First Scheduled Diabetes Depression Day

I've attached an article from expert Joe Solowiejczyk on why he schedules his diabetes depression days. I heard Joe speak a year and a half ago & he told us about this. I'm not sure that Andrew has really cried about having diabetes since the hospital when he asked "How long will it take to go away?" or , "Am I going to die?" until a couple weeks ago. He is tired of the constant pricking, counting, injections, etc., but he is mostly tired of being left out even though we work so hard at it not happening and having to answer so many questions (mostly to new baseball teammates). So we decided to schedule our first "Diabetes Depression Day". He looked at the calendar & chose this Wednesday, May 5th. He is actually excited about it! Here is the article: I copied from http://www.animas.com/connect/insulin-pump-experts?topic_id=19

I schedule my "diabetes depression" days! By Joe Solowiejczyk
Yup-that's right, I schedule my diabetes depression days! I've had diabetes for 48 years now and I've learned that getting depressed about having it is just part of living with it – successfully! I used to think that in order to consider myself as handling it "okay" I wasn't supposed to complain or let anyone know that I was having a hard time. And the difficulty I'm talking about is not anything specific, just tired or exhausted from always having to be on top of it and doing the "right thing."

Don't get me wrong – I don't walk around all the time feeling angry, sad or sorry for myself because I have diabetes. I absolutely love being alive and am grateful that I have diabetes and not some other condition that would be debilitating, and that would have prevented me from doing all the things I love to do – travel, cycling, camping, cooking and eating! What I'm saying is that managing diabetes on a daily basis, and managing it well is exhausting:

Checking my blood sugar
Counting carbs and bolusing,
Trying to make the right dose adjustments for corrections AND not overeating during those lows that we get late at night (you know, the ones where you say to yourself as you're walking to the kitchen at 1am that you're only going to have 1 cup of juice… you're only going to have 1 cup of juice… you're only going to have 1 cup of juice … and when you get to the kitchen, the Cap'n Crunch® grabs you by the the neck,throws you down to the floor and shoves 5 bowls into your mouth!) It takes a lot of time,effort and energy.

Yup-that's right, I schedule my diabetes depression days! I've had diabetes for 48 years now and I've learned that getting depressed about having it is just part of living with it – successfully! I used to think that in order to consider myself as handling it "okay" I wasn't supposed to complain or let anyone know that I was having a hard time. And the difficulty I'm talking about is not anything specific, just tired or exhausted from always having to be on top of it and doing the "right thing."

Don't get me wrong – I don't walk around all the time feeling angry, sad or sorry for myself because I have diabetes. I absolutely love being alive and am grateful that I have diabetes and not some other condition that would be debilitating, and that would have prevented me from doing all the things I love to do – travel, cycling, camping, cooking and eating! What I'm saying is that managing diabetes on a daily basis, and managing it well is exhausting:

Checking my blood sugar
Counting carbs and bolusing,
Trying to make the right dose adjustments for corrections AND not overeating during those lows that we get late at night (you know, the ones where you say to yourself as you're walking to the kitchen at 1am that you're only going to have 1 cup of juice… you're only going to have 1 cup of juice… you're only going to have 1 cup of juice … and when you get to the kitchen, the Cap'n Crunch® grabs you by the the neck,throws you down to the floor and shoves 5 bowls into your mouth!) It takes a lot of time,effort and energy.

Sometimes, the most sane thing to do is to just collapse! I think of living with diabetes as running a marathon, not a fifty yard dash. When you run a marathon your strategy is different from running all out. You have to pace yourself, know where the rest stations are, know when to slow down and take a break so that you can stay in the race.

