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Change Just One Thing.

If diabetes were a goldfish, I'd flush that little sucker.Recently, I was asked to answer a few questions for a company that was looking to better understand people with diabetes.  I expected a list of questions ranging from "What color meter do you prefer?" to "List all medications you are taking to treat your diabetes, and why." 

Instead, the questions were more touchy-feely than I had anticipated.  And a few of them were hard to answer.  The one I struggled most with was "If you could change one thing about living with diabetes, what would it be?"

My first response was to shrug.  "Everything?  I'd change everything?" 

Then I regrouped a bit.  But still, an answer wasn't jumping into my head as easily as it had for the prior questions.  Somehow, "What or who serves as your motivation or inspiration?" was much easier.  

I'm only guessing, but I think if diabetes comes into your life when you are older, there's a distinct "before" and "after" to your life timeline.  You remember when insulin injections or pumps or glucose meters weren't part of the equation.  You know what it's like to drink juice purely for pleasure.  You have a sense of what you're missing, of what's changed.  I'd imagine that concept makes a diagnosis both easier and infinitely harder, on so many levels.

Diagnosed as a kid, I don't have many pre-diabetes memories at all.  I'm not feel sorry for myself, but it's just a fact.  I don't remember life without any of this medical stuff, and there is no "before."  Just "after."  Only the after part isn't this big dramatic change - it's just "life."

So when asked what I'd change about living with diabetes, I don't have enough life without it to lay claim to a quality answer. I don't give a lot of thought to the meters or the pumps or all the physical trappings of diabetes.  I don't mind because I don't know any differently. 

But I wish I could lessen the emotional impact of diabetes on my life, and on the lives of the people I love.  I wish diabetes wasn't such a fickle mess, and that my mother could safely assume that I'll wake up just fine every morning.  And that my husband wouldn't view the Dexcom as his safety net when he travels without me.  And that I wouldn't have seeds of concern when I'm alone with my daughter.  I wish this stupid disease didn't come with so much worry, and I really would love to change how that worry bleeds into the lives of my loved ones.

If I could tie diabetes to a balloon and let it soar out of my life, I totally would.  If I could flush it down the toilet like a goldfish, I'd do that, too.  I'd let a bear maul it.  I'd allow my diabetes to stick a fork into a plugged in toaster.  And if I had the opportunity to shove it in a microwave like a Peep at Easter, I'd do it in a second.  I'm not a fan of this disease, especially when it makes people worry. 

So I guess my first response was sort of right.  "I'd change everything." ... only I'd add balloons, microwaves, and bears.  ;)

If you could change one thing about your life with diabetes, what would it be?

Comments

Call me unoriginal, but I like your answer.

"I'd allow my diabetes to stick a fork into a plugged in toaster."

that's just classic. For us it's also the worry. As any parent will say, we'd take this diabetes away in a minute. But why I'd take it away, I don't want my son to worry. I see it already starting. He worries about what his friends thing. He worries when I have to leave him with someone. He worries that he's eating the right thing. He worries that he's doing the right thing. All this and I'm still 100% involved. I can't imagine the worry when he's more on his own.

so the worry part. That's the part I'd get rid of. If diabetes could be a disease free of worry - like maybe if it was like wearing glasses, I put my glasses on because my eyes are busted but then I go about my day never giving it another though. That's what I'd take. The worry.

No before for me either. That type of question always gets "everything." Or a sarcastic "functioning pancreas would be nice."

But since it's related to the disease itself, I'd change the emotional part too. It's the part I hate the most, the part that does the worst damage, imho.

Oh Kerri, you don't know how much your words touched me, as a momma to a gal who was dx'd at age 6, who I imagine when she is all grown up, like you, she will have no memory of a life 'before' diabetes. I will hold those memories for her and tell her about them, cause she needs to know there WAS a time before all this.

If I could change one thing, it would be the worry that it causes my daughter and making her old before her time. She is already old in so many ways for an 8 year old and it sometimes makes me so very sad.

I'd want the "responsibility" taken away. The "well your A1C is high again, what did YOU do wrong?".

I'd definitely change the unpredictability of it. Would be so nice to know that if I ate 40g of carbs and bolused for 40g of carbs, my bg would stay stable instead of doing whatever the f it wants for no conceivable reason.

