep, illness, exercise, housework, fights w/my hubby- anything that might affect my stress level therefore/or my glucose. When all else failed my medical team has been known to ask me what might have gone wrong. My reply (mentally, at least)- "I don't know! You are the doctor/diabetes educator. I'm following your 'Nazi regime'. You know I am feeling a little stressed virtually every second of every day, but, well, that's because you told me each and every high bg affects my in-utero baby and despite spending all of my time and energy trying to prevent this my diabetes still wants to be in charge of me instead of the other way around."

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