The TRUTH: (The one were I say suckity suck suck more than once)

April 2, 2013By 36 Comments

 

Lauren with Nick. I get it: she looks like she has not a care in the world.

Lauren with Nick. I get it: she looks like she has not a care in the world.

I was sitting with my daughter with diabetes and chatting with a person who has known her all her life. Lauren was in town for a quick visit and I have to say it: she looked great. We were talking about life and friends and some kids we know who are going through a semi-rough time (not medical related, more personal stuff).

The visitor looked at Lauren and said this:

“You’re lucky. You’ve never had to deal with any big problems in your life.”

I jumped up, picked the person up and threw them through the window at a force so strong it not only sent them careening off our neighbor’s front door, it broke that door into pieces.

Okay, I didn’t do that. Instead, I seethed quietly. I felt my anger bubbling up into my throat. But I didn’t say a thing. When the guest left, my daughter and I laughed.

But you know what? It’s not funny. Because here is the thing (be warned. I’m not often pissy and whiny on this blog, but today I feel the need): While we do our best to work toward an amazing and fulfilled life despite diabetes; while every day of my daughter’s nearly 16 years with diabetes on board has been about “yes you can!” this road has not been an easy one for her. And while we’d not change our lives for anything, she’s not been without challenges. She’s had to deal with some big, big honking challenges. Make no doubt about it.

And while, no: I do not expect the person who knows little about T1D or does not know our family well to understand that, I DO expect those who have been around us all 15+ years of T1D to get it. I know: part of this is my fault. I raised my daughter to not complain and not whine. I taught her to deal with it and move on. Time after time after time after time. I encouraged her to NOT dwell, even on the roughest days.

So I feel like I need to make it clear and then put it aside:

Life with Type 1 Diabetes on board can totally SUCK. SUCK SUCK SUCK.

 Ahh, that felt good. Let’s be sure you heard me: diabetes can suck. Suck. Suck suckity suck suck. Suckerific, suckmeisterly suck sucks.

 

Got it?

Got it?

Here’s the tightrope we walk, this life of raising a child (and then helping guide an adult, as I do now) through this life with T1D: it’s challenging, it’s scary, it’s frustrating and it’s sometimes just awful. But we have no choice other than to accept it, make the best of it and live well despite it. We cannot walk around all mopey and wearing our struggles on our sleeve. Who wants to be shrouded in “victim?” And since diabetes shows no outward “symptoms,” most folks figure: that’s cool. She checks her blood. She takes her insulin. And she’s fine. She’s regulated.

I guess sometimes that our rocking it like bosses makes people assume it’s not a big deal.

So today, a bit of education. If you’re reading this blog, you most likely already know all this. But pass it on. Share it with friends who might not get it. Post it on the wall of a family member or long-time friend and just say, “I know you know this – but read it!” (Because in my case, it seems, some don’t!) Here’s what I have to say about life with Type 1 Diabetes:

*It’s relentless: There’s not such thing as “remission” with T1D. Even on the average day. My daughter can check her blood glucose and see an “in range number.” Does that mean it’s going to be a schwinging good time all day? Nope. Not even. Because every hour of every day, stress and exercise or change in routine or a carb that is counted slightly off or an injection site that has a tiny bit of scar or, I don’t know: the stage of the moon (!!??!!) can impact her blood sugars and make them high or low. As one friend said recently “I believe that wearing orange underwear may in impact blood sugars.” That’s how random it is. We in this D-world must live in a permanent state of the heady combination of suspended animation (“We are fine. We don’t mind.”)  And hyper-vigilance (“It’s never fine. We must keep tabs. Always.”) Try combining those two. Like I said: it’s relentless.

*It’s boring: Pick a task – any task. And then assign it to yourself for, oh, let’s just say eight times a day to be conservative. And then do it. Over and over and over. If you skip it once, punish your body with a smack against a railing or something. That’s what it’s like. I remember one time a friend was over and I’d left Lauren’s glucose check strip box out. The friend looked down at the box and saw the script instructions and gasped, saying “Ten times a day? Is this for real?” Yes, it is. And even if it helps, it’s lousy to have to rinse and repeat and rinse and repeat and rinse and repeat. It’s boring. And annoying. Any mere human would waver. And yet, in the world with T1D, we really should not.

