A Drop of Sadness

You will be ten soon.  A decade.  You don't remember life without diabetes.  But, I do.  Our first seven years and three months were without fingersticks, site and dexcom changes, highs and lows.  I worried about normal childhood things, but not that you would die in your sleep.  Your little fingers looked like they do in this picture---free from the callouses of multiple sticks.  But, your smile is the same.  You've always had a smile that could light up the world.

I know you are fine.  I know we are lucky we had seven years diabetes free---so many I have met did not even get that.  The painful moments are few and far between now.  You are growing up into such a beautiful young lady.  I am so proud to be your mom.

I can't help but wish you remembered "before."  We had such fun times.  There were times I let you eat as much candy as you wanted, times you drank tons of the chocolate milk you love, times I didn't ask you to check your blood sugar, or ask "are you high...are you low?"  Times we just took off for fun "mommy days" without the big diabetes backpack following along.  There were times every third day didn't involve the site change you still hate so much.  Times you didn't have to wear all these gadgets around your waist.  But, I also know maybe it is easier you don't remember.

You will be ten soon.  And, despite the drop of sadness I feel, I remind myself that a very short time ago you would not have turned ten.  And even though insulin is not a cure, it has kept you alive with your smile that lights up the world.  Happy Birthday baby girl.  I love you more every single day.

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.

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.

Keeping Watch

Murphy's Law: Jessica's blood sugars will choose the seven nights I am on duty alone to go completely haywire. I freakin hate Murphy's Law. I am exhausted. Utterly and completely exhausted. In diabetes defense, it is not entirely the blood sugars' fault I am so tired. I sometimes wonder how much medical school and residency have molded me in how I care for Jess. Do I worry about different things than other parents because I have seen so much? Am I harder on myself as I have been exposed to years of hearing about the "non-compliant diabetic?" I know it is because of my medical training that I try so hard to empower Jess---to make this her disease as much as it can be a 9 year old's disease...to teach her and let her make as many decisions about her own care as she can. It is also my medical training that leads to me sleeping horribly when I am on my own with her. A common feeling among my friends in residency was the huge PHEW you felt the morning after call when an unstable patient had not died on your shift. This feeling really can not be described unless you have experienced it. I remember so vividly sitting apprehensively multiple times during residency and getting "sign out" on unstable patients that might not make it through the night. I would count down the often 24 or more hours I was on call as I kept such a close watch on these patients. I absolutely did not want the patient to die on my shift. Obviously, I did not want the patient to die at all...but every resident I knew would breath a sigh of relief when they could sign over these unstable patients and go home to rest knowing they had done their very best and the patient was still alive. In some weird way when I am alone at night with Jess these memories and feelings return. When the hubby and I are both here at night the responsibility is shared. If I don't hear her Dexcom alerting us that she is low then he might. There is back up. But, when I am alone I am transported on some level back to residency. Jess is my only patient and I am on call every night. And, God dammit, nothing better happen to her on my shift. The "dead in bed syndrome" haunts me when I am alone at night. I wonder for the millionth time why she does not wake when she is low. I simply can not fathom going in her bedroom in the morning and finding her dead. I can't imagine ever recovering, nor can I imagine living the rest of my life knowing that I was the one here alone when it happened, and that I failed to keep her safe. This would be the ultimate failure as a parent and as a physician. It is like her pancreas knows my fears and taunts me. One night this week she was high all night. She had ketones. Jess pulled out her site to check as we were both sure it was kinked. It was completely fine which led to her crying and saying "Daddy inserted that site...I want daddy to insert my site." Of course, she knew he was at the hospital and couldn't. I reassured her that I do kick butt site changes and thankfully we did not hit a nerve. She continued to run high and for the life of me I could not figure out why. The next night...lows. So much scarier for me then the highs. I no sooner would treat a low and give a snack then the Dex would be going off again to alert me she was falling fast. This after a night of highs with nothing different. And two more nights with lows despite changing basal rates. Tonight I went to bed at 9 pm...simply could not stay awake any longer. I woke from a sound sleep to my hubby shaking me at 10:30..."I'm so sorry but you have to get up. Jess has been low three times and I've fed her so much she is refusing to eat. I have to leave for the hospital and you are going to have to recheck her." I groggily get up and put her in my bed for the 5th time this week. It is easier to check her without having to get up. I also have an unfounded theory that if she were to get low I would sense it when she is next to me. Or, I would wake if she had a seizure. At least I tell myself this is the case. And, so tonight will be another night of restless sleep and blood sugar checks. This "call" every night is killing me...in residency the most frequent I was ever on call was q2 (every other night) and there was time to rest in between. My days have been packed with my own patients and my daughters who need me to care for them. I am counting down the hours tonight until the hubby is finally off these seven days and my "shift" is done.