That's where scheduling my depression days come in, part of overall "coping with diabetes" plan. In the past, I used to get upset and tired of waking up in the morning and, out of nowhere, feeling bad or sad or scared or angry about having diabetes. You know, it really messes up your day! So instead of having depression decide when it wanted to "get" me, I decided to get it – on my schedule! I decided to start scheduling my diabetes depression days. What I do is this:

I call several of my closest friends and tell them that next Tuesday, from 9am-2pm I'm going to be depressed about having diabetes and that I want them to call me, every hour, and tell me how courageous and inspiring I am in managing my diabetes, and how that they don't know anyone else who is as courageous as I am. At first they used to say "But Joe, you're telling us what to say, that can't really work for you!" And I would say, "Just call, that's how much I really need to hear it!" Now, they're used to it and they just say "Fine."
The night before, I go out and buy 2 pints of Ben & Jerry's ice cream - Fudge Swirl and Chocolate Cookie Dough - along with renting 5 DVDs. The DVDs are usually tragically romantic. My favorite, which gets a lot of play, is Lawrence of Arabia – big picture, large music, high adventure and really sad – the hero dies in the end! Totally gets those tear ducts working
The morning of the depression day, I call into work and tell them that I'm not coming in to work because I'm having a hard time managing my diabetes. They say, "Okay, we'll see you tomorrow"- it took me years to finally be comfortable with the reality that I could be having a hard time with managing my diabetes and not beat myself up over it!
Then, I check my blood sugar, take enough of a bolus to cover for half a pint, pick the DVD, decide to start with the Cookie Dough ice cream, and start my "depression day" or pity party as the movie gets started.
About 10 minutes into the "party" the phone rings; it's my friends Sue and Bob. I answer it and they say, "Hi, it's Sue and Bob. We're just calling you to tell you that we think you are so courageous and inspiring; the way you manage your diabetes is heroic!" I say, "Why, that's so sweet of you to call! Thanks so much. Listen, I've just started the movie and need to watch it. Would you call me back in about an hour and tell me the same thing again?"

I'll get a few more calls like this from my friends. I'm happy as a clam, lying there in bed in my pajamas, watching the movie and enjoying my ice cream and - guess what? - it's only 11am, but I'm bored with the whole silly thing and just pack the "party" up and move on with my day, feeling much better - about everything!
The cloud has lifted and I'm ready to move on with the rest of my day, and the rest of my life. I almost never last until 2pm!

I think it works for me because it's so silly and it turns the whole serious thing of living with diabetes upside down and on its head, that it feels like cracking a Zen koan. Taking it all the way to the absurd extreme just feels great and takes the sting out of it. It may not make any sense at all, but it totally does to me and, more importantly, IT WORKS!

You need to find out what works for you and do it! Just one serious suggestion: Whatever you do, make sure it's very silly! Silly works - especially with something as serious as diabetes.

Scary Days!

Thursday, I got to see my first real severe hypoglycemia (low blood sugar), but it wasn't Andrew! It was a student of mine. I saw her shaking & asked if she was okay, but she shook her head no & collapsed. She could barely talk, eat, or drink! I knew she needed sugar, but it was so hard to get some into her! I asked a student to get the juice from the fridge that I had kept for Andrew, but there wasn't one. The student went to find real soda and the teacher next door called the nurse. I had glucose tabs in my purse, but there was no way she could chew. I grabbed a lollipop I'd been given for Valentine's thinking I could hold it & remove it if she seized, but she could barely open her mouth & it just wasn't working. I tried a laffy taffy since it was slimmer until the soda arrived. I got more soda on her shirt than in her mouth the first time, but it started to work. Then she was able to drink better with help. The nurse still couldn't understand her name by the time she got there, but she was doing so much better! It was scary, but I'm glad I knew what to do. It was a privilege to hold her, wipe the escaping tears, & be able to assure her she was going to be okay now. It was one of the first few good things that has come from Andrew's diagnosis.