*It’s scary: I’m not talking about complications like kidney and eye disease here. I really, truly believe that we’ve come so far in complications treatment (thank you to each and every one of my friends who have donated to JDRF), that those things will be rare in first world countries in the near future. But it’s still scary. Like, if my daughter goes out for a couple of beers. I worry and stress and fear that she’ll have a low that will hurt her. Or if someone’s child was low (or high) before bedtime. You tuck them in and then … you wait. And worry. Send them off for one of their many “Firsts.” A sleepover. A prom. A school trip. A drive in a car in which they are the driver. College. It’s terrifying. For us, and for most, it all works out. But it’s a level of “holy sh** that thankfully, most never experience.

*It’s expensive: Co pays. Gas to get to appointments. Parking there. Needles that are not covered because while the insulin is a must, your insurance company feels the needles are a “luxury item.” Missed work days. It goes on and on. Diabetes is one hell of an expensive way to live. And guess what? That means you, the person without diabetes too. Treatment of D accounts for one in every three medicare dollars spent in the US. Think a cure won’t help you? It will help your wallet.

*For now, it’s forever: There’s no way to mince these words. While my daughter hopes  for a brighter future and works hard (as our entire family does) to move us toward better treatments and a cure, we are not at a cure yet. So that feeling of not knowing what will happen in two hours? For now, it’s forever. Until the cure, there will never be an hour my child does not have to think about diabetes, does not have to react to diabetes, and does not have to feel some or all of the above.

That said, it does not define her. We raised her to be strong and independent despite diabetes. We taught her to do whatever she wants to in life and to work hard at NOT letting diabetes rob her of her joy. And she’s doing great.

So while I get it that all this might not show, and while I remind my daughter (I know she’s reading!) to NOT be a victim, to NOT give in to the weight of it all and to NEVER slow down her amazing rate of happiness, I also say this:

Don’t ever assume her amazing ability to rock all this means it’s easy. Got that?

Good. Now I have to go clean up that mess in my neighbor’s yard.

Filed in: Advocacycurediabetes diagnosisdiagnosisfeaturedFundraisingGeneral Healthglucose meterInspirationKids CanTeen Years and the challenges Tags:

Comments (36)

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  1. Sue says:

    So funny, so sad, so TRUE! You had me laughing and crying at the same time!

  2. Sandy Zellmer says:

    Moira, love it! Soooo true.

  3. Moira, I can relate to this. I live my life in such a way that no one (and I mean no one) thinks my diabetes is a big deal. I recently had someone who is new to insulin (but not new to diabetes) experience a “bad” low. I quietly thought to myself, ‘yup,’ but didn’t say a word. Later that person said to me, “now I have a new respect for what you deal with when you have lows.” So while I honestly want people to see me first, and not diabetes, it’s nice to have a little acknowledgement every once in a while.

  4. Denise says:

    Loved this!

  5. Sean says:

    great job!

  6. Tim Brand says:

    Another great post! Many of these thoughts ive had. I like the “all’zzz ya have ta do is take ur insulin and u’lll be fine crowd”. Little do people know.

  7. Melissa says:

    Amen! As I sit seething today over a conversation with next years scho nurse. “What do this doctors say about” thays ramdom low of 35 that my son didn’t wake for or hear his Dexcom. Well nothing! A random low doesn’t call for any changes. A pattern would. But I get morw about my son than the endo and thankfully we have an endo who listens to us and is a team with us!

  8. Sammie D says:

    Such a great post. Handling diabetes without complaint gives people the impression that it is easy. Its an hour by hour, lifetime demand. Thanks for sharing!

  9. Lauren M. says:

    Yup. Agree with Every. Last. Word. (As usual)

  10. Laura says:

    Tears in my eyes. You nailed it!
    I tell people that T1D is no big deal, and as soon as you understand that, know that it’s the biggest deal you can imagine and a bigger pain in the a$$ than you could ever understand.

