Dear Usher and The Diabetes Community…

Wikipedia, courtesy of ©Alphonse Photography

Wikipedia, courtesy of ©Alphonse Photography

Usher, a music celebrity and judge on The Voice, revealed yesterday that one of his sons had been diagnosed with Type 1 diabetes in the last year. The Diabetes Online Community was all a-twitter at the news and my news feeds on FB were clogged with “Hey, look at this interview!”

Dear Usher,

Diabetes sucks.

Everyone thinks they know what it’s all about, but unless you’re part of a family impacted by this disease, it’s a soundbite and an “Oh, I’m so sorry to hear that,” before moving on to the next news story. Thank you for sharing an intimate part of your life with the general public and talking about making sure your child eats healthy meals.

You will, I have absolutely no doubt, be contacted by more than one diabetes organization asking to be a spokesperson for the cause. A famous person is always good for a wave and a smile on the stage, and a famous person with a connection to diabetes? Booya. They will want to you rally around diabetes research and a cure and raising diabetes awareness.

How about you focus on raising your children instead?

There will be plenty of time to advocate (if you want) in the future, but you’re still in that “What the hell happened?” phase of the disease. In addition, you’re also dealing with a family that does not live together, so factor in an ex-wife who I’m sure is just as worried about her children as you are, and there will be arguments over his care.  Teach your child with diabetes to be strong and self-sufficient and your child without diabetes to be understanding and compassionate. (By the way, if you don’t think his brother isn’t impacted by this, think again.)

Diabetes isn’t going anywhere. It will still be here if you want to talk about it. Look, other famous people have taken different routes in advocating: Brett Michaels and Mary Tyler Moore are solid advocates (and even Robin Thicke has gotten into diabetes fundraising – his brother is T1). Paula Deen admitted she was Type 2 when she could make money off of it. Tom Hanks mentioned it once on late night television that he has Type 2, but hasn’t said a thing since. Hell, Halle Berry won’t even admit she has diabetes anymore.

So, for now, learn all you can about this disease. Send your ex-wife and kids to Friends for Life this summer. Do what you can to keep him safe and feeling loved and supported. Make sure he knows that he did nothing to get this disease. I’m sure that you’re already doing all of this, but make sure that you are supported, too. Parenting is hard enough, but parenting a child with diabetes is going to be a whole new ball of wax.

If you need the Diabetes Community, online or in person, we’re here. There are a lot of great people who would be willing to help, famous person or not. You’re a parent of a child with diabetes. You’re part of that club that no one wants to be in.

I wish you the best. You’ll need it.

Sincerely,

Christel

And for the rest of us…

Dear Diabetes Community,

Remember The Diagnosis? Those days and months following the game changer of your life? It was a rough and heady time, with so much to learn and understand. After 31 years, I’m still learning new things about this disease.

So, please… back off on Usher and a crusade to have him become the beacon of advocacy for diabetes. He was brave to mention it openly. Don’t expect him to rally the troops and become a mouthpiece for organizations. Let him decide for himself, on his own terms, if he wants to be a part of our community at all. (We can be a little pushy at times…)

Nothing has changed since yesterday, except eighty people got The Diagnosis. Today, eighty people will get it. Tomorrow and the day after… He, despite being a celebrity, is no different. He is a parent of a child with diabetes.

While you think he may be able to reach so many people to raise awareness and money for diabetes, it should be his decision… and his family’s decision to become the poster family and the center of attention. There are other famous families who are already doing a spectacular job of that. And there are also families who are not quite so famous who are already doing a spectacular job, too.

Diabetes isn’t going anywhere. Neither is the Diabetes Community. We’ll be here if and when he wants to join us.

Sincerely,

Christel

Sometimes It Is My Fault…

Minolta DSCIt was an idyllic day yesterday. Good cups of coffee, a happy daughter, jovial husband, and a trip to the park. The light breeze complimented the sunny warmth and I felt…content.

“You want to go get some ice cream?”