Afterwards though, I felt the adrenaline pumping through my body for the rest of the day. I don't know if I'm more afraid for her or Andrew. It was just upsetting. We've always followed the rule, "Make sure there is always someone around who knows what to do in case he 'needs help' treating a low." The visual of how much help he could need was frightening. Today, I got on CWD (Children with Diabetes) forums and found out that one of the children died from diabetes on Thursday! He was a otherwise healthy 14 year old boy with a twin sister & older brother. He just didn't wake up. They expect the autopsy to reveal low blood sugar. Please pray for this family!!! Please pray for my student too. And Andrew while you're at it! And another family that lost a 13 year old to diabetes last month!

Just for the record, I HATE DIABETES!!!

A1c & General Update

Today was Vanderbilt Day for Andrew! It was an easy day since Kaitlyn didn't have to have her OGTT. We left at a respectible 8:30 a.m. & were home by 2:30! Andrew's A1c was 7.9, which is up. The A1c feels like a report card in diabetes parenting. I got a C. I was perfectionist student even when the stakes didn't involve the lifetime health of my child. It stinks, but all we can do is try again. Truth be told, we aren't surprised. He ran high after having strep & then had another virus. I was slow in making changes. He has needed corrections at night, but I get nervous about raising nighttime basals. Anyway, we reduced the breakfast ratio (I'm not sure I agree, but we'll try), lowered the Insulin Sensitivity Factor (ISF) so that he will get more insulin to treat a high, and raised the basal in the afternoon on his weekend basal & the nighttime basal on both weekdays and weekends. Next time, they want to give him the pneumococcal vaccine and do blood work to check his thyroid.

Otherwise, Andrew is doing well. He has started baseball and is having fun. I have started reading forums on a website called Children With Diabetes (CWD). It has been very informative, and most of the kids play baseball with their pumps even though Animas told us not to. Our endo also recommended playing connected, so we are giving it a try. Andrew is excited not to have to try and pull tubing from his rear or leg right before a game! So far, he's doing much better connected. He's dropping fast at the end of practice, so we will start experimenting with temp basals soon.

Speaking of experimenting, we had our first successful pizza bolus yesterday!!! I'm sure that doesn't sound like much, but pizza sends him up for HOURS! We have this combo feature on the pump to help with high fat, high carb meals like pizza, but it is experimentation to find what works for you. We have tried so many different combos! After reading on CWD what worked for some of those kids, we decided to try to bolus for all the pizza immediately AND all the pizza again spread out for 8 hours. Yes, we bolused 200% of what he ate. And it worked!!!

Andrew also had his first sleepover with a friend other than our next door neighbor a couple of weeks ago. The mom was wonderful and wanted to take very good care of him. We managed his D mostly over the phone. He called before meals with his number & what he was going to eat so we could calculate carbs. Then he called back if he ate anything extra. He drank milk before bed without insulin to keep him safe through the night. He woke up in the 300s, so we overdid it. Still, he had a great time, and felt fairly normal.

The Future of The Cure

Last night, I attended a wonderful lecture by Thomas Brobson from JDRF on research being done to find a cure for Type 1 Diabetes. It was so encouraging! He believes there will be a cure for diabetes, but that it probably won't be one silver bullet. It will probably be a combination of protocols, and he shared some wonderful things happening in diabetes research.

Huge advancements in research are being made in how to stop the assault of the immune system on the beta cells. The anti-CD3 drug shows great promise in stopping the progression of the disease. The data from that trial will be unlocked within the year. Another approach to slowing the immune attack is to induce tolerance with a series of shots using a piece of the protein on a beta cell. This is similar to taking allergy shots & may have little to no side effects.

There has been lots of research in curing diabetes in mice, but not so much in people. In 2005, there were only 5 clinical trials involving humans and no industry partnerships. In 2010, there are 47+ clinical trials and 28 industry partnerships! That means that enough progress has been made that companies believe there is something worth investing in!

One drug is helping to increase the number of beta cells a person has. The study is being targeted at type 2's , but the benefit would clearly carry over to type 1's. If one drug could halt the assault on beta cells and another drug could help create new ones, an effective cure could result! Researchers have also discovered that even women who have had T1 for a long time with little insulin production suddenly grow new beta cells when they are pregnant. The beta cells help cover the increased insulin needs throughout the pregnancy and then are reabsorbed into the body after delivery. Understanding this process may also help in finding a cure.

