3:38 a.m.

Bladder calling! My legs are trapped in a web of sheets and blankets, items deemed unnecessary for a sleeping Todd that get pushed to the bed’s center and somehow always end up twisted around me like a boa constrictor. To make matters worse, the cat is sleeping at my feet, further restricting movement. A handful of silent profanity later and I’m back in bed, trying to rearrange the bedding without waking Todd.

My feet are hot. I still have ¾ of the bedding on my side so I can’t get my legs out without considerable yanking and pulling the covers away from my body. Finally, I manage to get one leg cleanly out. Oliver decides to leave now, pulling the bedroom door open with his paw, and disappears down the hall. I rearrange my pillows, lay my head down and stare at the red numbers on my alarm clock. 3:52.

And now I’m awake. I take a deep breath and close my eyes, willing myself not to start thinking. Please don’t think. Nothing that can’t wait till morning.

4:03. I’m uncomfortable. The bad elbow is aching, so I roll over to my left side, except that this means my legs are back under the quicksand. Another deep breath. I can do this.

A few minutes later 16 pounds lands behind me on the bed. Oh good, Oliver is back. Except that he is now kneading the covers. Lie the fuck down! I want to hiss at him, but by this time I’m sure Todd must be awake and if we start talking to each other that’ll be it. Finally he is sufficiently satisfied with his work, and lies down right up against my legs, effectively immobilizing them. RIGHT back where I started. Dammit.

He weighs sixteen pounds. That’s more than the turkeys I bought for Thanksgiving. He weighs more than a Thanksgiving turkey. I really wonder if he should be on some sort of diet. The vet seemed unconcerned at his last appointment. He’s so sweet. He’s been exceptionally close to me of late. Probably because it’s cold out now. Selfish little bastard.

But I love him more than he’ll ever love me, and I don’t quite care. I’ll keep loving him, and cleaning his box, and thanklessly feeding him at the crack of dawn. And pray he lives forever. Because I just can’t say goodbye to another animal. Oh lord, why am I thinking about the cat’s mortality at 4 o’clock in the morning?

V and I saw a cat at Petco that looked just like him. Wouldn’t it be cool to have two identical cats? No. No, I will not adopt another cat.

I think maybe I should write something about Thanksgiving and our trip to Costco. Nah, maybe not. What’s new about an angry old lady pushing her monster-sized shopping cart against the flow of traffic, giving the death stare to everyone in her path? Nothing terribly interesting happened on Thanksgiving either, other than me accidentally dumping roughly a quarter cup of garlic powder on turkey #2. You know Todd actually asked me if I at least washed some of it off? No, I did NOT. What’s wrong with a little extra garlic?

I really, really need to go back to sleep. In two hours I’ll be up for work. We have no appointments scheduled, but that will change at 8:01. All the stockings for our Secret Santa are up in the break room. What the heck am I going to put in mine? Still being the new kid, I was hoping to at least get someone I knew a little bit better than I did six months ago. Well, that kinda worked out, in both a strange and daunting twist of fate. I’m both glad I got her, and a little intimidated too.

I have reports to work on today. I wonder how many things I can check off my list this morning?

I can’t believe Christmas is coming. What am I going to get for Opac this year? I’ve already got V’s handwritten list. She’s thinking ahead for once. I hardly spent any time with her on Thanksgiving. Ah well, she hardly seemed to notice since my mom was there. I love how the kids love my mom. It reminds me of  Nana, all the time I spent with her.

When are we going to get our tree? I’m not ready to put up a tree yet. Todd’s birthday is coming up. I’ve got to start planning that. Haven’t planned an open house. Probably not going to do it this year. People are always too busy. Not feeling it this year.

Damn, my elbow hurts. I’ve got to go see the chiropractor on Monday. He told me to take ibuprofen at bedtime and again in the morning, but I think I forgot last night. He also told me to ice it. I hope he doesn’t ask if I did.

Is this what aging really means? That everything hurts all the time? Bed is supposed to be a sanctuary, but at some point the body can’t take another minute of lying down. WTF is that? And my knee still hurts. Of course it does. I have mild degenerative joint disease in it. If this is what mild feels like, please just take me out behind the barn when I reach level 3. I don’t know how people with chronic pain do it.

