Wednesday, May 18, 2016

More than numbers - Diabetes Blog Week Day #4

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

More than numbers 

Grace sees the greatest pediatric endo around. She is smart as a whip, funny and knows her stuff. We adore Dr. B in many, many ways. We see her about 2 out of the 4 times we go a year. Otherwise, we see the CDE in the practice. We have one mainstay who is terrific. She's kind, thoughtful, smart and really knows Grace. 

While they are great, I always feel like I am missing something when we go to her quarterly endo appointment. Sure, they weigh her, they take her height, we give blood for her A1C, they check her thyroid, they do all those things that are important. But all those things are one small, small, piece of her care. 

Our endo downloads her OmniPod PDM in the office. She has access to the graphs of her Dexcom, if she has worn it or is wearing it. And faithfully, her endo and her CDE sit down with me and we look at them together. And my eyes want to roll far, far, far back in my head. I almost want to laugh, but I don't. I don't want them to think I am laughing at them, because I am not. It's just we find ourselves in this situation where we are looking at specks of sand in the desert. 

"What happened here on Wednesday? Why the 54 BG"
"Look at this high, why didn't it come down? What did she eat?"
"Thursday had two lows, we should adjust her basals."

Those are the kind of comments that they say. And they mean well, bless their hearts. They do. They want to fix. They want the steady line on the graph, the in-range numbers, the perfect dose for the perfect carb count.

"Grace has dance on Wednesdays for two hours straight with no break. We've already reduced her basal with a temp basal rate for 2 hours, the 54 BG was her coming home, at 9 PM, after dancing a routine for close to two hours. I think 54 was pretty damn good."

"That high was the result of going out to eat with friends. She had the pasta and then decided to eat two more breadsticks, then have dessert. We carb guessed it all and I kissed it up to God. The three hours of getting the high down was worth the night of fun."

"Thursday night she had play practice until 6 PM, then I had to pick her up, she ate in the car, then had to be across town at her dance class until 8 PM. She had a hoagie and some chips, but only ate 1/2 the hoagie as she was full. So, I backed out of the dose by throwing in a decreased temp basal for 2 hours at 30%. I calculated it. It's not her basal that needs adjusting."

Then they just look at me. And each time, they tell me I am doing 'a great job.' And her A1C comes back and it's 6.4, 6.7, 5.9, 6.2. They marvel at a great A1C in a pre-teen. And I smile. They must think I am a freaking rocket scientist. Alas, I am not. I am barely making it through each day.

As much as they want to understand, they do not. I want to give them Grace, or any Type 1 child, only for one week. I want to tell them - "Lead a normal life with this child, and you calculate every dose, work full time, and have two other kids. Make sure she is always in range, never has a low, never has two lows in one day, and most of all, never has a high that refuses to come down. Oh and make sure you always have enough supplies. Be ready to fight the insurance company for everything she needs. Good luck!"

I want our healthcare experience to mirror the reality we are in. I want to talk about the insurance fight for ketone strips and how they can help me. I want to talk about the bionic pancreas and the future of technology in diabetic care. I want to address the emotional needs of caring for a child with a chronic illness. I want them to address with Grace the feelings of having diabetes. I want them to not give a shit sometimes about the A1C. I want Grace's healthcare to address the whole person that she is. And I want to see the desert, not the specks of sand.

Call her diabetic - Diabetes Blog Week Day #3

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

Call her diabetic

I am the parent of one young adult with autism and one pre-teen with Type 1 diabetes. That about sets the tone for this post. I hear a lot of language and names surrounding my children. Some of it is not pretty. I'll forego all the crap that gets tossed at kids with autism (look at me being all people - first in my language) and go straight to the kid with diabetes. Diabetic child. Child with diabetes. Oh hell.

My oldest daughter has had autism since age 2 1/2. She is 19 now. When she was younger, autism was not as prevalent as it is now. We knew hardly anyone who had autism, and no one who was a girl with autism. For most of her life, I referred to my daughter as having autism. And I bought person-first language hook, line and sinker. Refer to the person first, then the disability.

Until my daughter, that is, started telling me that she would like to be called autistic. As in, 'M is autistic.' I would put the words on cards in front of her. "Would you like us to say M has autism or M is autistic." And every time, she would indicate that she would like us to say that she is autistic. My daughter is verbal, and communicates her basic needs and wants. I presume competence with her and believe she has an inner life that is rich and varied, even if it is not outwardly communicated with others, or visual to others. She tells us what she would like us to say, because we asked her.

