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Dear Diabetes.

Hate mail:  I haz it for the D.Dear Diabetes,

You suck.

Yes, there are more eloquent ways to express my frustration, but that one, simple phrase really sums it up for me today.  I could talk about how I was up before the sun, battling the ridiculous Boston commuter traffic to make it to my 8:30 am Joslin Clinic appointment on time, just so that you could be checked on.  ("Checked on," as if you are going anywhere.)  I could mention how the nurse chastised me for being eight minutes late - "You're on me for eight minutes?  I've waited multiple hours to see the doctor in the past, and you're on me for eight minutes."  I could bring up the fact that I ran like hell from the garage over on Pilgrim Street in efforts to be as on-time as possible for my appointment. By the time the took my blood pressure, I was through the roof with anxiety. 

Today's endocrinologist appointment was a disappointment, diabetes.  Because you suck.  I hate how my A1C hasn't come down nearly enough to reflect the work I've put into managing you.  I'm back at the gym with frightening regularity.  I'm back up to testing at least ten times per day, and also wearing the Dexcom every day.  I change out my infusion sets every three days.  I am LOGGING blood sugars, you stupid fool.  I've lost a little more of that pesky baby weight since my last appointment (down four more pounds).  I eat well.  I try.  I try and try and freaking try, and my A1C is 7.8%.  

"This is better than December, when you were at 8.6%," my endo said.  "And since you aren't having nearly as many lows as you were in the past, this is a truer result.  I much prefer you to be more even than to have those sharp spikes and lows.  This is going in the right direction."

Her words soothed me a little bit, but not enough.  I want a more solid A1C, one that reflects the work I've put into my health.  I feel so angry at you, diabetes, for being such a pain in the ass.  And a scary one, at that.  I want good health.  I want a good quality of life.  And right now, I'm having a hard time lining those two ideologies up. 

Diabetes, you make everything just sticky enough to catch guilt and fear in your fly tape.  An early morning drive in bumper-to-bumper traffic for two and a half hours is stressful and frustrating, but you have to go and throw my blood sugar from 106 mg/dl up to 178 mg/dl.  For what - for fun?  Last night's workout ended at 111 mg/dl, but then crashed into the 50's for kicks?  Why do you complicate every little moment?  Why do you suck so much?

... Wah wah wah much, Kerri?  Yes, I'm in wicked wah-wah mode.  But I am so mad that my efforts in managing this disease don't always reflect on paper.  I am angry that it's never truly "good," but only "good enough."  And I hate being in this state of mind because it contributes to more chaos than calm.  For me, being in control of you means being in decent emotional health, and it's hard to feel emotionally capable of controlling a chronic illness when you can't quite control your tears.  Or your anger.  ... or both.

Diabetes, you are stupid.  You are annoying.  You're a thorn in my side.  You frustrate me.  You make me create  brand-new curse words because the ones that already exist don't do you justice.  You make me cry.  You make me pound on the steering wheel of my car like Donkey Kong.  You royally piss me off.

But you don't define me.  And you won't own my whole day.  I just want you to know that despite your efforts to screw with me, I'm still here.  I'm still trying.  And I will kick your ass.

Sincerely,
Kerri.

Comments

Well put Kerri. We're all there with you :)

Woke up last night frantic, checked, was at 52... fast forward to 10 a.m. when I'm at 574... I even bolused to cover my sweaty, shaky overeating. Yes, Kerri... diabetes sucks. (As does the fact that I lost my Dexcom transmitter and don't have the $199 for a one-time replacement.)

A1C is the ultimate, quintessential arch nemesis. And a complete wank.

I love the Donkey Kong approach to Diabetes frustration lol-let's throw some coconuts :O

Some days (most days) doncha just wish Diabetes was a person so you could punch it in the face?! (An evil person like the villain from the movies of course, so they would have it coming).

I'm not going to tell you "it'll get better, just try your best, always look on the bright side" or any of that nonsense people always tell me that makes me see red.

Instead, for today lets just start a roaming mob of diabetic peeps and start throwing some freaking coconuts.

You've got this. When the Big D is kicking my heiny, I try--HARD--to celebrate the little victories. Your A1C dropped almost a full percentage point! That's amazing!

Kerri, you are so right, it does not define you. It is just one part. A part that may take time, maybe a long time, to manage. You CAN do this, you are on the right track. Remember it is a journey and you're getting there.

My favorite line: "Why do you complicate every little moment? "

Sounds to me, though, like you're doing a freakin' awesome job.