And to know that if I went to bed with a bg of 90, I wouldn't wake up at 3AM, as I did last night, with a bg of 45. (And that the Dexcom would catch me before I got to 45, instead of flashing a cheery "Congrats you're 76 and holding steady!" line.) In other words, I wish diabetes was a predictable computer program, when it's actually like the alpha version with too many weird-ass unfixable bugs.

I agree that it would be great to remove the worry that comes with diabetes, both from ourselves and our loved ones.

I'd also make sure it comes with an instruction manual. I'm a guy, so I probably wouldn't read it, but instructions that make diabetes more predictable would be useful for a lot of people.

The fear/worry that you've done everything "right" with regards to eating or exercise, and you still may end up either high or low.

at this stage i would love to change the attention diabetes demands. for my daughter who is coming of age and is aware of other people's interest when we check bg or we tell the pump her carbs, etc... she is becoming aware of the attention diabetes attracts and she is not loving it. your attention please, take it away (maybe we can tie it onto your balloons of worry.)

As the mom of a 7 year old daughter (dx'd at 2 years old) I'd have to agree with you....I'd change everything (and add in some ballons, bears, and microwaves lol). But seriously, I agree with you and I worry that my little girl already feels the same. She does not remember a "before" and I already see her growing annoyed and bitter about it, especially when she sees her little sister living life without the same interruptions and complications. It saddens me like nothing I could have ever imagine and I wish I could just take it all away. So yes, I'd change everything about it for her! No needles, no insulin, no carb counting, and especially NO WORRY!!!

the one thing i would change for my 9 yr old son who has diabetes... i would like if i could take it away from him and give it to myself.. i would love for him to be more carefree and not have to manage this disease.. i would take it for myself in a heartbeat if that meant he would be free.

I'd trade being woken in the night by my Dexcom or pump in a heartbeat. My guess, I get woken at least 4 nights each week.

You know Kerri, I never thought about you being the PWD and the worry that you must carry when alone with your child. This was very insightful to me - Thank You. I knew bearing children is a rigorous roller-coaster ride of trying to manage blood glucoses etc...but, I guess, I never really thought about the day in and out of just you managing "d" on top of motherhood...and most likely the worry of a low or something while caring for BSparl.

I like the visual of the PeeP in the microwave btw...very descriptive!

So many things I'd love to change! But I think above all, I would change just how much THINKING is required for everyday activities. How when food comes at a restaurant I could just start eating. Instead, it's test, write that number down, do some quick carb counting, write that down, bolus, write that down, and then eat when everyone else is already halfway done.

I have 26 years of before to remember. I also remember what it was like to have diabetes before my diagnosis. I was SO tired, scared of my random vomiting, why I lost all that weight, etc. In some ways I'm grateful for diabetes because I am healthier now than I've ever been (so ironic!) and I'm so much less exhausted than the year leading up to my diagnosis.

I was one of those that had a "before" life, and I can honestly say that I wish I could take away the constant thinking.

I'm always thinking about what my BG is, do I have enough insulin in my pump, how many carbs is this, where are my glucose tabs? I swear, I wish I could just mute my own brain sometimes because I'm constantly thinking about and planning my day around diabetes.

Life with diabetes is like a dynamic, dramatic movie, but sometimes I wish it were a silent movie.

Ha! I think Jasmine and I were looking at each other's papers when we wrote our answers! LOL! =D

Boo to thinking!

Holly - LOL! No cheating. ;)

Michelle - My mother has said the same thing to me. And now that I have a baby girl of my own, I completely understand.

I'm with you and so many others that I don't have a "before" to remember. It would be SO great since we have to live with this disease, if only there weren't so many variables that played a part in our bg readings. Basal rates = good bg and dosing appropriate boluses = good bg. No more of the eating the same thing for breakfast or lunch every day for 6 days straight and getting 6 different postprandial readings! It would be so nice that if we did things right, our bg would be a result of that.

Reading your post, and seeing the memorial teams at the JDRF walk this Sunday, "worry" and "unpredictability" seem like the two nostrils of that ketone-breathing dragon that's always trickling smoke at the neck of T1s.