So, if that is true, why wouldn't it be true of my daughter with diabetes? What would Grace like to be called? How does she refer to herself, when asked? First, not all situations present themselves where she has to explain that she has diabetes. She's not constantly reminding people that she has Type 1 by her language. When asked, it turns out, Grace prefers to be called diabetic. Although, when I asked her again before writing this post, she said 'Exactly WHO would we be talking to???' which is exactly what Grace would say if you knew her. That's my girl. Like, Mom, who the heck are we telling and what do we care?

For me, and for Grace, it's about asking the person what they would like to be called. If you would like me to say you have diabetes, that's fine with me. If you want me to say you are diabetic, again, another win for us both. If you don't want me to say anything at all, rock on with your bad self. If you want me to call you a person with Type 1, then so be it. Let's start asking people what they would like to be called and we will all win.

Tuesday, May 17, 2016

Emotional Toll - Diabetes Blog Week - Day #2

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

Emotional Toll

As a caregiver, it's hard to even think about diabetes and Grace without my head swirling with emotions. And they are not easy emotions, they are the hard ones. And no one ever tells you this as a caregiver. That your life will not only be bolusing, adjusting basals and insurance nightmares, but there will be crying jags and anger. They should really tell us that.

There are times when I think I glide through it all. I don't feel much, just go through the motions of doing. And I think I am fine. I can bolus via the PDM with my eyes closed, knowing how many button pushes I must make to get to a temp basal rate, scroll up through the percentages, to arrive at an 80% increased temp basal for one hour. It's 26.

Then, like water that is heated, it eventually comes to a boil. And it's usually triggered by something I can't seem to control. I can't get the damn high BG down. I can't get the damn low BG up. I can't figure out if the insulin has gone skunky. I am denied what she needs through her insurance. And the water boils. I am angry. Angry at having this damn disease in our lives, angry at having to do do do do do all this. Angry at how much time this disease sucks away from doing other things. 

The water boils when I think about complications. Even with the best of care, and the best of conditions, I know what diabetes long term can do. I read the data. I talk with doctors. The tight control is good for avoiding complications, but we all will lose the bet some time. Our bodies are not designed for the pancreas run by humans. We get it wrong. We make errors. We burn out. And it all has consequences. Every thing does. 

And that makes me sad. I think about Grace and her life being shortened by diabetes and I am filled with sorrow for what she might miss. The moments are fleeting when they come, but they do come. It's human to think about the end of our lives. And it's so unsettling to even begin to think about the end of your child's life. I shut it out when it comes, allowing it to open the door to peek at me, then I slam it shut. 

My brain is often at capacity for all things diabetes. And as I write those words, I imagine that my 13 year old's brain is full too. Always thinking, calculating, always on. I can step away, not think about it. And my child can't. 

To think it's all bad is to only see one side of the coin. The other side is emotional connection and the feelings of being at home with people who understand. That is what gets me through. I have other moms and dads who share these emotions. I have a network of caregivers to reach out to when the storms hit. 

Monday, May 16, 2016

Seven Years In: Riding Shotgun - Diabetes Blog Week - Day #1

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

Seven Years In: Riding Shotgun

I started this blog in December 2009 when Grace was just 11 months into her Type 1 diagnosis. She was 6 years old. At the time, we walked out of Bryn Mawr Hospital, just outside Philadelphia, and I knew not one other soul who had a child with Type 1 diabetes. Think about that, I lived outside the fifth largest city and I knew not one other person who had a child with diabetes.

So I did what every other parent does in 2009, I went online. And I found Kerri at Six Until Me. A woman who had Type 1 diabetes, diagnosed at age 6, just like Grace. It was a window into her world as a grown up. And it connected me. It made me see beyond the 6-year-old Grace, to the young adult Grace, able and well, and yes, still having Type 1. I couldn't see that in the hospital and in the months after it. And then the connections started growing.

And here we are, seven years later. Grace is 13. I still help manage her care, but girlfriend is pretty much on her own most of the time. I check in, adjust rates here and there, handle the insurance and supplies, but I am out of the minutiae of the care. Grace takes care of herself and leads the way in how she wants us all to handle situations and events. She takes control of her care team and lets them know if she needs a nurse for a school trip or not, if she needs to check in at all with the nurse,  if she needs to change a pump she decides when and where, she decides all of it. For most of it, I am out of the picture. And if you would have told me that seven years ago, I would have thought you were crazy.  

So, why am I here, still blogging after all this time? Cause there is always more to learn I guess. There are conferences to attend (CWD) and Type 1 friends to share it with. There are still connections to be made. There are people advancing the cause of diabetes with the bionic pancreas. There is always more to explore about having a child with a chronic illness. We still have to get through all the teenage years, going off to college and adulthood. I look to those who have come before to get a handle on what I need to know. I'm still riding shotgun here on this journey.