Mr. Brobson is type 1 himself and has actually worn the artificial pancreas! It is so much better than I thought! It integrates the pump & a continuous glucose monitor. It uses data over the last few minutes to predict where your BG is going & increases or decreases basal rates based on that. Mr. Brobson is a tightly controlled diabetic with an A1c of I think 5.4! He stayed in the hospital for 2 days. The first day he managed his diabetes himself, and the second day the computer program managed his diabetes. The computer did better than he did!!! I saw all the graphs of what happened each day. He had fewer highs & lows, but most touching was how he said he FELT. It was his first stress-free day since diagnosis. For the first time, he could take a break from his diabetes. He didn't poke his finger, count his carbs, or anything. He was stuck in a hospital room all day, but to him it still felt like a cure.

The components of the system - pump sites & CGM sites are getting smaller. Right now, Andrew doesn't want to wear the CGM. The iPro that he wore was a CGM & he doesn't want to wear that much hardwear all the time (see the bionic boy post in October 2009 for pictures!). Mr. Brobson said they are developing a transmitter the size of a button! Andrew might wear that if it meant no more safety checks at school, baseball, etc. If he wore a CGM, I could take the receiver behind the dugout & get a reading without bothering him at all!

The last research front that he mentioned was in insulin delivery. We are still injecting insulin into fatty tissue & waiting for it to be absorbed. Food hits the bloodstream faster than insulin & causes a spike. A healthy pancreas releases insulin straight into the bloodstream. There is a layer of blood flow just beneath the skin. They are trying to develop a patch with no needle that would infuse insulin into the blood just below the skin. It would be great to be free from needles & also to not have the inevitable spike that comes with eating!

Many of these trials will take years to complete & then get FDA approval. I still expect Andrew to grow up with diabetes. I also expect that Andrew will tell his grandchildren, "When I was a child, I HAD this disease called diabetes..."

Kris Freeman

http://www.diabetesmine.com/2010/02/kris-freeman-update-breaking-d-ground-in-olympic-endurance-sport.html

Interesting read!

Parents' Worst Fears & CGM

When Ben was still an infant, I remember telling a friend, "If I have a paranoid moment, I can go in and check on Ben. If he's still breathing, I know he's okay. If I'm worried about Andrew, I can't tell if he's okay or in a coma. I can't wake him up everytime I want to feel better."

Now, checking him in the night is just something else we have to do. He also sometimes sleeps through the checks, so I don't feel as bad about it. Last week, I woke up at 4 a.m. after already checking him at 2 a.m. My first thought was still, "Lord, did You wake me up for a reason? Do I need to check Andrew?" I did, and he was low.

Since baseball is starting already, I decided to search for information on wearing the pump during baseball games. Instead, I got the obituary of a teenage baseball player who managed his diabetes with a pump who died in his sleep. It makes me want to get the continuous glucose monitor with alarms NOW! However, it is expensive & Andrew is completely opposed. It's one more thing to have to insert, wear all the time, etc. The sad part of that is that Andrew's biggest objection to CGM was, "If I get a CGM & don't go low anymore, I'll never have candy again!" I countered with, "If you had CGM, we could learn how to better handle candy in your diet." He didn't believe me.

Strep Again - Without DKA!

Andrew tested positive to the rapid strep test. I'm not glad he has strep, but I'm so glad that if he has it, it tested positive!!! He has his antibiotic and will be fine. I'm thrilled to skip the vomiting & DKA this time! Ben might have strep too. The doctor offered to test him, but, since he obviously needed antibiotic for his nose, there really wasn't any point.

Gene thinks Will has an ear infection, so he may get to start antibiotics ahead of developing strep. Too bad Will didn't complain in time to go with the other boys. We are especially concerned about Will getting it since he accidentally drank after Andrew today!