  11. michelle says:

    Love! So spot on! and we all know how hard it is to make it all look so easy! Thank you for the reminder.

  12. Cheryl says:

    Very powerful! As you know Julianne doesn’t have diabetes yet her medical conditions are invisible except if you pulled her hair up to see the brain surgery scar or the 18″ scar on her back of the 3 scars on her lower back that just widened every time they open her up, you could see her conditions or the Band-Aid cures. Imagine a thin 16 yo not wanting to wear a 2 piece bathing suit because of the red ugly scar? It’s invisible to you or you but not to her in a dressing room trying on bathing suits or a summer top. Or perhaps those who could spend a week with us and see her cry in pain at home after 2 hours in school or an afternoon with friends. We taught her the same, don’t let Chiari define you. And she hasn’t but it does define her at home, that is where she cries, throws temper tantrums in frustration. And that’s okay. But when someone says “Why isn’t she in school? Why doesn’t she have her drivers permit…every 16 yo is dying to drive!” Why yes, she wants to drive. She can’t sit long enough to drive. Her doctors have not cleared her to drive. So that well dressed, smiling, spoiled (according to many!) young lady can’t do the same things your child does at the same time. See she’s different. She does have the latest gadgets…it helps her pass the time when her friends are out socializing and she’s home on the couch in pain, in the hospital or simply alone because most of her friends don’t include anymore. I guess after so many no-shows, you’re on the no-invite list. If only some people could live a week in other’s lives they would not be so judgmental on how perfect of a life everyone has. My daughter like many of yours here reading this blog is making me proud because she is a victim of a disease but doesn’t let the real world know therefore she’s a hero and so are all of you!

  13. Sharon L. says:

    I could have written this myself…times 2. As the mother of 2 girls with Type1, it’s the relentlessness of the disease that wears on everyone. I’m used to stupid comments over the past 14 years, but sometimes it just gets to me. like the time a well-meaning mom said “at least it’s not cancer” …to which I said “yeah…for all cancers combined, there is a 95% cure rate, diabetes has a 0% cure rate”. she said ” yes, but some get the bad kind of cancer and die”. To which I said…yeah,” like the bad kind of diabetes?” I knew it was a losing battle, so I just sat quietly after that. I do have a dear friend who has cancer, MS and type 1…. And she says if she could be cured of one, it would be the diabetes, because its the hardest to live with.

  14. Bev Moon says:

    And I’m the grandmother of these two wonderful girls posted by Sharon L. Very good article and I’ve seen all of this and dealt with some of it when the girls were here. I’m putting a link to this on my FB page–I’d love for all of my friends who have donated to JDRF over the past 14 years to know how their donations have helped–still hoping for a cure sooner than later.

  15. Melissa Lee says:

    PERFECTION. No other word for it. (And I knew orange underwear were suspicious.)

  16. Katie says:

    Moira, this is great. I wish family members would also learn to NOT make stupid remarks, like “Why don’t people with diabetes just get on with it?” (Almost my all time favorite stupid remark… like, if they weren’t just getting on with it, they’d be dead, you idiot)

    And, just because we parents may worry, sometimes non-stop, the kids and adult with diabetes don’t have time to worry. they are too busy “just getting on with it” and doing all the other things.

    Family and close friends who should definitely know better are often the most at risk of being defenestrated.

  17. Moira says:

    Defenestrated! I did not even know that was a word. I’m so excited now!!!

  18. kim schumacher says:

    Another great article, Moira!

  19. Suzanne says:

    Thanks for writing this! I have a 3 year old with Type 1, and have recently run into 2 other women who have have their kids (also under the age of 5) diagnosed with T1D in the last few months. It is so important that others know that it IS a struggle for both the individual with T1D, AND their fmailies. We don’t need a “look on the bright side” comment all the time, what we do need is a “what can I do to help?” Because when you are dealing with babies/ toddlers with this disease… all bets are off on the “control” issue. Will they eat their lunch? Are they throwing their 12th tantrum that day because they are 2, or because their blood sugar is off, and they feel like crud? I do what I can, and offer lots of hugs. I can’t even imagine what the teenage years will be like! So glad your daughter has a good sense of humor to help her thorugh it!!!

