I am not a scientist. I vaguely remembered the lessons of Schrödinger’s Cat in regards to thought process and even less in regards to Quantum Mechanics when I was briefly introduced to it in some philosophy class in college. I was only reminded of it while watching an episode of “The Big Bang Theory” (funny ass show btw if you haven’t watched. The bit about the cat is at 2:44 min)
Ok so here is where this is going – I’m sure the suspense is killing you.
Feb 2007 – Sugarboy was diagnosed with Type 1 – this was completely unexpected – the kind ‘of shit’ that blindsides you at 4pm on some idle Tuesday (from Baz Luhrmann’s Everybody’s Free to Wear Sunscreen) – only it was a Wednesday morning – and everyone should most certainly wear sunscreen. Oh here is a link to Baz’s song because its awesome.
July 2007 – Sweetstuff was tested for antibodies at FFL via TrialNet – two months later we got results that said she was positive for 3 out of 4 antibodies. We didn’t pursue further testing because – well because we were scared as shit and didn’t want to put the fear on her and surely lightning wouldn’t strike twice – right? WRONG – keep reading. (I should also note that my Middles was only 5 at the time and chose not to get a huge needle stuck in his arm to be tested. We respected that. Chad and I were both tested and are negative for antibodies.)
April 2009 – Sweetstuff was diagnosed with Type 1 diabetes. Screw you diabetes.
October 2011 – While participating in a JDRF Walk to Cure Diabetes, Middles agreed to be tested for the antibodies. (I can’t recall what his daddy promised him but I can assure you he was bribed.) Up until this point the cat was both alive and dead (and this line makes no sense to you if you don’t know about Schrödinger’s cat – go back and click the Wiki link or Big Bang link). We hadn’t opened the box. Although in truth the cat was either dead or alive before the box was ever opened and not really both alive and dead. I can tell this is gonna get convoluted – stay with me.
Feb 2012 – While at a routine endo visit with Sweetstuff and Sugarboy I was told that Middles test results from TrialNet had come in. He was positive for all antibodies. Frick Frack Fruck.
Basically – we opened the box by having Middles tested. The tests showed my Middles was at high risk for developing Type 1 diabetes. That risk was there whether we knew about it or not.
What did knowing do for us? Well it allowed us to continue having Middles observed. He agreed to a blood draws and Glucose Tolerance Tests every 6 months while we considered additional studies. It also meant putting another cat in a box each time. It also meant (just realized I started two sentences with that phrase – should probably fix that but – whatever) I was in a constant state of worry. I don’t know if I’ve ever told y’all but I do have some anxiety issues. Not the kind that lead me to believe aliens will abduct me (although now I’m thinking about that) but that shit that can go wrong will go wrong. It is an illness that I should probably talk about more because I know I’m not alone. Moving on….
On Tuesday June 22nd, a week after his last GTT and blood work I got THE call. The call that told me he failed the GTT.
fasting blood sugar: 110
1 hour mark of GTT: 239
1.5 hour mark of GTT: 212
2 hour mark of GTT: 207
A1C (don’t let this fool you): 4%
Anything greater than 199 at the two-hour mark is diabetes.
How does he have an A1C of 4% you ask? Because his pancreas is in such disregulation that it doesn’t know what the fuck it’s doing. At times I would randomly check his sugars he would be in the 60s. Other times in the upper 100’s. An A1C is an average blood sugar over about a 3 month period. Enough numbers in the 60s averaged with numbers in the upper 100’s or lower 200s will give a very pretty 4% (roughly over 6% is diabetes). A1C doesn’t mean much other than the pancreas is wonky. (can I use wonky and fuck at the same time to describe his pancreas? – its like Elmo meets Andrew Dice Clay)
So Im a little messed up right now. Im not at my best – in fact I am at my very worst.
Middles will go in for another GTT to confirm – just in case something went screwy with the test. Since we were away in TX I haven’t contacted the other kids Endo yet. I was planing on switching before we left (she – their Endo – isn’t playing nicely regarding getting back on Novalog). I will call her office tomorrow and get her thoughts. Chad is in denial and man or man do I hope he is right. It’s all some big goof up in the lab. I do not want to be 3 for 3 in this game. It isn’t like baseball with 3 up 3 down with my team on top. It’s the opposite.
PS. My friend over at thePerfectD has been writing a post that may or may not include a reference to Schrodinger and his feline friend that may or may not be dead. I haven’t seen her post it yet. We knew we were both writing or not writing a post regarding dead and alive cats. I started a similar post to this one only I didn’t have any results. I was gonna wait for my friend to post first. But since my kid might be number 3 for me I got dibs. Still you should look daily for her post because it will likely be much better than mine and far less convoluted.
Stick With It Sugar 
Sweetie, I wish I could give you a big hug right now. Scratch that, or add this to that. I wish I could make you one hell of a stiff drink right now and give you a room lined with plates and a bucket of rocks and turn you loose to bust out your anger.
