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Posts tagged ‘life with diabetes’

Murraybetes.

Mornings start with graph checks and then we’re off to live
Not all D things are solid, but we continue, we forgive.
Lots to tackle, lots to manage, lots to do in this narration
Though efforts might end up a little bit Lost in Translation

Details of the day go by in a flurry
But I’m blocking all the chaos like Rushmore Bill Murray.
One thing stays the same, one thing’s on repeat
I’m always checking numbers to see how much I’m sweet.

It’s a cycle that I’m stuck in, like it’s always Groundhog Day
With the checking and the poking and the insulin melee.
“I’ve got you, babe,” says my panc and it’s right, it’s our kinship.
So I stick to the D program, pseudo-panc right on my hip.

Tracking lows that feel like pranks, man.
All the juice that I just drank, man.
And the rebound after I tank, man?
I bust those highs like Peter Venkman.

Searching for the perfect mix of things that bounce my BGs
But that mix it changes daily; that’s the trick of diabetes.
Pre-diagnosis numbers? How I miss you.
But I’ll keep working, searching like Steve Zissou.

It’s a circle of the weirdest kind but no rest for the weary.
The repetitive cycle of this stuff can feel a little dreary.
But why bother? Why continue? Why give this constant f*ck?
Because we’re worth it. Our lives matter.
And I’m guessing dead would suck.

Do You Hate Diabetes?

I asked some friends on Facebook if they hated diabetes, and the answers* were as varied as the folks responding:

  • “I hate it, the hassle, and the complications but I do not hate the growth amd strength I’ve achieved or the family I’ve gained because of it.”
  • “I don’t hate it as a thing but it does annoy me. At the same time I am very thankful that if I must have a problem of this type at least there are good doctors and advancing technology to help me live a normalish life.”
  • “I didn’t used to hate it when I was younger-I think because I had camp. But at this point, to be honest, I do tend to hate it.”
  • “Do I hate diabetes in general? Yes probably … I hate that it causes so much pain and suffering all over the world. I hate that people die from it and that companies exploit us living with it to make crazy profits. But do I hate living with it? Yes I dislike it very much.. and at times in rage I would say hate. But diabetes has opened so many doors for me and taught me a great appreciation for life. It’s easy for me to say that however within my environment. So who am I to judge anyone for saying that they hate it!”
  • “I don’t hate it, but it makes me tired and exasperated too often.”
  • “I don’t hate it. When I think about the ailments some of my other friends/acquaintances have, I am thankful this one isn’t a death sentence.”
  • “It’s a love/hate relationship. I wish none of us had it, or had to deal with the daily demands of it, and all the bullshit that comes with it. That’s the part I hate about it. But without it, I wouldn’t have met many of the people that make all the difference in my world, what I’m going back to school for wouldn’t be as clear, and my profession wouldn’t be as meaningful to me and (hopefully) others. I might not have as much empathy for others if I hadn’t lived my whole life with diabetes. Diabetes keeps me from being an asshole. Mostly.”
  • “I don’t hate it. Hate stirs up sadness, anger and emotions of feeling trapped. Hard to work with it if I hate it. But I wish to the depths of my core that I didn’t have to face it every day; every minute. It’s hard. It’s horrible. But it’s not hate.”
  • “I’ve always wished I didn’t have it (obviously), and I hate what it’s done to my body and how much it’s cost in both money and effort, but I’ve never hated the disease itself. It’s just part of who I am.”
  • “On some days or in certain moments, YES with a passion. However, most of the time, I’m kind of indifferent about it or it can feel like a minor annoyance or inconvenience. On rare occasions I actually feel that it gives my life more meaning.”
  • “Every damn bit of it, except for seeing how exceptional my daughter is in spite of it.”
  • “On an overall day I don’t hate it but when I stop to think about the expense or the guilt when I pig out on something or thinking about potential long term effects I hate it. I also hate it when it interrupts a full night of sleep which is does most nights but during the day I’m not walking around with hate on my mind.”
  • “No. Hating takes so much energy, emotion & attention. I already give diabetes so much of those. I don’t want to give it more.”
  • “No time for hate. To busy being SO ANNOYED.”

