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Posts from the ‘Diabetes and Family’ Category

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.)

Guest Post: Until Next Time, FFL.

Leigh Fickling was at the Friends for Life event this past weekend in Falls Church, VA and this morning, she posted about the power of FFL and of the green or orange bracelets given out to attendees on her Facebook page.  I asked if I could share her post on SUM, and she was kind enough to say yes.

Take it away, Leigh!

  *   *  *

The armband.

I remember laying in the hospital bed with Ava almost five years ago and looking at her little arm. She was three. Her arm and wrist were full of IVs and she had on a little tiny hospital arm band. The nurses scanned that band every time they came into the room. Blood sugar checks. Scan. Insulin shots. Scan. Vitals checks. Scan. It was an armband that broke my heart. I couldn’t believe that she had been diagnosed with diabetes and couldn’t imagine how we we ever go on. I laid in that hospital bed and held her hand and never felt more alone in my life. I was suddenly in a place that was unfamiliar and I was afraid. I took a picture of our hands and have that picture burned in my memory still to this day.

I remember moving over to the big blue mom chair in our hospital room and turning to Dr. Google. I didn’t know anything about diabetes but I knew the Google would know plenty. One of the first links that appeared in my search was for Children with Diabetes. Sounded like a good hit, right? I now have a child with diabetes. I followed the link and went to the webpage and found the information that I needed. Forums. I had no idea that the Facebook groups even existed yet but found people just like me in the CWD forums. Newly diagnosed. More seasoned parents. Providers. Peers. Support. I spent hours that first night reading as many posts as I could possible read. Learning. Writing down questions. Looking at my tiny daughter and her armband. Wishing that it would all just go away.

It didn’t. And, it might not ever.

Flash forward almost five years to Friday. It was time for another armband. This time I ran to the people giving out the armbands. I couldn’t wait for the registration table to open so that I could grab my bands and put them on our wrists.

This time, the arm band gave me hope. It made me smile. It made me laugh. And, cry. Instead of being isolated in a hospital room and feeling alone, I was with several hundred other arm bands. Parents just like me. Kids just like Ava. First timers. Old timers. Grandparents. Babies. The circle of diabetes life and we were right in the middle of it bound together by green and orange armbands.

Third grade is hard. Work is hard. Life can be hard. We don’t give up but we do occasionally get down. Who wouldn’t?

I think that I underestimated the power and magic of the orange and green band. The healing power. The friendship and companionship. Speakers at the top of the field giving hope about the future and tips to make it through until we get there. Kids that have screamed and squealed and run through a convention hall with absolute delight. Hair that smells like chlorine. Lips stained with sugar free fruit punch. Hugs and hand holds and elbow bumps. Lunches with moms just like me. Alarms ringing and one hundred people clutching their bags ready to offer glucose. Personal stories that ring true with everyone. Amazing session. Supporting vendors and exhibitors. So much food complete with little accurate green carb counts.

I think that my pancreas battery was running low.

Thank you Jeff Hitchcock and Laura Billetdeaux for helping me to recharge. This weekend. These Friends for Life. This is what diabetes is all about. Thank you and the entire team for giving us armbands that mean so much at times when we need it more than ever.

As we drive back home today, our armbands are still bright and intact. As the days fade, they will lose their bright colors but will still be a reminder that we are not alone. We are in this together. In a circle.

Until next time, FFL.

  *   *  *

Leigh lives in Durham, NC and is mom to 8 year old twins, Ava and Davis. Ava was diagnosed with type 1 diabetes when she was three years old. Leigh’s day job is the Director is the Disability Management System at Duke University and Health System, and her other job is to be Ava’s pancreas.

Until next time indeed, Leigh.  Thanks for letting me share your perspectives, and for everything you do for the diabetes community.

A Sobering Experience

“Do you mind ringing out this orange juice first?”  I asked the lady who was working the cash register.

“No problem,” and she went bip with the scanner against the bottle’s bar code while my Dexcom screamed BEEP BEEP BEEP! from my phone.

I opened the bottle and downed the majority of it in one, open-throated gulp.  My son, strapped into the front of the shopping cart, reached over to the conveyor belt as the groceries were unloaded, one by one, by his mother with the bird hands.

“Hang on, little guy.  Here, play with this,” I said, handing him a crinkly toy elephant that was peeking out of my purse.  I ran my sleeve against my forehead to catch the beads of sweat that threatened to run down my face.  My ankles felt weak and I know I stumbled a little when I went to unload the contents of my carriage onto the conveyor belt.

