WKRP in Cincinnati…

ImageEvery 3 months Frankie goes to see his Endocrinologist at the Joslin Diabetes Center. He gets his A1C checked-which is a check of a drop of his blood,  and results in a number -reflecting how controlled, in the last three months, his blood glucose levels have been. Frankie’s aim is to be a number between 7 and 9.

We have an appointment coming up this week, and I can already hear the DJ from that old TV show, WKRP in Cincinnati (remember that show?), saying “Give it to me straight Doctor I can take it!”  The truth is-I can’t take it! Try as I might, I can’t help thinking of this as a pass or fail test. If Frankie gets a good number–Hooray–gold star! If Frankie gets a number out of range—BOOOO—FAIL!

I know, in my head, that this is not how it works. With Type 1 Diabetes–you do the very best you can everyday to balance insulin doses with your carb intake, activity level, stress level, growth pattern, and the rotation of the earth on it’s axis. Staying in range is a crap shoot-especially for a kid-who is constantly growing and changing- both inside and outside his body.

Ohhh, but my heart! My heart wants that A1C number to come back in range SOOOOO bad! I want all the math problems solved, carb counting, regular glucose tests, and positive attitude to have mattered! I want all the work my son does regarding his diabetes, work just to stay alive, to be rewarded! I am a Mom-who wants my boy to get that gold star- because he works so damn hard for it everyday!

Frankie, as with all things Type 1 Diabetes, rolls with it. When his A1C comes back out of range, he talks to his doctor about changing his insulin ratios like he is talking to his friends about legos. Frankie doesn’t let the A1C be a ‘make it or break it’ deal.

So, as we go for our 3 month check up, I gear up, get mentally ready. Here we come Cincinnati–“Give it to me straight Doctor–If Frankie CAN TAKE IT–I CAN TAKE IT!”

 

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A letter to friends…

Dear Friends,

Remember me? I am the curly haired girl you used to have coffee with, meet for lunch, and oh-yeah-I used to return your phone calls.

I am writing to tell you-I am really not a horrible friend. It’s been a long time, I know, but back in August 2010-I took on a second job-really all of us in our family did. We didn’t apply for it, we don’t really want it, and here’s the kicker–we have to pay for the job–not the other way around!

I am holding the position of CEO of Type 1 Diabetes / Chatham Drive Division. I am responsible for various mathematics equations, pharmaceuticals needed and how to use them, continuous monitoring of type 1 (both the day and night shifts), keeping logs, being up to date on the latest technology, all medical requirements, ordering of all supplies needed, and public relations-to name a few.

The funny part is -I had no skills for this position -I have totally been winging it! This job consumes pretty much all of my time-hence I don’t get to see you much anymore. I do have assistance. My husband, daughter, and especially my son are all working for Type 1 too. They handle monitoring while I am at my ‘real’ job, you know-the one that pays me. They also handle the food supplies that are required-including food research and purchasing. My husband is the supervisor of The Getting Extra Money Department- needed to pay for this new job-working overtime at his ‘real’ job–you know- the one that he get’s paid for. My daughter is in charge of the Continuous Worry Department. Yes, I know she is quite young for this responsibility but she wouldn’t let any of the rest of us take it on like she does. My son has the worst job of all-Owner of Type 1/Chatham Drive Division. He has to do all the jobs we do plus inject himself with medication, make himself bleed, and live with type 1 -24 hours a day, 7 days a week, 365 days a year. He is our boss-making sure we all do our jobs. When we don’t do our jobs right-he passes out, gets very sick, has to go to the hospital.

We all get vacations-except my son. He never gets a day off, break time-nothing. He goes away to type 1 camp every summer for a week. That’s when the rest of us get vacation. We don’t have to do our jobs that week-because people at the camp take them on for us-while except for the Worry Department work-we still have to do that during our vacation-but the workload is smaller that week. My son is still doing his job at camp–and learning new ways to be a good owner of Type 1.

We are told that we can retire from these jobs someday–all of us but my son. They say when he gets older-he will do all these jobs himself and won’t need us, the T1D staff, to work anymore. We say-we’ll see it to believe it-especially the Worry Department-I don’t see any of us retiring from that.

Anyway, I want you to know that I still think of you, all the fun times we have had, and I miss our coffee breaks, lunches-all our time together! If we ever do get to retire, like they say, I will call you up and maybe we can get together?

Wishing you all the best,

Patty

The best made plans…

Some call it Murphy’s Law and some call it fate-but we all know what it’s like when the best made plans fall apart in the final hour. We ask 30 family members over for the Thanksgiving of the century and the oven breaks just as you are ready to put the turkey in or you spill your coffee down the front of your shirt just as you get to the office. GRRRR.

That is how it is in life with type 1 diabetes sometimes. Take this weekend for example. My daughter planned to celebrate her birthday with a sleepover at our house with her friends. We bought the food, decorated the house, and planned some fun party games. All is well until 3 hours before the party when diabetes decided it wanted an invite! That is when my son announced he “felt funny” and a check of his glucose level showed a pretty high number and a check of his urine showed high levels of keytones. GRRRR!

This is when it get’s hard to deal with. You ask yourself–do we cancel the party? You know your daughter will be crushed–but your son may get worse and need medical attention. What to do?

In our house-we decide to carry on. My husband takes control of the uninvited guest-Type 1 diabetes and I handle the 6 giggling girls. Our daughter asks why her brother isn’t coming out to eat cake, play games, and make smores. “Is he sick?” she asks, eyes filled with concern. “No-just wants to hang out with Dad while you all have some girl fun.” (A little white lie but it’s for a good cause.)

My daughter enjoys a great party, and my son’s BG level and keytones come down with lots of water and insulin.

Sometimes diabetes wants to make you stop, wants to put a wrench in your best made plans. Sometimes-diabetes gets to do just that–and it hurts when that happens. This weekend Diabetes just wanted to remind us–hey I’m here–as if we ever forget!