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Looking Back: Change Just One Thing.

My plan was to recap the Diabetes Sisters conference today, but that plan was deftly derailed by a 3 am blood sugar in the 40's, and now I have to change all the sheets on my bed because they're covered in sweat and glucose tab dust.  (Sounds like a hot night, but wasn't.)  So, instead, I'm revisiting a post from October 2010 about the one thing I'd change regarding my diabetes. 

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This thing has the attention span of a ... 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 feeling 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

Other than making diabetes go away forever, I think the thing I would change (if I had the power) would be the cost to manage the disease. I feel like insurance companies should cover more at a lower cost for us. A pump and CGM should be an option for everyone with diabetes, not just those who are lucky enough to be able to afford the initial and ongoing costs.

I think you hit it spot on. I had a passed out, 911-calling, ambulance-driving, scary low a couple of years ago that caused both my husband and I to hesitate at the thought of sleeping. You are right that the Dexcom has helped, but the energy that my family extends worrying about my next nasty low is what irks me. That and blood sugar spikes for no discernable reason.

This is a great post and I can relate 100%. This disease is something I wish I could let go of, for myself and for my loved ones that deal with the negative aspect of my diabetes daily.

I wish it was me that 29th of August the one that got diagnosed and not my little daughter.... That's all...

My 5 year old son has T1 and I'm sure his answer would be different than mine...but if I were to answer for person who cares for a T1 - I'd say I'd change the lack of control the disease gives us. If he has to have it, I wish it could be more black and white and not so gray. I wish that I could do the same thing every time and always get the same results.

Amen sista. After my short 10 months, I'd return diabetes in a heart beat if I could. and I agree wholeheartedly that the emotional impact is by far the hardest part. I could do without the things that are stuck to my body 24/7 but the annoyance of that is nothing compared to the distress of a conversation I had with my boyfriend last night about a dream he had where I seized and he had to call 911. The crazy part is, I hadn't even told him about the possibility of a seizure. He didn't freak out but I can tell the thought of stabbing me with Glucagon is not first on his list of things to do. BUT at least he knows what he's signing up for :)

Press on, my friend! It was so great to meet you at the conference this weekend!

There’s a boardwalk path area at the beach near where I live that is shared by pedestrians, runners, bikes, and all things with wheels (some of them I suspect are Transformers in disguise!). As I was walking along it the other day I was passed by a runner who had an athletic prosthetic leg and then by someone in one of those racing wheelchairs. This happened near a memorial bench of a young woman who used to run along that path and who had recently died of cancer. That day, more than any other, I was reminded of the fact that everyone has problems…not just me. If I could change anything about my life with diabetes it would be to not have attended my countless pity parties of one. Diabetes is an insidious disease, but I am controlling it and I am alive. I need to remind myself of that every day.

I'd change the molecular structure of food so that pasta, pizza, cake & ice cream were all free and veggies were loaded with carbs.

I don't have an answer either. But I like yours.

I was diagnosed with T1 at 38 years old, and I think you're spot on with what you said about how it's different when you're diagnosed as an adult. I don't want to downplay how annoying diabetes can be, but for all of you who were diagnosed as children and who can't remember what life was like pre-diabetes, I want to say it's really not THAT different. It can be annoying and you have to stay on top of it, but if I'm honest with myself, the actual lifestyle changes I've had to make are minor. Maybe 5% different than before, and many of those changes (eat healthier/exercise more/etc) were things I was trying to do anyway. I'm not a different person post-T1 than I was pre-T1. Would I rather not have it? You bet. But my life really is not all that different with it, and there are about a gazillion other diseases and conditions I see people struggling with that I think would be a whole lot harder.

I'd lessen the grip it has on me. I was diagnosed at 18 (I'm 20 years old now), so I have the before-memories. In the 2 years I've had t1, I know it has partially taken away the free-spirited-ness life can have. I played sports year-round from first grade through high school graduation (where I was then dxed two weeks later) and those are some of the greatest memories I have. Now when I play sports, all I can think about is where is my blood sugar at, is my pump going to get knocked off my waist while I'm playing, is my pump site going to be pushed up against and come off off, etc.... I can't just let go when I play sports anymore and just simply enjoy them. That inability to just let go translates to things far beyond sports, too.