Everyone I’ve seen in my doctor’s office just keeps prescribing me drugs. I don’t DO drugs. I don’t want to take pain pills to cover it up, I want it GONE. At least my chiro and I are on the same page. He’s a healer, not a cover-upper.

Maybe I should start doing yoga. I need to get that mat I bought 8 months ago out of the corner of my bedroom and blow the dust off of it. And speaking of dust, I need to clean the blades of the ceiling fan.

Why am I doing this at 4:30 in the morning? Why can’t I just go to sleep?

 

 

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Where I’ve Been – October/November Edition

Today is a quiet Sunday. I’m alone in the house. The kids are away and Todd went off early to finish a deck, because working 60 hours a week teaching and serving on several committees isn’t enough to keep him busy. I woke at 6:40 this morning, because that’s what it means to be OLD. I know this because my 91-year-old grandmother goes to bed around 6 every night and wakes up at like 4 a.m.

Now my soul is leaping out of bed like a deer, dragging my body out like an F250 dragging roadkill behind it. I can’t stay awake at night anymore, and I’d like to say that it’s okay but recent sarcastic comments from my husband are spoiling my delusions.

Anyway. I got up at 6:40 this morning because my bladder. Another happy development to the process of aging gracefully. But as I am forever the optimist and always counting my blessings, I won’t complain since it could be worse – like the inability to control the timing of the large intestine, which I vigorously pray isn’t hereditary.

So I woke up early on the ONLY day I actually get to sleep in with the worst kind of headache – the kind that hurts far worse when lying down. A half-pot of coffee, two loads of laundry, and another useless attempt to remove adhesive from my kitchen floor later, and I’m trying to convince myself that it’s Sunday and I can skip the housework and treadmill and go back to sleep. It’s hard to maintain the underachiever of the household title. I don’t know why my motivation to get stuff done is higher on weekends, but this is bullshit.

Underachieving aside, since my last Where I’ve Been post Opac’s football season came to an end with a breathtaking 1-9 record. I ran Veruca to softball practice two nights a week and attended all but two games. I have no idea what their record was. V is a born athlete and improved her game and gained unexpected status as a great catcher. She takes the game seriously, got frustrated with the girls who didn’t, and now wants to do travel team next Spring. On that note, her Little League team won the first place title last Spring and she now has a plaque in her name.

Todd and I attended the 16th birthday party of our neighbor’s son – a motorhead of sorts who also loves Mustangs as much as we do. He has a “car show” with a plethora of old cars including his own vintage Mustang and Todd and I drove our collection up there for the occasion. And then there was The Cruise. Everyone jumped in a car and we cruised around our area, ending at an ice cream shop before returning to the party. Three of the girls jumped in the convertible with me and the girl riding shotgun tuned the radio to all sorts of 80s (!!!) music and the three of them were loudly singing along. Fully enjoyed my middle-aged self, even if it was somewhat tempered by my anxiety over the alarming level of the gas tank.

I had multiple fun trips to the dentist last month, which I mentioned before. I had my mammogram, which was also fun because how many body parts can you actually watch flatten down to an inch without passing out?

I’ve been happily working extra days and realized how much I want to not be home on weekdays anymore. A year ago it was a daunting thought – how to go back to work full-time and manage our lives. I’m so glad I got the opportunity to get the part-time job and then put in so many extra days. We made it work. And I’m ready for more.

In true V fashion, Veruca decided she wanted to go to her bff’s neighborhood on Halloween night. Another big Letting Go moment for me. So I dropped her off with her meter and a handful of hard candies, although who was I kidding? I knew she’d be snacking from her newly acquired loot. Her cell phone was fully dead, so she had no phone with which to reach me or I her – another moment of OMG-I’m-going-to-hurt-you. But – I let her go anyway and entrusted her to the higher power.

Meanwhile, back at home, I turned on the porch light and waited. And forgot Sabra, who barked like a ferocious beast safely from two rooms away when the first doorbell rang. I handed out candy to the little girls who were intuitively not afraid of my doggie, and then parked Sabra’s pansy-ass in the bedroom with the door closed. Waiting for trick-or-treaters in my neighborhood is like waiting for water to boil, so I decided after the 3 masked boys (who were no strangers, btw) left that I would just leave the basket on the porch and go sit on the couch. Soon after I heard a ruckus and they were back and, as I watched from the window, rummaged through the candy and took more – but left behind candy from other houses. I had to laugh. At least they left something behind. And admitted to it, on the bus the next morning, to V because they’re all friends.