For T2, I'd change both the delay before diagnosis (bg and A1c should be standard annual-physical blood tests at all weights and ages) and the cost of treatment relative to the average low-income elderly and/or racial-minority person diagnosed with T2 (in short, the folk who suffer the most complications, because they are the least treated and monitored).

Then again, we are talking about two (or more) distinct diseases with one common symptom: persistent hyperglycemia. Until we can isolate and treat the causes, everything's just hopefully-palliative commentary.

Like you, there really is not much of "before" diabetes in the equation for me. When kids are diagnosed (as I was dx'd at age 7) the memories of life before aren't something we really dwell on because they are such a small part of the bigger picture. But for me, the lack of absolutes is the one thing about diabetes I absolutely WOULD change. This is why 1+2 does not always equal 3 with this disease; sometimes 1+2=3, but almost as often, it = 5, or 0.39, or 4, or 0.75 or countless others. There is so much imprecision and fuzzy logic involved that it really makes things things frustrating. We do our best with tools that have been likened to starting a fire with 2 sticks; it can be done, but it's nowhere near as easy as using a match or lighter would be!

Stacey - That keeps coming up over and over again in these comments, that whole concept of consistency. I agree - doing the same thing and getting completely different outcomes on any given day is FRUSTRATING as fern. ;) But seriously, it is. I can't stand the variables.

This brought tears to my eyes! Lily was diagnosed at 3 and I know she won't remember life before...doesn't now even. But she hates everything about diabetes. I would gladly take it from her...

I had a before to think back to and it all boils down to worry. I wish I could remove that element but can't string words together in a coherent way today, so I'm gonna agree with EXACTLY what Elizabeth wrote. She did it better than I would anyway.

I would love if diabetes didn't make it so hard to do shift work.. different schedules and mealtimes each day are not conducive to good bg's! Also, I find it hard to do proper exercise, as I always seem to go low, which means getting juice and getting all of those calories back!

WORRY!! Yes!! Besides doing away with it all I could do without the worry. I have a 10 year old boy who was diagnosed at 8. I really can't even believe 2 years has flown by so fast. It still feels new at times and yet oddly old at others. I HATE that he can't even just run outside to play with friends without me yelling out "did you check yourself? Do you have your backpack?" Then every 30 mins or so "Do you feel ok? You should check yourself!!" I do feel kids with T1D lose a lot of childhood at least a carefree childhood! He definately knows he has to be on top of his bs in anything he is doing. In many ways I am not looking forward to the teen years. He will want independence and I can't always give it to him because it is a matter of life and death! The whole thing SUCKS!!!!

I would definitley say the thinking/worrying. I think they go hand in hand. I'm constantly thinking about diabetes but at the same time worrying (worrying I don't have enough fast acting carbs in my purse, worrying I'll run out test strips before I can refill, etc.). Also, like you mentioned the constant worry of my family and friends. I do remember before D since I was diagnosed at age 18 and it was so carefree, only I didn't appreciate it beause I was a stupid teenager and everything is so "dramatic and difficult" when you are a teenager. :)

Along with the inconsistency and the constant thinking mentioned in prior posts, I'd wish money was a non-issue. I wish I didn't have to look at my stash of supplies and equate them with how long I have to live. Without insurance, this is a key issue and one that causes a lot of worry that healthy people just don't get. My husband and I have had to move in with family members (in separate locations) just so we can save the rent we'd normally be paying against the cost of my diabetes supplies. Just so I can live, I have to live without the person I love the most.

Your part about the being diagnosed older and having a before and after is so true. I was diagnosed at 28 with T1, and there are so many times I have thought about "before." Before seems foreign to me now because it is hard for me to remember what it was like to just go and grab a snack and whatever I preferred for a drink without needing to check my blood sugar, count the carbs, and bolus. In any case, you are right, the worry needs to disappear. I was a worrier before and am much more so now...thanks diabetes, I appreciate it :)

Wow - that's a tough question. I'm much like you Kerri - having lived with it most of my life - I don't know the BEFORE life with the D (well - maybe trotting off with my brother to the Tuck Shop for a Pixie stick ).
If you are hearing crickets in the background as you read this - I'm having a tough time coming up with an answer - and have to admit at this point in my life - I wouldn't change anything - diabetes is me - and personally I think it's made me a better person overall \\^^//