  20. Jen says:

    Mmmm, very, very true! Yes, its people not understanding, not realizing, that’s so infuriating. And the randomness of it. Very well said. At least here in the UK your penultimate point doesn’t count; at least here its free, and we get such great care. We must protect out NHS, its precious.

  21. Maureen says:

    First thing I thought of this moring was your post and how diabetes suckity suck suck sucks. Thanks for writing it. Justin has an abcess tooth possibly helped along by too much sugar in his saliva. The infection is now causing elevated ketones so he needs to take insulin but his blood sugar is only 65 so he needs to eat but he can’t eat because of too much pain from the tooth infection. OThis is fun! Only somelese else living with this disease would understand how something as simple as a tooth infection can set you into a diabetes tailspin. Diabetes sucks.

  22. Brandy Slater says:

    Magnificent! Truly. I needed this in more ways than you can know. THANK YOU. (And, on a side note, “sucks” is not a word we use in our household . . . except in the phrase “diabetes sucks.” I just told my 12-y-o CWD last week that she should make t-shirts that say “Diabetes sucks!” on the front and “But I totally rock!” on the back. You’ve begun the design for us already!)

    • Moira says:

      We don’t use it either!! and I thought long and hard about using it here since I’m a HUGE English language person and really, it’s not right. But sometimes you just have to say SUCKITY SUCK SUCK!!! ;-)

  23. Well said, Moira. Thank you.

  24. Sara says:

    Yup!

    I spend so much time convincing people that diabetes is not that big of a deal and then get super annoyed when they don’t understand how big of a deal diabetes is!

  25. Marcia says:

    THANKS, that is absolutely exactly how I feel.
    Is it sad? or comical? …hard to decide

  26. Karen says:

    This says it all!! I have 2 daughters living with disease – going on 11 years now. It is exhausting and relentless. Thanks for saying all the things I feel but couldn’t put into words as succinctly (sp?) as you did.

  27. Barbara Williams says:

    I am a PA and CDE in a pediatric endo office and one of my patient’s moms sent this to me, how great, I am giving a talk to school nurses in an hour and am going to try and copy this for them so they get some perspective.

  28. Pat says:

    great post! I was thinking some of these same things on our drive back from IL this week as I was putting together our scrapbook in my head. Thinking how I can get across what a daily job it is, when to look at my happy, healthy daughter people seem to think it must be easy, no big deal. We don’t let T1D control our family, but it is anything but easy at times.

  29. Eileen says:

    What an awesome post. My now four year old daughter went low for the first time at her private preschool a few weeks ago. The assistant administrator asked me if this will ever get better once her pump is regulated. This was after they asked me to come pick her up from school even though she was treated for the low and was fine!!! I just broke down in tears and said this is my life. There will alwasy be high’s and low’s. All you can do is your best. I plan to save this blog to help my friends and family and others who have contact with us read and maybe then they will understand a little more about our life with T1D! Thank you Moira! Praying and working for a cure! Hoping to raise a wonderful and resilient and independent child! It takes a village!

    • Moira says:

      Hang in there Ellen. In time, when she is bigger (even first grade) you won’t have to go get her and she’ll roll with the highs and lows. I promise.

  30. Jenni says:

    Well said. People just don’t realize, you do what you have to and make it look easy but it is so hard, on everyone.

  31. Candice says:

    Thank you! Excellent article. Every three months when we’d show up for our Children’s appointment, we’d laugh and say, “time to play who’s the Worst Mother in the World” because it was hard to explain that no matter how seriously you take it, there are going to be high numbers. My daughter is in college as well (last year! woo hoo!) and I’ve always tried to give her the same perspective – “look around you – you may not see it but that kid probably has asthma, that kid has food allergies” – we are all dealing with something so you have to just make the most of your situation and learn to live with it.

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