Opac turned 17 at the end of October. He and I planned to go to New York for the day, but the weather wasn’t very accommodating so we bagged it and went to Five Guys Burgers and Fries. Since football season ended he’s been eager to get behind the wheel, he says because he wants senior option next year but I think it also has to do with someone something else.

So Wednesday I sat in the passenger seat while he drove us into town. It was okay. I was okay. Until he approached the left turn back into our development at the breakneck speed of 35 without braking. Apparently Todd heard about it, because I was instructed not to grab onto the door handle “like that” “when your son is driving” because I’ll make him nervous. Fine. Next time I’ll just freak out after he mows down the neighbor’s tree.

Happily, Neph made an appearance on the Sunday after O’s birthday, to bring presents in a bag that he’d accidentally spilled Chinese food in (only Neph, I swear), and then overtook the kitchen like the good old days, fixing himself a pannini from the leftover cold cuts and lox. Got leftovers? Have Neph.

Other things:

Painted the guest room and subsequently developed a sore arm, and soon noticed a large swelling on my elbow. Had an x-ray and guess what? Nothings’ wrong – just minor osteoarthritis. Fuck middle age.

I went back to the chiropractor for an adjustment, thinking my neck is feeling great but something is causing these daily headaches, and now he’s focused on relieving the pain in my elbow.

We had a our annual JDRF fundraiser at the restaurant and I gave my one annual public speech, which this year (I think) went far better than last year’s alcohol-laced debacle, which I thoroughly owned and apologized for this year.

Todd, who loves me more than I sometimes deserve, went over to the place to check out the giant metal chicken I was so excited about, ‘cause he fully intended to bring that bitch home and surprise me when I got home from work. $225. Guess what? She’s not living here.

We had a long overdue date night at Iron Hill Brewery, which was lovely and was also my first drink in nearly 3 months. I was serious about giving up drinking, and I seriously lost 11 pounds to date. Yesterday morning I was down 13 pounds, but that could be blamed on the previous day’s unintentional diet of only fruits and vegetables, which I’m sure was subsequently undone last night at my cousin’s wedding where I decided one glass of the house wine (which turned into more – the tally still under dispute with Todd) wouldn’t hurt, and no doubt caused the monster headache this morning.

But who doesn’t love a wedding? I had a great time. I used Rent the Runway again, another Marchesa Notte, which was lovely but difficult to dance in during “Shout!” The sleeves don’t allow much give in the upward direction so now I have the cocktail dress equivalent of rug burn on my shoulders. I danced the night away with family and friends, including one new friend who proclaimed himself the choreographer of our little circle and soon we were leading the congo line and generally making a fantastic spectacle of ourselves while the millennials sat at their tables looking on like spectators at the zoo. Though I only expected to dance the slow dances with Todd, we had a fantastic time dancing to other songs like a pair of handicapped ballroom dancers.

Thanksgiving is a mere four days away and I forgot to get the turkey out of the freezer until this morning. If you’ve ever bought a frozen turkey, you know that thing is still gonna be frozen on Thursday morning if it hasn’t been in the fridge for at least a week. If there was ever a power outage in July, we could keep the insulin cold for two weeks in a cooler with one frozen turkey.

More to come.

Type 1: Know the Signs!!

It’s National Diabetes Awareness Month…

The Tara Chronicles

Lately it seems Type 1 diabetes has been in the news, the worst kind of news:  the reports are of new cases only diagnosed after a child has died.  It seems implausible to me that this could happen, and I really don’t like to focus on the negative of anything, but the fact is… it has happened.  How could it get that far?  And more frightening of all… how could a physician, any physician, miss the signs?  Or, at the very least, consider all of the possibilities?  That just one finger stick and a tiny spot of blood could rule out this chronic and debilitating disease?

And this is why we “D-parents,” as we often call ourselves, are so eager to educate and get the word out.  We don’t want to hear any more tragic stories of diagnoses that, had they come soon enough, would not have ended this way. …

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10 Years of Diabetes

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V’s 10-year Lilly Medal

Ten years ago, on June 17th, I went to sleep on my last night of uninterrupted sleep. Ever. Ten years ago my 2-year-old daughter woke up lethargic and drowsy. Ten years ago I drove her to the pediatrician, who took one look at her finger stick and sent us straight to the ER.

