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Wednesday, December 29, 2010

One disease to rule it all

I am a huge Lord of the Rings fan. I love the interwoven themes, the cast of characters, the rich and deep storytelling. It's a world that you can delve deep and get lost in. Like most of the great tales, I can usually find myself identifying with one of the characters.

Lately I've been feeling a lot like Frodo. The quiet hobbit who was thrust, very reluctantly, into a position he didn't want, and worse, felt unprepared for. He was given a daunting, almost Herculean task. And the fate of others depended on his success. The ring, the very thing that was entrusted to him, threatened to destroy him.

My daughter's diabetes is my ring. I don't want it. I'm unworthy of doing battle with it. It threatens to overrun my spirit; my very being. And while it will not take my life; it is very capable of taking Elise's life.

To me, Diabetes is the one disease that rules it all (and no, I'm not comparing it to other diseases in this case). What I mean is that it touches every part of your life, and nothing emerges unscathed.

Diabetes rules your relationships. Is there anyone who is reading this who has not lost friendships because of this disease? Has your marriage not been affected? I am also happy to say that I have gained many dear friends due to diabetes.

Diabetes rules your watch. BG check time, shot time, meal time, snack time. Repeat ad infinitum. Almost every hour on the clock seems like it's dictated by this disease, and hardly a minute goes by when you're not thinking about it.

Diabetes rules your calendar. Maybe one day when we're on the pump it won't be like this, but for right now we've had to turn down two birthday parties this month because of the timing. One is in the afternoon, falling right between snack and dinner time. Plus they're serving cake and ice cream. It breaks my heart to think of the fun Elise will be missing. Hopefully one day soon, this won't happen as much.

Diabetes rules your pocketbook. I shudder to think about the amount of money we have poured into this disease. And while I would pay 100 times that amount to keep Elise healthy, I worry that there might come a day when we can't afford it.

Diabetes rules your food. If Elise could chose her favourite meal, it would be pizza and pasta, some french fries on the side and ice cream for dessert. That girl loves her carbs. And while I let her eat all of the above, I try to limit her to one high carb item per meal. But what I hate most is when, at the end of the meal and all her carbs have been accounted for; she asks for one more piece of bread. Or a bit more pasta. And I have to say no. It. Just. Sucks.

Diabetes rules your sleep. Or lack of sleep. Midnight, 3 am, 5 am checks... doesn't leave a lot of room for any shut-eye.

Diabetes even rules your very soul. Do you not feel lonely? Alone? Like nobody understands or even cares? Do you find yourself in a deep funk; unable to get out? Sometimes I feel like if one more thing is added to my life, I am going to go crazy. Some days I am so overwhelmed, all I want to do is sit on the sofa and cry until there are no more tears. I miss the old me. I feel like I'm half the person I used to be.

In the end, Frodo manages to reach Mount Doom and the ring is destroyed. And as much as I wish this could happen with Elise's diabetes, unless there is a cure, it will not. There will come a day where the quest for me is over, and I will pass the ring onto Elise. But there will be no destruction in our tale unless we find a cure.

Until then, I will carry this burden, my ring. It can have everything else in my life, but I will not let it rule me.

15 comments:

  1. Beautiful, Jo.

    I love your heart.

    This post is very profound, honest, and genuine.

    Thank you putting the ring of T1D into words so eloquently.

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  2. Thank you for your words. It is so true.

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  3. =(

    I'm sorry for the burden your whole family has had to take on, but you do a beautiful and wonderful job of taking care of Elise, Mattias and Fred (and Seven!). You are amazing, and I cannot look up to you any more than I already do.

    Plus, you're a heck of a writer... I may not understand a lot of what you're saying when it comes to the details, but I enjoy the way you write it. The Clarks are always praying for strength for you guys, and definitely for a cure someday (soon!). Love you guys!

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  4. I love this, I can relate on soooo many levels! I have felt the sadness, isolation and the fear that d has brought into my life and yes, I HAVE sat on my sofa many times and cried till there wasn't a tear left in me :(

    There was a time when I thought D was going to destroy me, I went through some pretty dark days. Especially after daughter #2 was diagnosed...I really thought that d was going to win this battle, luckily for me...and my girls...I'm one stubborn mama and I never gave up, and Never will :)

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  5. this was an amazing post! thanks for sharing it!

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  6. Outstanding post Joanne! You said it perfectly and nailed every point. Even though I love having you all who know my troubles it pains me that you all do as well...

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  7. The "lonliness" one got to me the most. I have always been a "social" gal and really...the reason I started Beta Buddies was so that the rest of the world would "get" me . I was feeling terribly alone. Who would've thunk I'd make a whole new posse of friends that really "get" it.

    BTW...not only am I Portuguese, but my hubby and I are huge LOTR fans!!!! We even watch the making of the movies time and time again (actually we were in the middle of that long production when Joe was diagnosed over 4 years ago...I had a hard time getting back to watch it due to the bad memories it stirs up just by the timing of everything).

    Great post, as always, Jo!

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  8. I dont know LOTR... but this is so perfect that I may just have to check it out. Everything you said... I so get it. You know what gets me the most? Not the lack of sleep, not the effect it has on relationships, not the money.... it's the "passing the ring on". I hate that with every ounce of my being. I wish it would forever be "MY RING". Great post, Jo!

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  9. Would you please break this post into a 12 night mini-series? I NEED some new reading material and I have discovered your style really captures my attention (hard to do!) so I gratefully requests you write some more. Please?

    Your words and sentiment dance across the screen. Thank you for spending the time it took to package up the nasty story line and make it a pleasure to read.

    Love you D-sister!!!!!

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  10. Exactly. Perfect comparison! If there was a way for us all to go on an epic adventure to destroy our ring, I would so be there...you know it Joanne.

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  11. Wonderful post. I totally understand what you mean. I am 30 weeks pregnant and I got so frustrated with this stupid disease that I did just sit down last night and had a good cry. It is so overwhelming, especially when you are really putting forth the effort to get it right and it screws with you anyway.

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  12. beautiful post Joanne...i hope you know that i will be your "Sam" along this maddening journey that is diabetes. Love LOTR and am so glad I found your blog...:o)

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  13. You are not alone, that is for sure! I believe someday we will get to destroy that ring...and hopefully before we ever have to pass it on. Until then, you are doing a great job as a mama pancreas.

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  14. Just discovered your blog from sixuntilme and irunoninsulin. And what perfect timing. I am currently re-reading LOTR (also a big fan). It is a really bittersweet analogy. And also thank you for pointing out the struggles that moms go through. I often forget everything that my mom dealt with me when I was newly diagnosed.

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  15. @ Elizabeth - thanks for your comment. I often wonder what Elise will think of how I cared for her years down the road. Did I too a good job? Was I too overbearing? Did I let her be a kid first and diabetic second? I really struggle with these questions.

    I need to re-read LOTR. Or at least find some time to...

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