I’ll keep my fingers crossed that the cat is an idiot who doesn’t know his head from his tail and your hubby was right. In the mean time, *big hugs*
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One should never trust a cat. Cats are assholes. I mean except my two cats – their cool. I love that my hubby is optimistic. He hates that Im so pessimistic. As far as breaking crap I think I should start my kitchen remodel myself. I would so love to take a hammer to the tile on my counters – that would be therapeutic in so many ways. Ill skip the drink – I know I joke about alcohol but honestly I avoid it when I am really upset. Ive seen what finding solstice in spirits can do to people. I like to have a drink when I am already happy and having fun – its like a happiness enhancer but even then 1 – 2 is plenty.
Thank you always for your support and love. It means the world to me.
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What can I say … I’m trying to find a way to delicately provide both encouragement and sympathy at the same time, but I can’t quite figure out how to do it. Sometimes, when I don’t know what to say, I don’t say anything – but I can’t do that now. I suppose the good news is that there’s not a learning curve to worry about — as Katie wrote in her blog, Diabetic Advocate, when a subsequent child is diagnosed, “you just double the supplies and get in the car”.
No, it doesn’t make it better. But it does make it easier than the one before. And I know you’ve done this before, so I should probably just shut up. (Your blog post makes perfect sense, by the way).
I can only hope and pray that – somehow – this gets easier for you, and for the kids.
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Thanks Scott. Im not entirely sure it gets easier but we do get better and then it seems like its easier. Katie is correct – increase supplies and get moving forward. Thats what we can do, its what we have to do. Not having to re-learn all the mechanics of diabetes care is good. Unlike when I took Spanish (3 times) I got it the first time. I think what is different is learning to let go of the anger each time. I need to find a way to channel my anger, maybe I need to start exercising – that seems to make others happy. I could use a punching bag too. Thanks for commenting – its always nice hearing from you.
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F.Y.I. when I see you in Florida I am picking you up in a huge hug and spinning you around until you or I get really, really sick. Not the coolest news in the world, I am sorry!
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LOL Brian – Im not sure you will be able to pick me up and spin me around but Ill take a big hug for sure, followed by a lifetime supply of Reese’s. All will be well. My kids are amazing and will weather any storm tossed their way. Ill follow their lead.
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Christina,
I cannot get you off of my mind this morning. I am praying for you and your family at a very difficult time. There are many people in the DOC who care for you very much who are here for you.
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THanks Suzanne. I am beyond grateful for you and so many others in the DOC that have been so kind and so supportive. I know all will be well regardless of future tests.
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Oh man, I am so sorry Christina… I try not to think about this happening and it’s one of the reason I’ll probably never test my two littles (right now they’re too young). I always tell people it’s like walking on train tracks with a locomotive bearing down on you. I would rather get hit by the train without knowing it was coming than spend my days walking, knowing that at any moment I’ll get smooshed.
Sending you hugs… Whatever happens, you got this.
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Joanne – your description of walking on tracks is such a great one. Participating in TrialNet is a very personal family choice. I can’t say we would have done things differently if we could go back in time to the first trialnet test with Sweetstuff or the trialnet test with Middles years later. Knowing does suck and my husband and I handle it differently. He stays very optimistic and at times I have been equally optimistic but I tend to lean more on the pessimistic side. Probably because I don’t like being blindsided. Just before my first was diagnosed I was in an amazing place of happiness. In fact the week before I was telling my sister how blessed I was to have such healthy amazing kids. Then BAM. Then before Sweetstuff was diagnosed I was back in a fairly happy place then BAM. I didn’t want to be bammed again so I stayed vigilant. I checked random sugars and took him for more trialnet tests. While the phone call hit me like a ton of bricks it would have been worse – i could be bammed sometime in the future. I still look to my husband for optimism. Maybe the tests he took two weeks ago were wrong. But if not – I want to know and I want to do everything I can to maintain as much pancreas function as we can in my little man.
Still – I respect and support the decisions of all D families. Sometimes knowing is worse than not knowing. Hugs and thank you for your support.
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Oh Christina, my heart aches for what you are going through right now. I pray that your husband’s optimism is on target and that there was a problem with the test. If that isn’t the case, I pray for peace for you and all of your family.
HUGS!!
Lyn
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Thanks Lyn. I do love his optimism. He is a strong and wonderful man that knows staying positive is a good thing. I do pray he is right. I would love for him to be right – it isn’t fair if Im right all the time. 😉
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I definitely waver, but knowing my personality, I’m afraid I’d obsess about it if I knew. As it was I went a little nutso when my second was born and started checking him a few weeks after his birth. As his first birthday approached, I was convinced he was going to be diagnosed (just like Elise). I finally had to let go and stop obsessing. Life has been so much more enjoyable for me since then.
But it definitely is a very personal choice. I’ll probably get tested as will my husband. And I will keep an open mind about the other two as well.
Thanks for your viewpoint!
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You have to trust yourself and be true to what you know is best. There are many who don’t do TrialNet and that is what is best for them. Like I said I don’t know that we would do it over again if do-overs were possible.
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The grace (yes, grace) with which you can so openly and humorously discuss something so deeply painful for you guys is amazing.
What a clustereff.