  • “I feel hate is too strong a word. I don’t enjoy living with it but that’s the thing… it lives with me not in place of me. It doesn’t stop me from particular events in life but it does have me consider them more. For instance I have never had an A1c lower than 8% and therefore have never been given “the go ahead to ttc ” but in saying that it won’t wholly define our choice, our timing nor the outcome.  It can be hard, tiring and frustrating but it isn’t worth hating.  I probably wouldn’t be the person I have become, without it.”
  • “Hate maybe isn’t the right word…but I certainly resent it. I get that people appreciate the community and relationships they’ve made because of diabetes, but didn’t we seek those things out as a way to cope? Just think of what we could have done if we hadn’t felt the need to find that support. I doubt I’d have a spotless medical record without diabetes, but starting with a level playing field would have been nice.”
  • “Well, I don’t hate mine, but I kind of hate other people’s. Like the fact that so many people here hate it makes me hate it. But if it were just mine, I wouldn’t be that mad about it.”
  • “I do not. I hate many things about it but, at this point, it’s all I know. If a cure were found tomorrow, I would be utterly confused.”
  • “Nope. I barely think about it. It’s just something I do. Part of my daily routine.”
  • “It is bits and pieces of the fabric of my girls. I wish terribly, fiercely, sometimes desperately that it wasn’t a part of them or anyone else. But hate … if I am honest, I can’t hate it. That emotion would tear me up. I have to focus on being strong for them. So I focus on the things that we can control and I work hard to make it as easy, ignorable and stress free as possible.”
  • “Hate is such a strong word. My feelings towards Diabetes aren’t that strong. I have stronger feelings about people who are hateful and disrespectful. Diabetes certainly takes a back burner to that. I would certainly be ‘me’ without Diabetes and it would be amazing if it were obsolete but I’m not going to put that much thought into something I cannot control.”
  • “Sometimes. But feeling constant hate would make my life a lot more stressful I think. Most of the time we co-exist with various degrees of annoyance. Sometimes I would like to punch it in the throat.”
  • “More then I could ever explain.”
  • “Nope. Met a lot of great folks in real life and online due to it. It’s something that I deal with on a low level constantly and so it doesn’t really flare up to a major pain for me. Everyone has something. I’d rather have something that is manageable, invisible to the world, and commonly understood by the general public on a basic level.”
  • “I don’t hate it. I have some semblance of control over it and at least technology and management is improving drastically all the time. I have another medical condition that is a total wild card, that while it (probably) won’t kill me, could make impossible to walk or use my hands at some point, makes me much more physically tired than diabetes, and makes me physically unable to do certain things. And has far far less chance of getting better or being cured. If I could “just” have diabetes, I’d totally do that.”
  • “Yes. I’m not going to sugarcoat that one. But I don’t hate it enough to let it cripple me/us. I don’t give anything that much power over me.”
  • “Sometimes. I hate that there are many aspects of life I can’t be spontaneous with, and that some times I plan and nothing goes to plan. I hate that I constantly think about health insurance and the role that diabetes plays in my financial stability. There’s a daily, if not hourly, fluctuation that exists when it comes to feeling positive, neutral, and negative about my diabetes.”
  • “Well, I sure as hell don’t love it!”

For me, after 31 years of type 1 diabetes, I don’t carry around a lot of anger or shame about diabetes, but I don’t harbor warm, fuzzy feelings.  I don’t hate it. I don’t like it and would get rid of it in a heartbeat if given the chance, but I don’t spend the day loathing it. (Some days, yep.  I can’t pretend to be happy about this condition.  Especially now that I’m getting older and Things are Happening that make me wonder, “Hey, is this diabetes?” or “Hey, is this just the aging process?”)

But I think that’s because it’s mine and mine alone. If one of my children had diabetes, I’d hate it seventeen different ways.