I wasn't diagnosed with T1 until I was 30. I have MANY memories of life without this disease. It sucks because I never thought about carbs and now that's all I think about. I have two small girls and I do worry about when I alone with them. I check my sugar ALOT because of it. I would absolutely wish this disease away. My life was SO much easier without it. :(

I, too, would like the Diabetes Half of my brain back. Sometimes I wonder: if we really do find a cure in my lifetime, WHAT AM I GOING TO DO WITH ALL OF THAT FREE TIME?? Seriously, I have no idea. I'll need about 407 new hobbies and interests to take up the newly-found brain space.

I have followed your blog for a while but never commented. Today I can't help myself. The entire paragraph about worry... It moved me to tears. My husband is Type I and I travel for work a lot. While I'm able to subdue the worry and almost forget it's there, I really can't completely forget it. Due to issues with his thyroid he has been having trouble with his basal rates and has woken up severely low several times lately, including one with seizures (thankfully, it is the only time he has seized since we've been together). It made last week's business trip especially difficult and worrisome. Fortunately, he was just fine and had no episodes while I was gone. Our dogs are incredible about stepping up and waking him in the middle of the night when they sense he's getting really low. They won't leave him alone until he pulls out the tester :).

Thanks for letting me vent/relate. I guess I really needed it :). Your blog has really helped me on this journey with Husband.

I would absolutely banish the worry it brings. To me and those I love.

That's a stellar answer.

Of course, if the worry were banished, most things about this disease would be different, you know?

Diabetes without worry would make it so my mom doesn't feel the need to call me into the night when I'm away at a work conference or alone at home. It'd make it so my brother didn't worry so much when I take his son out with me for the afternoon. I'd be able to sleep at night without fear.

I think that's an answer many of us would give. Whether we've lived with it a minute or for years.

Cannot wait for lunch tomorrow! :)

I would make it legal for diabetics to slap the diabetes police in the face, twice. :)

Yeah, I agree, I'd stick it in the microwave too.

But if I had to answer, what would I most want to change about the disease? The inconsistency and all the gaming that requires. If a consistent, prescribed treatment plan actually worked, our brains would be at liberty to do lots of other things and play lots of other games. We'd be brilliant....

I'd take math out of my life. Not dividing carbs by insulin rations. Correction factors, etc.

Without math, this whole diabetes thing would be easier.

One single thing? The method of testing - those damned awful lancet devices! They can send people into outer space but they can't figure out a painless method of testing?

I'd take away the 'unknown' of diabetes. I know my Mom & Dad worry about me (...and i'm all grown up!) because they just don't know! I mean sure, Mom was in the hospital with me at the time... 30 years ago! Poor Dad... not a clue! He was a worried mess when I was pregnant, and I tried to keep him 'in the loop' and let him know everything was ok. So... maybe I'd change everyone's knowledge of diabetes. We're not going to go blind or loose a limb if we eat a cupcake or a cookie. We know what we're doing, and 'Yes, we can eat that!'. We are not a 'bad diabetic' (ARGH!!!)

As the mom of a 10 year old who was diagnosed at age 7, I would like a written guarantee - that would be my request. A guarantee that all the testing and pump adjusting, the middle of the night lows and snacks, the worry and food deprivation, the doctor visits, the sacrificing of personal privacy, the feeling different...well, that it's all going to work. That my daughter will grow up healthy, happy and complication free. I'd like it in writing.

Like you said, I've had this thing so long, I don't remember a "before." For me, it's not the pump or the shots or the testing or the carb counting that is maddening. I'm used to all that by now.

What I would love to change about diabetes is that I do all that stuff and sometimes my blood sugars are still crap! I wish diabetes were a simple If-Then equation. IF I'm totally compliant and do what I'm supposed to do THEN I will be healthy and my sugars will be perfect. The end.

Can someone help me with that?