I like ice cream. With some foods, I never quite know what will happen with my blood sugar (i.e. pizza or a bagel), but I SWAG (Scientific Wild Ass Guess) for ice cream with a confidence that I rarely have with other sweets. So, the answer was a resounding yes and with The Kid firmly set on John’s shoulders, we marched a block to the local ice cream shop.

Peanut butter fudge ice cream with peanut butter sauce. Small cup. BG was going up a little (Snacks at the park – Pirate Booty), but manageable. I dosed and enjoyed every minute of that peanuty goodness. We walked back to the car, chattering away about birds and cars that go beep. I checked my graph on the Medtronic MiniMed 530G and it was stable.

The freefall happened within 20 minutes, and it was my fault. The idyllic day called us outside and an impromptu walk around our neighborhood. The magic number said 173 mg/dl with two arrows pointing down. We weren’t going far and weren’t going for long. A casual meander. Fifteen minutes later, it said 82 mg/dland I was not feeling content anymore. We got home and as we walked through the door, the alarm started to chirp. BG 72 mg/dl and falling. Meter said 62 mg/dl and I said juice. Drank it. Felt better.

It was my fault that I didn’t suspend the pump. It was my fault that I didn’t check 15 minutes later. It was my fault that I snuggled down into the couch and began to watch TV. I got sleepy. Thought I needed a nap. Stood up, waved at John and motioned to our bedroom, mouthing that I was going in.

Did I check before I went in? Nope. But the alarm kept going off on my pump and I ignored it. The threshold suspend feature kicked in and through my haze, I realized that this was not a drill.

I vaguely remember wandering into the kitchen, walking past my family and pouring myself a glass of juice. I was intent on getting “just eight ounces” into the cup, holding it up to analyze my measuring capabilities. I didn’t guzzle it down, but casually sipped at it as if I was at a cocktail party and didn’t want to pay $10 for another drink. John’s voice was fuzzy…or was it me that was fuzzy?

“You OK?”

“Oh, yes. I’m fine. I’m not fine. I’m low, but I’m fine. I’m drinking my juice and I’m going to be fine.”

He knew that I wasn’t fine. He verified that the pump was still suspended and told me that he’d come back in and check on me in ten minutes. (He checked on me in five minutes, but was in the next room in case I needed him.)

I drank my juice. I ate some things. I came up slowly. I shuffled past my peeps and back into bed, mumbling that I was tired but my blood sugar was coming up.

And up it did. You know the drill. Overtreat. Bounce. Soar. Dose a few units to stop the rise past 400 mg/dl.

When I went to bed, my blood glucose was 132 mg/dl.

Threshold suspend happened again around 2am. 54 mg/dl.

It was my fault. I take blame for this one for my choices of nourishment and my failure to check. I thank the pump for catching not one, but two sucky hypoglycemic reactions in twelve hours. (And yes, I know about the increase of more hypoglycemic reactions after a serious low. It’s my fault that I didn’t take more precautions when coming down.)

So, this morning, I’m running on fumes. And a BG of 97 mg/dl.

This disease is not my fault.

My choices are my own, and when they’re incorrect and cause issues with my disease…

it’s my fault.

 

Diabetes Hurts

1441012_62476745Diabetes hurts.

I’ve never heard anyone describe injecting insulin as graceful or gentle.

The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.

If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.

Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.

Diabetes hurts.

Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.

Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.

Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.

The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.

You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand.  But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.

No one said it would be easy. I knew it would be hard.

But no one told me when I was diagnosed that diabetes hurts.

 

 

 

A Beeping Mess

headphonesI’m a beeping mess right now.

And beeping is not a substitution for an expletive, although it could be. Since my trial of the Medtronic MiniMed 530G with Enlite, I’ve become my own electronica band, beeping melodically throughout the day and night. No rhyme or reason, thus no rhythm at the beginning, but I’m starting to see some trends.

