I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Monday, June 25, 2012

The Monkey on Our Back

blood sugar checking in the wild!
Vacation with diabetes...an oxymoron? If not, then certainly at least an adventure.

Day 1: Kuddos to mom...I remembered not only to set a temp basal for the long plane trip, but also to re-set the clock on her pump for the time change. Well done, yes...well done. Short victory...we get in very late and Jess wakes the next morning in the 500s despite going to bed in the low 200s. Delayed effect of inactivity??? Stress of traveling??? Pump site all ok and she comes down. I am left wondering how to prevent this in the future as I already did the trick I knew by increasing her basal rate for the plane ride. Hmmm.
Diabetes 1. Mom 0. 

Day 2: Sporadic blood sugars all over the place. Imperfect carb counting. Car ride. Stress. Who knows. But, no higher than the 300s so we'll count this as a tie.
Diabetes 2. Mom 1.

 Day 3: Awesome day of hiking. Remembered to bring supplies for emergency site changes, lows, glucagon, snacks, water. And, that is in addition to first aid kit, snake bite kit, biodegradable toilet paper, survival kit, layers, and lunch. We check frequently on the long hike, and have an incredible day of hiking to mountain lakes.
Diabetes 2. Mom 2.

 Day 4: Wake to a night of high blood sugars and ketones, with a much despised 2 am site change. Leading theory...it was HOT on the hike. Hotter than the beach. Both the hubby and I decide that the insulin in her pump tubing probably went bad. We change the site and the insulin. By the next morning trace ketones and blood sugars in goal. We set off for a day of white water rafting. We haven't taken Jess White Water Rafting before and Sean hasn't been since he has been on the pump. This takes some preparing as the dry bag they give us is very small and won't be reachable during most of the trip. I put skittles in triple ziplock bags and stick them in Jess's pants for emergency lows while on the water. We have an INCREDIBLE day and are thrilled the girls fall in love with white water rafting as we previously have. Diabetes won at night, but we'll celebrate a victory for the day!
Diabetes 3. Mom 3.

 Days 5-10 more of the same. We travel to our cabin in Wyoming which is on dirt roads and without reliable cell phone coverage or electricity. We go on long hikes without cell phone coverage. All of this means thinking ahead to be prepared to handle any diabetes emergency ourselves, as help may take awhile. I talk out loud to Jessica as I pack for these outings. I explain why I am bringing the different things I am bringing, and how they would help us if her pump fails, or if she has repeated lows.

In the end, although we were forced to travel with an unwanted monkey on our backs, I would declare the trip a victory. I want Jessica to see that she can do anything. Diabetes shouldn't stop her from climbing Mt. Everest if she so desires. The question should not be IF she can do it, but HOW she will do it. I'd like to think we are showing her this. We have managed to keep doing all the outdoor activities we love despite dying pancreases. My hope someday is that she will be cured of the monkey on her back. But until then, I want her to see it as all it is...an inconvenience not a limitation.

Saturday, June 9, 2012

The Blame Game

Do we as human beings need to blame someone or something? When Jessica was first diagnosed I blamed myself. I knew genetics had contributed, but something in her environment had tipped the scale. Was it that I only breastfed for 9 months? Did I allow her to drink too much cow's milk? Was it that I put her in daycare so I could finish my residency and begin working as a family doc? What environmental insult had I not protected her from? Thankfully, those days have past. I now only rarely give thought to what triggered the death of her pancreas. It is what it is. And, truthfully I now see so many ways that diabetes has formed her that I can't imagine what she would even look like had it not occurred. I'm thankful for time. It does heal. But, I still blame myself for many things. Work has been crazy. And, lets face it...diabetes and all of the carb counting has destroyed my love of cooking. I now view all the meal planning and measuring as a dreaded task that I am only too happy to avoid. Others talk of retiring if they won the lottery. Not I...I would hire a chef! We've eaten out more than I would like to admit this month. Although we have gotten pretty good at guessing carbs, it is not the same as when we eat at home. I can pacify my guilt in the moment and tell myself restaurant fajitas are somewhat nutritious. And, geez...at least we know the carb count of a Happy Meal. But, it is not the best thing for Jess. And, I know that. When her numbers are high or I failed to predict a low...those all lead to the blame game as well. And, I am not alone in this unrealistic game. I diagnosed a patient with new onset Type 2 diabetes last week. This is not unusual. Sadly, I do it all the time. I am always learning from how different patients process the diagnosis different ways. Some blame me..."Until I came and saw you for a physical I was fine...you gave me diabetes." Others meet it with denial..."No one in my family has diabetes...are you sure your test is right?" This patient blamed himself. I haven't seen him often. But, I've been slowly getting to know him. He's wicked smart and very involved in his healthcare. I last saw him over a year ago. He's not from this country. But sadly, as so many immigrants, he has quickly become assimilated into our wonderful American society...with its fast food at every corner, overall lack of exercise, and busy, hectic pace. He's always had normal bloodwork...we've even checked a HgbA1c...not standard of care in someone who's sugars have always been normal, but he requested it given that his mom has diabetes. He called me a few weeks back. "My sugars have been running high." Apparently he has a meter at home and has often checked his sugars in between doctors visits. "I need to be checked for diabetes." I ordered the appropriate blood work which did indeed meet the diagnosis. And, I brought him in to talk. I walk in the door and he greets me and then says "It's my fault." "I haven't been eating right or exercising...I've gained some weight...this is all my fault." The Blame Game has started. Whoa. Sit down. I tell him many things that I hope are comforting...this is not his fault. I have patients that are 300 pounds and eat Ho Ho's for breakfast and they don't have diabetes. And, even if they did it wouldn't be their fault. In my head I think to myself if we are going to blame anyone, blame America's society and its lack of emphasis on healthy eating and exercise. But the truth is it is no one's fault. Some people get lucky in the gene game and others don't. Sure environment plays a role, but it is not the only player here. I tell him that we all need to focus on healthy eating and exercise, and that just as I try to do that, I hope he will too. But, we are not perfect and we all can only do our best. We talk about different ways he can make changes and how we will work together to manage this. I ask him about his mom. "She's got it bad" he tells me. "She's on insulin." I check my baggage outside the encounter as I think to myself that I wish that wasn't the definition of "having it bad." I talk with him about how proactive he has been in catching it early, and that I know we can work together to keep him healthy. I'd like to believe him when he tells me how much better I have made him feel. He says he's glad I'm his doctor and he feels so much more hopeful. I'd like to think he won't go home and continue the blame game, but that he will focus instead on being positive and making positive changes. If I've made that difference, I've done well. I know that in the end it won't be the metformin I prescribed him that will ensure he does well. It will be his acceptance and his sense of control over this new diagnosis---his ability to shift from self blame to self help.