As the mother of a 10 year old T1, you have expressed my every thought and summed it up well. Diabetes definitely does suck! And as the caregiver of a T1, there are days that it sucks the life out of me, just like it does the my daughter. We cry and pout, and then move on. Diabetes may throw us a curveball, but it will not strike us out!

"But I am so mad that my efforts in managing this disease don't always reflect on paper."
That is my frustration too!
Thanks for writing this wonderful article.

I'm so sorry you had a disappointing endocrinologist appointment. I had one about two weeks ago and I still can't get over it; it's the first time I've ever walked away from my endocrinologist upset. However, I'm STILL waiting for my A1c so I can call my endocrinologist and tell him off for suggesting that I have pre-diabetes at eighteen years old with an overweight but by no means obese BMI.

Kerri, I am SO proud of you for getting your A1c down from 8.6 to 7.8. That's am amazing feat!

Kerri, remember it's just a number. Treat it as information. Though I can see how frustrated you'd be after working so hard on it.

What meter are you using to calibrate with? I had issues in the past with higher than expected A1c values when I was calibrating my Dexcom with a OneTouch meter. Once I switched meters (and almost nothing else) my A1c dropped 0.5%. My speculation is that the old meter was reading lower than my real BG, so I didn't correct when I should have. With a more accurate meter I was truly closer to my real BG.

Hope your eye is on the mend.

You have a way of putting into words what we all feel - "This totally sucks".

My struggle is the gym. Every great workout has me chasing one low after another - and any improvements in my A1C is a reflection of that. It's so frustrating! (and the scale just mocks me)

Thank god for my Dexcom, though! I swear it's saved my life. I guess I just need to keep tracking and tweaking until I can wake up in the morning and not find glucose tabs all over my bed. (this is why I don't deal with liquids. lol)

Keep up the good work, Kerri. You are an inspiration to all of us who walk the same path.

OMG, this could not have been more timely! I wrote yesterday about how much trouble I've been having lately. Maybe the D gods are angry? I don't know, but I agree, the time-consuming, complicated management of D just...sucks. I am so tired of doing all the crap that I have to do just to stay alive. Trying to find my way out of this hole!

We had an appointment like that on Tuesday after fighting rush hour traffic in Atlanta (actually two appointments since both kids are seen together!). After the visit, my 10 year-old daughter wrote this poem:

BLOOD SUGARS
Blood sugars low
Blood sugars high
Blood sugars that keep you
up all night.

Blood sugars good
Blood sugars bad
Some blood sugars that
make you mad.

Frustrating as can be
Now I am high, can't you see?
Frustrating as can be
Now I am low, how can that be?
Takes so long to get it perfect
Blood sugars
Blood sugars
Work it, work it!

Kerri, you make me feel normal. Keep on writing.

Who needs eloquence when you can have honesty? Had a mean 303 (for the second time in 24 hrs) yesterday, 221 this a.m., followed by a vengeful 74 just now. I've been screaming and crying over my horrid highs for two weeks now. So, I'm just gonna tell you what we all need to hear sometimes: YOU CAN DO THIS. And I think I can, too...Thanks, as always, for your honesty.

We've all been there and yea... you will kick it's ass!

{{HUGS}} amiga!

MBP - exactly. And it always seems that it's when you're having one of those days (or weeks) that someone says "but you pretty much have it figured out now" or "you're into a groove with it now"..... and all you can do is stare blankly back at them and say "yup"... because you're just too far spent to offer any other response.

AMEN! Diabetes does MAJOR SUCK!!! I can't even begin to express how much I hate it. It sucks when you try so hard and it looks like you're not. Hang in there, because your efforts ARE worth it!

I don't think your giving yourself enough credit. 7.8% isn't too bad and if your epic lows aren't super consistent then I think you are doing an amazing job and you are a reflection of your hard work...good job Kerri!

I was at Joslin this morning too. I had the nice jump from 84 to 244 when I got there because I was so nervous for my appointment. In addition I got the phlebotomist in training and she couldn't find my vein so I got poked in both arms! I'm sure I will have a beautiful bruise for the 4th!

Yes. You. Will. (kick that D ass.) ooh, maybe I just made up a cheer for you. get some pom poms...okay, back on point. I find it really tough when the drs. are all about eliminating the lows, which I totally agree with, but don't seem as worried about getting those Fing highs out of town. It's frustrating, to say the very least. No matter how "good" we are/do, there's always something else. I also think there's some inaccurate perceptions by the MD community that getting a flatline at a higher BG level is comparable to lowering the A1c. Not so much--the flatline is so much harder for me! Ugh. Anyway, we're here in the D boat with you, and it's not going to sink. I'll share my pom poms and do some more cheers, too.