My answers weren't any better, as another PWD diagnosed young who doesn't have that before & after mark. My initial thought was: If I could change one thing about "my" diabetes, I'd make it so my cat was the one responsible for it all... But then I realized that my death would quickly follow, so I regrouped and rethought the answer. Going all boring answery, I went with weird cost and health care reform... Shoulda gone with the "fork in a toaster" response - so awesome!

This was great food for thought and I turned it into my blogpost for today! http://fionaleavitt.blogspot.com/2010/10/one-thing-i-would-change-about-diabetes.html

Thanks for the inspiration!

I definitely have the before and after mark, but still, even after much consideration, I'd just change the fact that pancreas' can break and cause this in the first place.

What I would change? I also don’t know the before. I do know that the greatest things in my life have come from having diabetes (friends, camp, jobs). I think the thing I would like is a name change. I realize that all types of diabetes revolve around insulin, but if type 1 and type 2 diabetes had completely different names, then maybe there wouldn’t be so many misconceptions?

So many things I would want to change but my biggest issues with the big D are the unpredictablility of it all (completely agree with the comment on eating 40 carbs, bolusing for 40 carbs and the after meal BG not being the same every time). The other thing is the constant voice in the back of my head that keeps saying "Is this the high blood sugar that is going to destroy my kidneys or cause blindness?" I wish I knew that I would have a healthy future - or at least be able to stop secretly blaming myself for every bad number that comes my way (especially the ones that I really had no control over).

Dx'd at 23-I really did have a before. Went touring in Europe for 4 months with a backpack and no cares and came back and 2 weeks later-full life responsibility and worry hit. Thank goodness I went touring when I did...I thank God I had a really "carefree" childhood, teenage years and young adulthood without this disease. This disease is an amazing burden-there is no other way to put it.

I do remember life before Diabetes, as I was diagnosed at 23. If I could change just one thing, aside from a working pancreas, I'd like the predictability to be there. Others said the same thing, but I'd love to know what is going to happen, and have it happen that way all of the time!

It has been an emotional day, so I am not surprised that I am tearing up over this post.

As a mom, I would have to change the fear Justin carries inside. His fear that he will "loose his legs" or "not wake up". It breaks my hear to know that he thinks about things that a 9 year old should not think about.

Thanks for sharing.

If I could change just one thing, I'd be selfish, and make my son NOT be one of the people who have it.

I do have a before and after. Yet at the same time, I've just about crossed the line of more time "after" than before, and can't fathom my life without it. A teenager's life is entirely different than a 30 something with two small boys.

When I first read this, I was trying very hard to come up with the words to describe what I wanted taken away. I knew it by feeling, but not by words. Then I read the "inconsistency" and "unpredictable" comments. That is what I want taken away if I could just choose one aspect (not including, my beta cells don't work).

you know, that question may actually worse than the one about how you felt when you were diagnosed

If I follow the diabetic rules of the road, I want good results everytime, not this hit and miss crapola. carb count, bolus, same results each time, the end.

I'd want more better mental health care, and not just intervention services, but preventive care... for us AND our families.

I know, I'm predictable, but I'm OK with that. When you live with diabetes, predictability is actually kind of nice.

It is such a difficult question. I can't stick with one answer. But like others who live with this day after day, concerns about future problems, not wanting my family to have to deal with me and my health issues, costs of diabetic supplies, and pump and CGM's when I retire are always there. Will I be able to see my grandchildren? What and when will my complications be?? I wish I could change how much I worry about all of the above. But I can't so I just keep on going, and try to stay on top of everything. Come on cure!! Please hurry!

The worry, the second guessing that I constantly do, all the diabetes dialog that is always going around in my head, all the time. Gawd, it is a constant, even now while I type this, I'm thinking about it. However you wish to word it, it all boils down to "worry". Oh hell, I gotta go test!!!!!!!!!!!!

I was diagnosed 38 years ago, at age 16. Though I know there was a "before," I can only remember it by looking at photos and home movies my Dad took of me before the big D hit. I do not remember what it must truly have been like to life life spontaneously.

I was about to say that I would like to change Type I diabetes so that it would require less effort, but of course it already requires less effort than it did when I was first diagnosed. In those days we tested our urine for glucose, and no pumps were even available.