Thinking of you all and sending good thoughts. ❤
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lol – Grace is not something Ive ever been accused of having – physically or verbally but Ill take it. Thanks Kim. Sad I won’t see you next month but can’t wait to see pictures of baby.
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This really sucks. Ain’t no way to sugar coat any of that.
keep writing, you write awesome.
cats ARE assholes!
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Ya know Scully every time I see your handle I smile. Like seriously you could just write a bunch of random letters and it wouldn’t matter because your handle is so damn cool. Thanks for the kind words though – and the giggles.
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I’m so sorry. We have debated back and forth over whether to have the antibodies test done on our other children but have just not done it yet. Our youngest of 3 is the one with T1d. Our middle got hurt a couple weeks ago and was bleeding..and I took the opportunity to check her bs. It was 176 which kinda freaked me out but it was only about an hour after a pretty carb-y meal so I’m hoping that is ok. I haven’t checked her again since. Denial? Maybe. Maybe I want the cat to stay in the box as long as possible.
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oh Karen – hugs. I have been told repeatedly that it is perfectly fine to have slightly elevated numbers after a large meal. My advice would be to forget it. Stay moving forward and don’t let it haunt you. The haunting is the worst. It doesn’t matter if the kids are tested or not tested I think all D parents of multiple kids worry that another would get it. I wish I was better at the “don’t worry be happy” crap. Shoot I wish I could even whistle it. don’t follow my anxious path. Be like my husband – all is well – until its not – then make it well again. Well his version usually involves harping at me about being pessimistic and is less skippy but its what he means. Im not suggesting not to ever consider TrialNet. The TrialNet studies are extremely valuable for the entire diabetes community but TrialNet knows that it isn’t for everyone and I can’t imagine anyone in the community would ever fault a family for opting-out. Love the opportunistic blood check. BTW – Im still praying for wonky lab results and a pass when he retests.
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I will pray for that, too. Right now.
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I don’t know what to say about D, but I DO know to say that I am happy to have found your blog!
My non-D son and I each have one of the antibodies, and will go for the GTT in July. We’re excited about it because we get a free hotel room in Boston.
I didn’t pause to consider that some kind of news might come out of it. I think they said 1 antibody = approximately 10% chance of developing Type 1 this year.
I am looking forward to reading more of your blog!
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I have heard the same – having just 1 antibody doesn’t mean much. But hey free hotel in Boston – yes please. Plus Im not sure but you likely get a little someth’n someth’n for your time. Middles got $50 each visit. Not that he did it for the moola – but he certainly didn’t turn it away when they handed him the cash. I tried to tell him he owed me gas money the first time and he gave me that “are you off your meds mom” look. I actually don’t take any meds. Not sure why I needed to clarify that because there is nothing wrong with meds and now Im thinking about my rambling and the spider stuff on my last reply to you and wondering if I need meds. (This is all caffeine induced babbling btw)
Glad you found my itty bitty blog. Thanks for all your kindness. See ya around.
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I’m so sorry!!!! It’s one of my worst fears that our other son or any future children will also be diagnosed. There are no words that I can say to make you feel better, only time can do that. Just know that I’m praying for you and your family during this.
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Thanks Mary. You should know that the multiples club is very exclusive and the cost of membership does suck but honestly the members are all fabulous. Still – very exclusive so please don’t spend too much of your energy or heart worrying. Thank you for your prayers and kind words.
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Oh Christina, I’m so sorry.
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Oh don’t be sorry yet. He has a retest and he is studying hard. 😉
trying on my husbands optimism. Its a little big – maybe Ill go into it.
Thanks Scott.
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Oh man. Hang in there Tina. Hang in there Middles.
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Thanks Marie. All will be well and if not I have my hitchhikers guild to the galaxy handy – surely there is something in there about all this.
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Christina, First of all, thanks for following Chronicles Of A Dystonia Muse. My latest post on activism was really for all of us! Don’t I love a woman who uses Quantum Mechanics to explain the craziness of life with chronic illness (for you, in the family). Life with Dystonia is certainly a bout of Quantum Weirdness! -Pamela-
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I thought everyone used Quantum Mechanics to do this. Thanks for visiting again. Cheers.
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I’m just getting a little caught up since I’m new to your blog. This is a hard post – but wow, your kids are so lucky to have you. We decided to not even let the cat in the house so any thoughts of having a second went out of the window once our daughter was diagnosed. That was hard for my hubby, but between my own T1 and then having another PWD in the family he knew that I had all that I could handle — no more cats. Thanks for your honesty & hang in there.
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Thanks for visiting Lesley – and man did you pick a whopper of a post to get to know me. I was a little bit cussy that day (I mean more so than other days). We have not had my Middles confirmatory GTT yet. I check him randomly and his numbers are ‘mostly’ in range or at least not – Get to the hospital right now – numbers.
I’ve met a couple other parents just like y’all that made the same decision you and your hubby made, I wish I could direct you to their blogs but they don’t and are not involved in SM. It isn’t for everyone, not that I don’t keep encouraging them.
Looking forward to reading more from you – not here – on your own site. 🙂
Thanks for for your thoughts and encouragement.
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