The responses from people on Facebook were so diverse, just like our community.  And I think responses could also change depending on what’s going on in the world, in their lives that day, or what result might have just stared back at them from a glucose meter. No “right way” to feel. Whatever way you feel is right.  Diabetes is part of every day, and the emotional influence is has on our lives is rarely discussed but nonetheless pervasive and constant.

But I’m glad we’re starting to talk about it.  No matter how we feel about diabetes on any given day, the community that’s bloomed around this disease continues to inform, inspire, and redefine living with diabetes.  That’s something worth loving.

 

 

 

(* All of the following bullet points are from comments on th FB thread.)

Imagining Life Diabetes-Free.

I read an article today – Imagining Life Diabetes-Free.  This quote gave me pause:  “She said her mom equates living with diabetes to being ‘like a duck on a pond: it looks graceful and calm just swimming along, but below the surface, you don’t see the paddling, and all the work it’s doing to keep moving forward.”

What would it be like to not be paddling so furiously?  I tried to give that thought pattern a go.


I pictured waking up in the morning and leaning into the baby’s crib to give him a smooch, then rubbing the sleep from my eyes while shuffling into the bathroom to brush my teeth.  No checking my Dexcom graph immediately upon waking, no pricking my finger and challenging myself to put toothpaste on the toothbrush before the result comes up on the glucose meter.

I would put the little Guy on my hip and go wake up Birdy, not worrying if I was impaling my son’s buttcheek on my insulin pump.  No low blood sugar would keep me from bringing my kids downstairs in time to eat breakfast before the school bus came roaring by.

Super wet diapers or requests for more than one glass of water at dinner would not make my stomach drop and my heart feel heavy.

My day would consist of emails that had nothing to do with diabetes and video calls where I didn’t keep a juice box just out of sight.  I’d breastfeed my son without concerns about going low afterwards.

I’d go for a run with only my car keys and my phone – no glucose tabs.

Lunch would be a meal instead of a math problem (If my blood sugar is 103 mg/dL and I’m eating 15 grams of carbs and I pre-bolus 1u of insulin, will two trains leaving at the same time from New Haven have enough glucose tabs on board to bring me up, should I start to tumble?).  I’d plan my meals around what people wanted to eat and when they wanted to eat it.

I’d think Steel Magnolias was a really sad movie and that Sally Field is a tremendous actress instead of wondering for decades if it was going to be me.

My body would be absent the scaly, itchy rash that comes up as a result of my diabetes device adhesive allergy.  My fingertips would be smooth and unblemished.  If I had a brief millisecond of clouded vision, I’d think, “Meh – something in my eye,” instead of “DO I HAVE DIABETES IN MY EYE?!”

I would think dresses with pockets are cool instead of finding a cute dress with pockets and buying that same dress in every frigging color available.

I’d only have one pump at my house.

Bank account balances would ebb and flow as a result of non-diabetes purchases and responsibilities, without that nagging need to have a clot of cash for constant copays, premiums, and out-of-pocket medical expenses.  That need for medical insurance would be a source of stress but not a point of panic.

I’d see cupcakes and giggle about how they’re “diabetes on a plate,” blissfully unaware of how fucking ignorant “diabetes on a plate” sounds.

I’d worry about the future like everyone else instead of worrying like everyone else and then adding the unscratchable need to have three year’s worth of insulin and syringes in my house at all times.

I’d fall asleep at night and expect to wake up in the morning, without issue.

I’d have a family and friends and would travel and write and experience things that are scary and exciting and a mush of both …

… wait a fucking second.  I have a family and friends.  And I travel.  And write. And I experience things that are scary and exciting and a mush of both.  Diabetes does not keep me from living the life I want.  It’s an enormous pain in the ass at times and I have uneasy feelings about what it will look and feel like twenty years from now, but I am still here.

Imagining life without diabetes sounds nice and I can’t wait to find out what it will be like.  But I’m holding my own either way.  Paddling on.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

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