One day this month is my 35th diaversary. We don’t know my exact diagnosis date, so I always just pick a day somewhere during the middle of December to observe the demise of my pancreas. Today seems as good a day as any.I find myself with conflicted feelings about living 35 years with diabetes. It seems like such a huge chunk of time. And as I like to say, life with diabetes hasn’t been all bad. I’ve met some of my best friends because of diabetes. Real-world friends. On-line friends. And, perhaps the most dear to me, on-line friends who have become real-world friends . . . . or actually more like family. And even my “twin”. I’ve had some great experiences and opportunities that probably wouldn’t ever have come about if not for diabetes. For all of that, I’m thankful.
But honestly, at this moment I feel the good is no match for the bad. There are things about diabetes that make me so angry. And I’m going to vent them here, today, because I’ve decided after 35 years I have that right. Here goes . . .
Diabetes, I hate that on Sunday morning I was sleeping soundly and in the middle of a dream when I awoke to Pete putting his hand on my back. He explained that I wasn’t moving and he couldn’t see me breathing, so “I got scared and had to make sure you still felt warm.”. That moment showed Dead in Bead is a real fear for my husband, and I despise that.
Diabetes, I hate that 11 year old me had to watch other kids eat cake that I was denied at birthday parties in the days of exchange diets and crappy insulin. I hate that I still carry scars from that.
Diabetes, I hate that every time someone judges my diabetes management, a small piece of my confidence is chipped away. And I hate that every time someone judges someone else’s diabetes management, a small piece of my heart breaks.
Diabetes, I hate that no matter how badly I need to take a break from you, that isn’t possible. Pete and I have talked about giving me a Diabetes Day Off, but I think he’s so afraid of hurting me he just can’t do it. We joke about wanting to
Diabetes, I hate that as a teen I would lay awake at night counting how many healthy years I thought I had left. I didn’t think I had many, maybe 5 or 10. I was sure I’d be long dead by now. I really thought there was no use trying to take care of myself, because complications and early death were guaranteed. Yes, I’m happy I was wrong about that, but I hate that I felt I had no future.
Diabetes, I hate that you make my loved ones worry about me. I also hate that their worry probably runs far deeper than I can even imagine.
Diabetes, I hate the fear you bring to every eye exam and lab test. I hate feeling like I’m always waiting for the other shoe to drop.
In 35 years I’ve built up a lot of diabetes hatred. But, of course, I know diabetes is here and it isn’t going anywhere. So in the end, after I’ve let myself have this good venting session, I’m picking myself up and just continuing on . . . . . .
Powerful words, Karen, and lots of us understand your anger. I've always given thanks that I wasn't diagnosed until I was a young adult and get to skip the childhood/teenage rant. I don't think that my husband could do the Diabetes Day Off either and I would definitely want one of the Nightscout parents taking care of me.
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ReplyDeleteOh Karen, there are tears while reading this. I'm sorry and I would give you that day off in a heartbeat, if I could. I hate that diabetes has done so many bad things to you but I'm glad that it made it possible for us to meet. You are a wonderful person who has done so much to bolster me up, make me laugh and give me hope when I needed it most. You are a shining example of how diabetes can't take a good person down for long. That it's ok to have bad days. That awesome people have diabetes. Hugs to you on your diaversary.
I share your fear and worry about diabetes. However, I celebrate D-Day (or, as you call it diaversary). Just like my 40th birthday was not a celebration of living for 40 years, it was a celebration of 40 years since I was born, my 11th D-Day will not be a celebration of 11 years with diabetes, it will be a celebration of 11 years since I was diagnosed with diabetes. I see it as a celebration because, if I didn't have that diagnoses, I would not have enjoyed all the wonderful events and experiences of the last 11 years. Science may not have found a cure for diabetes but it has allowed us to live (not just survive) with diabetes and that's worth celebrating.
ReplyDeleteI think it's important to acknowledge the good that diabetes has brought into our lives, but it's also important to rant about it.
ReplyDeleteA Diabetes Day off is a wonderful concept, but I don't think my husband could handle it either. He has never been able to even prick my finger for a bg test, he'll do everything for me while I'm driving except to actual poking.
I'm happy to have people like you in my life because of diabetes. I haven't been living with it even a fraction of how long you have, but the encouragement from you over the last 3ish years means a lot to me.
Happy 35... I share your sentiments exactly. Hatred is exactly what diabetes deserves.
ReplyDeleteOn another note, I'm so glad we have each other to help smooth out the rough edges.
I have so many of the same feelings. I was diagnosed at 13 and was told complications were pretty much a sure bet in 10-15 years. Now 27 years later I don't have any major complications but a lot of major psychological damage from that. Thanks for sharing and helping me to know I'm not alone with any of it. Here's to another 35! ;-)
ReplyDeleteOh Karen! I love you! Thank you for expressing the feelings that so many of us share! From one "old-timer" to another, let's keep on keeping on, hold one another's hands when we need support, revel in the fact that 'they' were wrong in terms of our longevity, and truly appreciate the advances in diabetes research and care since we were first diagnosed.
ReplyDeleteOh Man. As a fellow 35-er (35 and a half TODAY actually), I share so many of these thoughts (and anger). I cried when I got to your teenage memories, because those were mine as well. Much love to you Karen and thank you for sharing. xo
ReplyDeleteFirst thought - "Karen's not old enough to have had D for 35 years!"
ReplyDeleteIt's always good to vent - and it helps all of us to know that we're not the only one ready to scream somedays (sometimes, I do scream).
And yes, I'd like to borrow a d-mom every now and then!
I hit my 35 in a few months, too, so this post really resonated with me, Karen. Thank you for being brave enough to share how you really feel about it.
ReplyDeleteBeautifully written, straight from the heart, honest and true.
ReplyDeleteThank you for sharing, for being an amazing part of our community and amazing friend –love you, lady!
your words are so poignant and powerful. thank you for sharing all your feelings here, good and bad. i appreciate your honesty. i hope venting helped.
ReplyDeleteif we were neighbors i would totally take over your D care for a day <3