Over the last ten years…

My 2 year old was diagnosed with Type 1 diabetes and DKA (diabetic ketoacidosis). While “only” 416, her blood glucose was four times the normal level. She spent 8 hours in the ER, receiving her first dose of insulin and getting stabilized, before CHOP’s transport team picked her up. She spent a total of five days (two in PICU, and 3 in endocrine) in the Children’s Hospital of Philadelphia.

She started with multiple-dose injections of fast-acting (Novolog or Humalog) and long-acting (basal – known by Lantus or Levemir) insulins for the first year. It’s not easy to give injections to a two-year-old.

At age 3, she got her first insulin pump from Animas. At the time we lived in PA, and our primary insurance paid only $1,000 of the nearly $6,000 pump. Medicaid paid for the rest. It’s not easy to insert infusion sets into a three-year-old.

She has endured over 50,000 finger sticks, roughly 2,190 insulin shots, approximately 1,700 site changes for her pump, and 10 complete metabolic panels. It’s not easy to get a small child to do all of these things.

We’ve been told a cure is only “five years away.” Several times.

We’ve walked in JDRF walks, attended one gala. My mom, her restaurant and her wonderfully generous guests have raised over $10,000 for the JDRF in the last 3 years.

I’ve “met” dozens of fellow moms and dads and other Type 1s. Whether face-to-face, a phone call, or just a click away – they are ALL valuable to me. I can’t imagine not having this support.

She was diagnosed with  hypothyroidism – diabetics are more prone to additional endocrine disorders – three years ago, and has added another medication to her arsenal. There are more blood tests to monitor this.

We moved out of state and into a new school system – nervewracking in itself but magnified by a child with a life-threatening disease who requires extreme vigilance away from home.

I wake two-three times a night to check her blood sugars, to make sure they don’t go too high or too low. Well, except for the nights she spends with her dad… though I still wake up spontaneously around 3 a.m.

I participated in the development of my state’s newest Guidelines for Diabetes Management in Schools, which was recently released. This was huge. I’m grateful for the opportunity to contribute to something so important.

I have fought countless battles with her over shots, pump set changes, and food.

I’ve let her go. This is the biggest development in our ten years on this unthinkable journey. I’ve let her go to do things and go places where I’m not constantly “helicoptering” and trusted that she’ll do okay on her own. This is a process that will probably never end. The worry will never go away.

Ten years later…

Children and adults continue to be diagnosed with type 1 diabetes with no definitive answer as to why. Several children have died due to undiagnosed diabetes, mistaken for the flu or other illness, and discovered in DKA (extremely high, life-threatening blood sugars) and too late. Also, people with diagnosed diabetes can and have died from both extremely high and extremely low blood sugars.

We in the diabetes community continue to struggle with the stigmas and misconceptions surrounding the disease, which is often confused with Type 2 diabetes and the subject of many a misplaced joke.

CGMs are widely used today, which allow a virtual window into the minute-by-minute changes in blood sugars. And – they can be connected through the cloud to parents’ cell phones, so those numbers can be seen in real time whether they are away from you or just down the hall. V refuses to use this because it requires another “site” for a needle.

The Artificial Pancreas and Bionic Pancreas are systems under development and currently being tested that will ultimately manage blood glucose levels without constant intervention and monitoring by the patient.

At least two organizations are working on cell-pouch technology which would introduce a semi-permeable “pouch” containing insulin-producing cells (beta cells) which would  effectively respond to the individual’s blood glucose levels, and ultimately eliminate the need for insulin. This, too, is in clinical trials.

Veruca, at age 12, has no memory of life before diabetes. But 10 years later, she “hates diabetes.” She just wishes she was “normal.” “Why doesn’t O have diabetes?”

Ten years later, she counts carbs and boluses for them. She knows how to change her sites, even though she still prefers I do them. She is more independent than ever with handling her diabetes, and giving me some confidence that she’s “got this.” At least right now.

She still sneaks food or eats without bolusing (giving herself insulin to cover it). This will be an ongoing battle with her. She is easily annoyed with my constant nagging about testing and bolusing, and eating things without doing those things first. This will be an ongoing battle for us.

Ten years later…

We’re still waiting for The Cure.

**For more information, the Diabetes tab above contains previous posts and background.