"I hate how my A1C hasn't come down nearly enough to reflect the work I've put into managing you."

This is how I feel. At our last appointment, had Q not been in the room, I would have said "WTF!" We test, we bolus, we basal test and yet her A1c is still too frickin' high.

And being asked what I think we could do better is not helpful. NOT HELPFUL. If I knew what I could be doing better, I'd be dong it!

You tell me, aren't you the medical professional? (Just goes to show how much diabetes really is a self-managed condition.)

Ugh!

I'm right there with you. But I'd like to say congrats because you did see great improvement :)

An excellent open letter to our common enemy.

Seriously, why does it have to suck so much? When I was on vacation recently, I grew so weary of it intruding on my week of bliss and relaxation, I told my husband that diabetes had turned it into an anti-vacation. Can't I relax for one day? Not get my pump tubing all tangled up? Not have my sensor go off four times in one night?

Hope tomorrow is less frustrating!

You WILL kick it's ass Kerri. You do every day. I believe in you.

Great post Kerri. I think that we all go through the mental state of wondering why my A1C is not where it is supposed to be at even though the blood sugars seem to be in a good range. But look at the good side of things. You are exercising, you are eating healthy, you are doing what you are supposed to be doing. These things are giving you a better opportunity to manage this disease. That is all you can do. Do the best to manage it, and don't fret over the parts of life that you just can't control.

I am treating my low right now while reading this, on the verge of tears. This letter captures every single feeling I have toward this stupid disease. My A1c is almost the same as yours, 7.9%, and I am in the same exact boat. Wear my sensor every day, change every 3 days, test often...and I feel like I'm spinning my wheels. I wish none of us had to deal with this. *hugs*

To Bernard's point, as you know I am currently "examining" the results of my meter. Pre- CGM, for 2-3 years I always left my endo appointments crying that I didn't understand why my a1c was not where I expected it to be (higher). And I think I finally found the answer. I understand your frustration. We all do. And we all feel it from time to time. But you did great bringing your a1c down that much in just a few months. That you deserve a lot of credit for. And I hope you realize that! The fact that you try so hard means a lot. Don't take that away from yourself.

Kerri, it's almost as if you stole my feelings from my June 1st appointment. Biking, eating better and testing more got my A1C all the way from 7.5% to 7.4%!! As a 44 year old male with Type 1 for 25 1/2 years, I almost needed the ladies in the lab room to console me after they gave me the results. My Endo said I was doing great, considering I'm on shots and all, but still.

On a positive note, lowering your A1C by more then 3/4 of a point is outstanding!! Keep up the great work and it's always reassuring to know that there are many of us out there trying to kick ass!!

I completely relate Kerri! Am in the midst of a morning hypo as I type, so best get to the kitchen for some breakfast. But your letter reminded me of one I wrote to my own pancreas a few years ago... http://sweetful.wordpress.com/2011/01/14/25/

You tell it who is boss, Kerri! Suck it, diabetes! I'm sorry for the crummy endo appointment and I know how frustrating it is when your A1c results don't reflect all the hard work you're putting in. But I'll be another person to say that you ARE putting in the work...and then some. Don't discount all that you've done to manage this fool called diabetes. Your endo is right. A dip from 8.6 to 7.8 IS progress in the right direction and I know that if you keep up the hard and good work, you'll see even more change next time. Keep it up, K, but also vent to us and give D a swift kick in the nads and don't beat yourself up too much. :)

So last night i was low, shaking so bad i could barely test. after i got that number up, it stayed in range for SIX HOURS STRAIGHT, not even moving up or down 2 points. ah, but exercise. i had to eat something before that...and now i've been fighting highs the whole day since my meter broke. now my blood sugar is 39 with no intention of going up. damn this disease.

Now *thats* the way to rage! Well done! Days like that just make you want to crawl back into bed. And for the record, I think that is a fan-flippin-TAStic A1c.
Yours in D ass-kicking solidarity,
Sherry

Girl I can tell that you are pssst.... about the D thing.

We all have days like yours.

Thanks for sharing.

Well, my A1C has never been as high as yours, BUT ... I have never been married and have never had the joy of giving birth. Anyway, so far as finishing at the gym with a BG of 111, and then crashing down to 50 ... I will share my personal trick. Before getting on the elliptical trainer for 45 minutes, I ALWAYS eat a Hershey's bar with almonds. I also drop my basal rate by about 50%. This keeps my BG elevated enough while exercising, and prevents the plummeting later on.

Thank you for always being so honest, I mean it.