“Miss, do you have a Stop & Shop card?” the cashier asked, sizing me up.  She was my mother’s age.  She watched me fumble with my wallet in search of the card, and I dropped it instead of landing it into her hand.

“Hang on a second,” I said, carefully bending over and plucking the card from the floor.   My son yelled, “YEAH!!!” and then “HEY!” from the carriage.  My blood sugar was still dropping and the Dexcom kept hollering.  Clumsy hands and the fog of hypoglycemia made my every movement look ridiculously awkward.

And I knew, knew, knew that the cashier thought I was drunk.

I read Riva’s article about hypoglycemic episodes looking like drunk moments and shook my head in recognition of the concept, but honestly hadn’t ever been mistaken as drunk when low before.  In college, I had this credit-card sized placard in my wallet that said something like, “I have type 1 diabetes.  If I seem drunk, please allow me to check my blood sugar to make sure I am not experiencing low blood sugar.”  I never had to use it, and my college roommates and I giggled at it once in a while, probably because we were actually drunk.

But yesterday at the grocery store, I wished that card had been in my wallet.  I would have handed it to the cashier and pointed sheepishly at the orange juice.

Instead, in the fog of my low, I gracelessly unloaded and paid for my groceries while wrangling my one year old.  Running my debit card for the purchase, I said to the cashier, “I have diabetes.  My blood sugar is low,” but I’m not sure she believed me.  My brain wasn’t sweetened enough to really care.  I was more concerned with pushing through to the other side of this low.

After we paid, I moved the carriage over to a row of benches just inside the main door of the grocery store and we sat there.  I finished my orange juice.  A few minutes later, the arrow on my CGM graph started pointing in a more respectable direction.  I almost went back to the cashier to explain myself more lucidly but decided against it.  Maybe next time I see her, I’ll explain.  For now, it was time to go home.

“Mama?  Mamamamamamamama …” rambled my little man.

“Okay, sweet boy.  We’re good to go.  Let’s go.”

Thirty One Years with Diabetes.

When my diabetes marked it’s 25th birthday, I wrote a bulleted of stuff I’ve learned since diagnosis.  Another handful of years later, most of that list still holds up, with a few tweaks:

Sometimes I can’t believe this is still A Thing.  That diabetes is still a thing that requires attention, work, and patience.  I used to believe in the “five more years until a cure” thing, but that promise has been folded and refolded six times over by now.  I believe that the research maybe prevent diabetes in my children, but I’m not sure it will cure it for me.  And that weirds me out.  “Forever” was always tempered by that, “Yeah, but five more years …”

And there’s a strange sense of acceptance that’s come in the last seven years, accepting that diabetes might not really be cured for me.  I find myself looking at research and technology that’s rocketing towards alleviating the burden of diabetes on people living with it and feeling awesome about that progress.  And it’s not just the Big Companies who are making a difference.  It’s the renegade ones.  And the community groups.  And the PWD empowered and inspired to make a difference.

I’m regularly impressed by families who live with diabetes.  They know how to take These Things seriously without taking those Things too seriously.  They speak in a special language of numbers and ratios and tubing lengths and labwork percentages.  They are tireless, even when they’re tired.

They inspire the absolute hell out of me.

Life is still filled with a whole bunch of colors and I’m not done coloring yet … even if it’s occasionally outside the lines.  Despite diabetes.  And because of diabetes.

But duuuuuuude, I still pretty much despise this disease.  Yep.  I can’t pretend to be above that, to have embraced it and found happiness in it.  Nope.  I do not like diabetes.  Any grace that’s borne of it doesn’t change the chokehold it’s had on my life at times.  I wish that wasn’t true, but it is true.

However.  I have gained so much from this disease.

Not just perspective, although that’s a powerful grab.  Troubles whittle themselves down a little bit when put through the mental diabetes woodchipper.  That perspective has been to my benefit as I went through my teen years (other girls were angry and upset that their jeans were a size 8 instead of a size 2 –  I was fine with a size 8 so long as my morning BG was between 80 – 140 mg/dL) and also as I managed pregnancies (stretch marks?  morning sickness?  yeah, but that healthy baby, though).

I’ve also made friendships – ones as chronic and lifelong as diabetes – where these like-pancreased connections are part of my inner circle for life.  FOR LIFE.  This connection was forged through similar circumstances but will remain intact despite distance, time, and even a cure.