Yesterday I was sitting in a doctor's office and happened to pick up a copy of U.S. News and World Report. They have an article about kids with Cystic Fibrosis, some of whom develop Type I diabetes directly related to the cystic fibrosis. If any of us thinks WE have a difficult life, we will think twice after reading what life is like for a kid with Cystic Fibrosis and Type I diabetes. I suddenly realized how lucky I am to ONLY have Type I!

As a mom, yup...worry is absolutely the factor I'd eliminate, but for a different perspective, I asked my 8 y.o. daughter. Her instant answer was that she'd want a way to deliver insulin without the sharp prick of inserting a new infusion set. And the lancets could go too. She'd let me keep worrying for now!

I'd make it stand still so I didn't have to chase it around so dang much!

Kerri--you're so inspiring & I thoroughly enjoy reading your blogs on a daily basis. If I could change one thing about having diabetes--it'd be that I could eat anything I want, as much as I want without those nasty highs hours later! Thanks for the inspiration!

COMPLICATIONS

My body has (and is- betraying me)& I'm NOT HAPPY. I have had Type I for only 27 years too :(

Also, people need to be more ACCEPTING to TYPE ONES for whatever situation they are living IN and WITH. It's such a shade of GREY that others cannot dwell about or judge on this subject!!!

If I could change one thing, it would be the blame and guilt - which I'm counting as one because they go hand in hand. For T2s who get blamed for having diabetes and are sometimes made to feel guilty about it. And for T1s and T2s who get blamed for highs and lows and everything else diabetes throws at us - "Your blood sugar is 387, what did you eat that you shouldn't have?". I despise the guilt we can feel as a result of this.

I would also take away the guilt for my daughter, diagnosed last year at age 6. The guilt that she feels that she did something wrong when her bg is off, the guilt she feels when she eats a heavy carb meal and needs a bigger bolus than usual, and the guilt that she was for some reason responsible for her older sister now being pre-diabetic. How do you explain to a 7 year old that diabetes isn't contagious when her older sister also gets is?

What a great post Kerri. I love the "fickle mess" line.

I totally agree with everything that everyone has said, but would add something. I would change the high maintenance of carb counting and diet management.

If I could just do something else besides micromanage the food I eat, I would do it. If that meant 100 pushups each day, or running 4 miles, or biking 40, I would do it. Whatever it took. Counting carbs is so high maintenance.

Hi, Kerri, we haven't talked in a while, but this is a question I couldn't resist.

I agree with you and many comments, but one thing I'd have to say is that if I could change just one thing, it would be the uncertainty of the insurance industry. The uncertainty of diabetes is challenging enough, but to live with our dysfunctional system for care gets to me even more. I can handle that random and unfair things happen in our biology, but that they happen in our society makes me frustrated and sad.

Getting adequate life insurance and things like long-term care insurance is impossible. I get tired of living with fear for my future, not even based on my health but based on money issues. I get tired of the discrimination and the institutionalized cruelty.

Hi, Kerri, we haven't talked in a while, but this is a question I couldn't resist.

I agree with you and many comments, but one thing I'd have to say is that if I could change just one thing, it would be the uncertainty of the insurance industry. The uncertainty of diabetes is challenging enough, but to live with our dysfunctional system for care gets to me even more. I can handle that random and unfair things happen in our biology, but that they happen in our society makes me frustrated and sad.

Getting adequate life insurance and things like long-term care insurance is impossible. I get tired of living with fear for my future, not even based on my health but based on money issues. I get tired of the discrimination and the institutionalized cruelty.

I was diagnosed at 23 so there is a definite before & after for me. Although I have no real memories of being "well". My health has been messed up for as long as I can remember in one way or another. Having said all that, the one thing I'd change is the same thing you would. That momentary flash of worry & fear on a loved one's face when I tell them I'm low or high or whatever is going wrong that day with my diabetes, drops my heart right down into my stomach like a rock. I hate that they are scared for me, worry about me, and know one day they will have to live without me far sooner than they'd like. I HATE being a burden on them. I would double my number of shots every day & give up anything pumpkin flavored for the rest of my life if I could save just one of them the pain of worrying about me.

And I need to go find a tissue so I'll stop rambling now. But one last thought. The Beetus inhales vociferously! It truly is THE SUCK!

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