((Hugs))

Right behind you on that one Kerri. I was at Children's Boston this afternoon too to see my Diabetes Educator.

LOVE this!!! I have repeated this same rant and rave in the past. Could not have said it better myself.

A little harsh today for the blog I would say. Lets remember the positives in our life and those others that we reward by all of this work.

You literally took the words right out of my head. This is exactly what my husband is going through at this very moment. Thanks for being brave and sharing it with the blogosphere.

As many have said, I feel your pain and frustration. It's not fair and it's ok to feel that way and express it. I hope next time goes better for you. :)

I actually feel better myself just reading this. Kind of like, 'Phew, now I don't have to write my OWN tirade. Thanks :)

Wow....look at all these comments!! All of these people who understand how you (and I) feel. I have also worked my butt off to drop my AIc down from 8.something but my last AIc of 7.6 wasn't very satisfying. I completely and totally relate. Thank you for -writing this, Kerri.

Kick its ass Kerri!!! I am sure you have many friends that will hold it down for you while you get in a few good wacks :)

Ditto! Thank you for saying this!!! I love that you create curse words to insult D. That is brilliant. :)

Amen, sister!!! And while you're at it, kick it a couple times for me. The Beetus is a HUGE biotch!!

And I agree with your endo, that's a number you can be proud of Kerri. I know it doesn't feel like it, but you're really doing a fabulous job.

yes. just yes. my a1c did not drop AT ALL at my last appointment. it's sure as hell better be lower next time...

hang in there, kerri. you can do this! :)

At least you didn't have to live 25 years before you could check your BG ten times a day. Try that for fun.

diabetes solution by dr. bernstein,great read

Very well said...per your usual skillful way. even though the day was "bad", see how nice you've made the resulting days for others by capturing what they/we feel yet sometimes can't express?

Well done. Well done. :)

I'm a new reader of your blog, and a mother to 11 yr old T1 daughter. For 6 1/2 years I've refered to the A1c as the "mommy grade" and have never acheived the "A" of being under 7%...always between 8.8%-7.6%. Unfortunately, all of the emotion you expressed in this post is felt by so many of us affected by "D". However, it's reasuring to know that I'm not alone. Somehow I think that if it were MY "D", I could have better control of it, but you've enlightened me...I'd probably be worse at it. You've done great, and I can only hope my daughter is as good as you when she's on her own!

Thanks for posting. I felt the same way when my last a1C came back at 7.9%.. wtf, I'm wearing CGMS and testing 8+ times per day, correcting every single high, changing my basals on practically a daily basis. Why can the number not just reflect that?

I'm still trying to kick D's ass too.

Thanks, Kerri! I needed that. Exactly how I felt last night when I woke up for my nightly...er...early morning check and my # was 43! i felt horrible and mad and cried for about an hour until I stopped feeling sick. Thank goodness for those yummy glucose tabs...watermelon flavor.

"And I will kick your ass." That last line is basicly how I live my life. I have had type 1 for almost 39 yrs. There was an incident many years ago where this disease almost took me out. From that day forward I vowed that this disease will never get the best of me. I figure I am in the 10th round of a 15 round fight with this disease. I had a few standing 8 counts in the early years but now I know there is no way I'll let this disease win. I know something will take me out some day but i guarantee you it won't be anything diabetes related. 39 yrs, no complications and still kicking ass. Diabetes will not defeat me.

It was nice to read this post and all of the comments. We had an appt with my four year old daughter's endo on Monday and her A1C was the highest its been since a month after diagnosis a year and a half ago. I wanted to cry. My husband and I kill ourselves and have not slept through the night in the past 19 months but it never seems good enough. Thanks for your post. Its nice to know others are killing themselves and getting the same results. That's the nature of the beast I am finding out :-(

I LOVE it. I love it, because I'm going the same thing right now. Except, your A1c went downward. Mine is inching up on me. GRRRRRRRR! Happy freaking D-nniversary to me. :( (yesterday... 31 years)

Great post Kerri. I SO hear you.

Yes it SUCKS BAD!!!! So I feel like screw it..... then I look at my 5 yo daughter and my 14 yo son and I know I have to keep trying.

No insurance....

$135 = 1 bottle of humalog that lasts 10 days

$650 = 4 boxes of 10 infusion sets and 4 boxes of 10 reservoirs

$50 = 2 bottles of 25 test strips that lasts about 8 days depending on how often I test.

$8.00 an hour = how much I make at my part time job.

Ya the math dont equal====== so I run out of insulin and end up in I.C.U too often. and I just want this to all go away....