But the reality of diabetes sets in more and more, especially as the same realities of Regular Life hit their stride.  I can’t pretend that it’s all easy and effortless.  This shit might look easy, but some days it’s hard.

Diabetes scares me more now that I’m older.  I read about heart attacks and other crisis events and used to think, “Damn.  They were so young.”  And now I read, thinking, “Damn.  I’m in that age range where I’m old enough for it to happen and young enough for people to think, ‘Damn, they were so young.'”

This freaks me out.  I worry about the Big Things more these days than I did before.  I try not to, but I still do.  Sometimes bedtime is when my brain hits the spin cycle and I have trouble falling asleep, picturing What Ifs and Oh Shits.

Aging and diabetes is now a thing.  Are my knees making that weird cricking sound when I run up the stairs because I’m older?  Or because of diabetes?  Or is it a combo deal?  And when you answer, can you speak up because I’m seriously having trouble hearing you.

Even after 31 years, diabetes still has days where it behaves.  And days when it doesn’t.

I can say exactly the same for myself.

Since I wrote my list at 25 years of diabetes, I’ve had another little baby bird and my life now is tied to two young people, not just one.  I have two babies to stay healthy for, two babies to annoy well into their old age.  The motivating force towards good health that my children provide cannot be properly appreciated.  They are my little world.

My hope lives in a different house now.  As I mentioned, I’m not expecting diabetes to be cured, but I’m anticipating that I may be able to ignore it altogether in the future; that data and technology will come together in a way that doesn’t make me produce insulin but also doesn’t produce worry and anxiety in the same way.  Stick on the device and it will diabetes for you.  Yes, please.  Hurry, please.

Instead, I hope for my kids.  I hope for their kids.  I hope that my mom will know with certainty that diabetes will never make my life less mine.  I hope that my husband knows I’ll be around to drive him bananas for decades to come.  I hope the community rallies and sticks together with one another, rising up against our common enemy while educating, supporting, and loving one another.  Enormous thanks to all of you for being part of a network of hearts and hopes that make this walk with diabetes easier, and less lonely.

After 31 years, I look at this body, all riddled with shouldn’ts and can’ts, and see that it should, and it can.

And it will.

 

One Year Old.

To my tomato,

A year ago today, I was driving up to Boston for another prenatal appointment to check on you.  At 38 weeks and 2 days pregnant, a slightly spikey blood pressure was enough for the medical team at Beth Israel to decide that August 23rd would be your birthday.

It was late in the afternoon when they prepped me for surgery.  The sun was bright and shining in through the windows of the operating room, and I couldn’t even tell you the name of the doctor who delivered you, as I was so nervous about your arrival.  Would you be healthy?  Would you be okay?

In a combination of perseverance, hard-earned good health, and a dash of excellent luck, you were born into the world a healthy,easy-going little guy who made my heart actually ache, it was so full.

Re-entering the land of snappy onesies, breastfeeding, and no sleep was a jarring change, as my mom brain was fully immersed in the land of independent kids, but we fell back into step with your little guy needs pretty quickly.  This second time around, your dad and I were better about packing lighter, not buying every baby thing that Parenting magazine deemed “essential,” and we busted out some hand-me-downs from your sister (crib, dresser, stroller, high chair, a bin full of Batman pajamas in varying sizes … we saved everything).

And once we had our footing a bit, you were thrown immediately into our family traditions, from big, messy birthday parties to trips to Orlando for conferences to visiting Bar Harbor.  Even though you’re only a year old, it feels like you’ve been occupying the room across from your sister’s room forever, as though your bookcase filled with favorite books has always been there, your banana toothbrush in the holder in the Batman bathroom always.

You have two teeth that popped out just in time for your birthday.  You have taken several steps but haven’t started full-on walking because you seem to become so amused by your own mobility that you collapse into a giggling heap after a couple steps.  Your hair is light brown and super curly, all unruly and lovely.  Your laugh is loud and boisterous.  You love when the neighborhood kids come by to high-five you, and swinging in the baby swings at any playground, and when the cat saunters by you drop everything to creepily whisper “… caaaaaaaat.”

Little Guy, you have the most mellow, sunny disposition and once someone earns your smile, it lights up the entire state of Rhode Island.

Your sister is my favorite because she is my first.  You are my favorite because you are my last.  Our family is complete because of you; you fill the fourth chair.  I love you and the crazy chaos you’ve brought into our lives.

Happy birthday, my littlest friend.

Love,
Mom

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