I was diagnosed at age 25. There’s something weird that happens to me every once in a while when diabetes slips into my pre-diagnosis memories. Once, I was trying to remember, “Where did I hide my pump under my wedding dress?” then remembering that I wasn’t diagnosed until after I had been married for over a year. I had 9,148 days without diabetes. Did I squander those days? Did I appreciate what I had when I had it? Why now does diabetes leak into my memories? Every day it robs me of some of my most intimate moments, why then must it rob me of my past too?

that's a really hard question
but, I guess I really hate having to put everything on "stop" to treat the low lows

One Worry: As you age with Diabetes - You worry about Staying ALIVE!... as the management of Diabetes becomes harder, and harder!! Type One 'D' Kills 5% plus .... so, Diabetic "Dead In Bed Syndrome" is something I - and everyone who knows Me Worries about... and for justified Reasons....I'd change this Worry - so I could sleep at night.

Thank you so very much for coming into my "life" shortly after being diagnosed T1D LADA at 39. You have been such an inspiration... And that is definitely one thing I would not change!

I was 35 when I was diagnosed in Feb 2012. The biggest thing that I would change is the mental aspect of it. I would also increase the amount people know about the disease. I have been shocked by the lack of knowledge even in some of the healthcare professionals I have had to deal with. I have an uncle that has been type 1 my whole life so I had a good basic knowledge of the medical side of things when the dr leaned over and said "how long have you been diabetic" as I lay in the hospital in DKA about to go to ICU. I was in no way prepared for the mental adjustment that my family and I would have to go through over the next few months. I can do the math and count the carbs but sometimes when the numbers don't work like the books say they should it really gets to me. I have a new found respect for all the folks out there that have had to deal with this since a much younger age than I have. I had never read a blog until I found yours but I check it several times a day now to see if there is something new. It really helps to read your posts And the comments that echo my experiences and feelings.

Not having those extreme lows that make the left side of my body non-functional and then screws me over for work or whatever I need to day that day. Not having the extreme highs that give me unbelievable headaches. Not worrying about not waking up in time to catch a low, and wondering if somehow I'll be in a coma or dead before anyone notices. All of it, scary. And like you, I don't remember anything "before" diabetes. I was diagnosed at 3 years old, so my memory has always been "stick finger, give shot".

For me I’m on year 4 of living with T-1 and in a very real way it saved my life. I was not on a very good path prior to diagnoses. What I would change? Having recent memories pre diagnoses I know that I knew nothing about the disease. What I did know wasn’t informed just opinion. An opinion I am ashamed of today but one I’m afraid a lot of the uninformed has. I would change how the disease was named. Have it named in a way that didn’t indicate to the uninformed degrees of severity or decline. One of the most impactful comments came from my father-n-law. He is T-2 and does a very good job of management reducing his meds almost completely. He said to me “if you would have managed it properly like me you would have never made it to the T-1 stage. He is informed now…lol

As the mother of a 9-year-old T1D daughter (diagnosed just a little over a year ago), I wholeheartedly agree with you about the worry part. Being a natural worrier to begin with, T1D has given me such a wide range of topics to almost-incessantly worry about. There are no corners in my brain that offer safe "sanctuary" from the worry. I even have T1D nightmares sometimes... Maybe I'm still a newbie, and that I will get better at managing my thoughts, but I would like a vacation from the worry. Just a rest from it for a little while. It is relentless.

I think I would take away the idea that if I get complications, or even admit that I could get them, then I have failed.

I would probably be a lot worse off now if I hadn't been trying. So how about talking about the complications that I don't have/ won't get.

What would I change? Being a recently diagnosed type 1, i would have wanted to get diabetes earlier in life. Obviously i wish i didnt get it at all, but if i were to get it i wish i got it sooner. Mainly because, as you said, there is a 'before' part. And frankly it would be a lot easier if i never experienced a life 'before' diabetes. All the 'junk' that i used to eat and drink will always be in the back of my mind.

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