Thank you so much for writing this! I have felt this way many, many times. You will get through it! Recently I majorly upped my diabetes efforts and my A1C went down a whopping .1%. Whoopee. My endo told me to be patient - that I hadn't given it enough time to come down. I was upset, but it turned out she was right...at my next appointment I was down almost a whole point. Which is no small deal - and which you've already managed to do!

From the first sentence to the last, I thoroughly enjoyed and sympathized. Good on you for not letting diabetes get you down and for facing it head on!

Hi Kerri - I haven't touched base in a while. Reading your blog is like looking in a mirror. We just got back from a wonderful vacation. Busch Gardens and then a five day cruise and then two days of relaxation and golf with my wife's cousin. I ran every day but the day I golfed. My last A1C was 8 even though I run 4 to 5 days a week. On my cruise I only gained 2 pounds. Yes, my numbers were high most of the time. I guess they would have been a lot worse if I hadn't worked out. I think that diabetes "sux" too. But we have to continue the battle. At least some days you feel like you win or tread water and some days you don't.
Going through airport security comes with a little extra fun these days. I get to be body scanned because I have that thing on my belt. Oh, I have to take off my belt, watch, shoes and the thing goes in my pocket. Sir, can you take that cell phone out of your pocket? Yes but it's uh my insulin pump? OK you can put it back in your pocket. Please step through the body scanner? OK. Come with me, Sir? OK. Can you take the thing out and rub your hands alll over it? OK. Please rub your hands on this paper Sir? OK. Sir, Our GC/Mass Spec Binford 3000 whatever it is says that you are OK to go. You don't have any explosive residue on your hands. Now I had to help my 20 year old son get his backpack back they kept rescanning it. Evidently he had a bottle of hand lotion in it. My 16 year old daughter was nervous because she had a pierced belly button and she thought they would either taken it she would get a personal body search. She's 16 who knows. She threw up before going in. Be prepared Kelli. Cell phones at 10 or 11 and then teenage girls want their belly buttons pierced. Oh yeah, this was 5:30 in the morning in Providence. We had a 6:30 AM flight. Finally we all get through. Four of the 5 of us had to be body scanned. Yes even my 16 year old. I guess they figured she was trying to throw up a weapon of destruction. I didn't see whether they checked the trash bin after she was done.
Bye for now. Keep on writing.

Thank you Kerri. Thank you for being honest and saying everything we all want to say. This disease is such a big part of our day to day life; know that you are not alone in your frustration. I am trying to get my A1C down so I can have a healthy baby and it's not easy. I hear you and feel liek your words could have been mine.

Kerri,
I absolutely LOVE the last two paragraphs of this post. My daughter Taylor (5yrs) has diabetes and those last two paragraphs sum up my feelings about this disease. It sucks, but we will not let it suck the life out of us. Hang in there and do the best that you can each day. Thanks for your posts. They help me envision who Taylor will be one day...

Hi Kerri,

It is soothing in a weird way to read your frustrations. I've been working all summer at Bearskin (YAY diabetes camp!!) and having the community of fellow diabetics to kvetch to really helps when diabetes sucks. But...we need to always keep it positive for the kids, and sometimes I forget how MUCH DIABETES SUCKS. Thank you for reminding us all that we're allowed to hate diabetes sometimes. That it's a crappy disease. And that also, it can empower us and make us better people, because it DOES NOT DEFINE US.

I have type one diabetes. I manage okay.. my a1c is around 7 or 8 most of the time.. it used to be 15 point something or other.. i hate diabetes.. i got type one at age 16.. i am now 20. it makes me feel better that you hate it too. its depressive.. extremely.. for already being an introvert, it just makes things worse and i feel more pressure.. im not overweight at all, not pressure that way.. but pressure that every time i check my bloodsugar it is never what i expect.. its so upsetting to feel sick.. to be sick on the inside and know it.. also what sickens me is the multiple, yes MULTIPULE, cures for diabetes, type one and two, that are not open to the public and not available at all for the most part. I want so badly to be healthy and feel good and not be tired all day.. even though i work out and eat very healthily, a lot of days i feel so worn down and tired and miserable. i want to feel better. i want to live more.. i try so hard at college as well, i am attending a prestigious work intensive school... and every day i work till late and i can barely sit up anymore.. and then i wonder how people without diabetes are doing? i feel like they would be just as tired.. just another thing on my back. i love everyone who understands. i need someone.

Hi Kerri

I totally understand you, it is so frustrating!!! I can't help feeling this way even though I know they are worse things in this world and people that can't walk or even breath, I hope they can find a cure soon.

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