The MiniMed 530G with Enlite has a unique feature beyond the Threshold Suspend (The pump suspends if the Enlite sensor says your BG reading is below your “low” threshold.). It has a “predicative high” or “predicative low” setting, which will warn you if the algorithm believes you are going to go outside of the ranges you have set. When we did the initial setup, I put my low range at 80 mg/dl and my high at 200 mg/dl. (I drop pretty quickly, so I’m trying to catch it before I get to that point where I am not thinking straight and ignore the sensor readings in favor of…well, anything, because I think it my blood sugar will come up on its own while I’m walking around. Hint: it doesn’t.)

It is the new equipment adjustment period or is it my body? The food choices I make? (Pizza, oh pizza… I love you, but that 400 mg/dl? Even my broken pancreas rolled its eyes.) I beep, look at the pump, and it says that a low is predicted, yet less than ten minutes later, it says that a high is predicted. I’m still not used to the arrows that are on the MiniMed screen and everything is pretty wonky overall. But I’m learning, and that’s the point of this trial. I will figure this out.

The accuracy is not really in question at this point. How do I know? Because along with the MiniMed 530G with Enlite, I threw my Dexcom G4 sensor onto my arm on Thursday. There have been several times when both the 530G and the G4 have buzzed and beeped at exactly.the.same.time. If there’s any inaccuracy issues, I’ve found that sometimes it’s the G4 and sometimes it’s the 530G, but neither one is perfectly accurate all the time. Thus is life.

I haven’t had a night in which beeping hasn’t woken me up. The Threshold Suspend alarm has gone off, only to check my blood glucose level and find it to be a beautiful 110. Other nights, I’ve woken myself up and I’m low, except the 530G hasn’t caught it. (Until a few minutes later when I’m standing in kitchen over a glass of juice.) That’s been frustrating, along with the lack of response by the system to recognize that I’m coming up from a low, insisting that despite my canceling the threshold suspend, it throws up another beep and alarm and threshold suspend less than 10 minutes later.

John and I have had several discussions about the “is it me or the technology?” He maintains that it’s the technology, and to a large degree, he’s right. I need to train the technology to work with me… and I am also recognizing that I need to begin basal testing again. (It’s springtime in Paris and my insulin regimen. Hooray!)

I’ll have to adjust the predictive settings as well with the trainer, so that I can cut down on the beeping. I do find that it causes undue stress (and I’m full up on stress, thankyouverymuch) and worry that I didn’t have before.

So, if you need me, just follow the beeping. I’ll be dancing with the glowsticks in the corner.

The Worst Godmother Ever…

1401853_83250194Today is my thirty-first diaversary. I’ve already shared my story about that day and the days to come, but today, I’ll share a different story.

Happy Eleventh Birthday, Colin.

On my twentieth diaversary, the call came in from your mom that she was in labor and that I better get on over to the hospital. She and I had worked together in our twenties and without her and her sense of humor, work would have been dull and boring. She also became quite adept at recognizing my lows and highs, so she not only provided comic relief, but diabetes support too.

I was honored to be allowed into the delivery room on your special day. Diabetes was the last thing on my mind. Your beautiful face was what I wanted to see. I wished for so many happy things in your future.

Diabetes was not one of them.

Yet, the fates would not listen and I’ve been jokingly called the worst godmother ever by your mom.

Despite what anyone may tell you, I did not give you diabetes.

I prefer to think that I gave you my love of bacon and Diet Coke.

We are not related by blood, but we are, in a way. Diabetes is all about blood. Thicker than water, it makes us a family. Bound by blood.

Many of the things I wished for in your future have already come true.

You are a fighter. A charmer.

You are smart. You are a son that makes his mother proud. You are a child that makes his godmother proud.

Days with diabetes are not easy, Colin. Thank you for reminding me to find the joy in everything.

So, I’d like to think that your mom gave me the best gift anyone could get for a diaversary.

You.

May our blood sugars be stable today as we both celebrate our lives.

Much love to you.