The Death of a Pancreas

Our journey with Jessica's diabetes has been unusual compared to some. Her diagnosis, while emotionally devastating, was physically easier than others. We were INCREDIBLY blessed that she was not sick at diagnosis---just simply thirsty. She will forever tell everyone that she "got diabetes in a McDonald's parking lot on the way to Shenandoah." I have often had some form of survivor's guilt as I have listened to others tell their diagnosis day stories. I realize how lucky we are in this regard, and knowing what we went through those first few months simply cannot imagine what others have gone through. Jess was on incredibly small doses of insulin for months. She used to take 1/2 unit of Lantus a day, and 1/2 unit of Novolog with meals. They thought perhaps she had MODY (a cluster of genetic forms some of which only require oral meds). She never had positive islet cell antibodies (a hallmark in Type 1). She never had ketones---not even at diagnosis when we found that the "critical high" on her meter was actually a blood sugar of 684. This gave me hope. So many of the potential areas of research are focused on stopping the body's attack on the pancreas and allowing the beta cells to regenerate. We were different I assured myself early on. Jess would continue to make insulin as demonstrated by her extremely low insulin requirements and lack of ketones. That cure might come. Maybe I needed this early on. I definitely wasn't fully ready to accept that this was it. This was how it was going to be. My "perfect" little girl surely could not be un-repairably flawed. I needed hope to survive that first year. Even though I continued to live in denial and tell myself that Jess's pancreas was only sick not dead, we did as we were told. We checked ketones with two unexplained highs on the pump. They were always negative. Of course they were I told myself. Her pancreas is still chugging along, just on a slower track than normal. But, of course, her rates climbed as the honeymoon ended. And, I healed. We all did. Diabetes moved to the back burner, instead of suffocating us with its glaring fire. Until one night the pump was forgotten by the bathroom sink. It was then we were given a true glimpse as to the well being of Jessica's pancreas. She awoke nauseated and having to pee...and, the ketone meter declared her pancreas's death. Large ketones. A working, living pancreas does not allow large ketones to be made. I paused as hope shattered. But, the pain I expected wasn't there. A bit of an ouch perhaps, but not the deep heart wrenching pain I had anticipated. Time had shown me that I still have my "perfect" little girl. Only she's not as little. She's bigger, stronger, more resilient, and simply my hero. And, although I would give anything to revive her pancreas she's absolutely "perfect" without it.

Humility

One of the things that has been a positive about Jessica's diagnosis is the fact that I would like to think it has made me a better family doc. I have never lacked empathy, but at times I have lacked patience. I would be lying if I said there weren't times when I have been frustrated by my patient's "non-compliance." I hate that word..."non-compliance." What does that mean anyhow? Life is complicated and busy. People are humans incapable of perfection. And, taking care of one's health is HARD! The nice thing about Jessica's diabetes (and I can finally see so many nice, good things) is that it keeps me humble. Case in point: Last night the hubby checked Jess before we went to bed. 122. Exercised all day. Dexcom currently broken and awaiting a new. Kid doesn't wake when she's low (the most terrifying thing as a parent.) So, Sean gives her a snack. I fall asleep and don't wake until 3 am. What I didn't know is that Sean had checked her at 11 pm and she was 300 and he had bolused her. I check her. 340. Wow, that must have been some snack. I bolus her and go back to bed (I was only ever half a wake anyhow!) The ping has a remote which I love. But, we discovered its flaw last night! Jess wakes at 6:30 am as she has to "pee really bad." I check her again and she is still 340. That's weird I think...better check ketones and her site. LARGE ketones. Holy shit! The kid never has ketones...she didn't even had ketones at diagnosis. Once with a kinked site she had small ketones...but LARGE? I unzip her one piece pajamas to check her site, and pull it in preparation of inserting another. Jess realizes before I do..."my pump isn't on. Oh no---I forgot to put my pump back on after my shower." Apparently the pump was in range of the remote so we were bolusing the bathroom sink all night. The blame starts. In my head...I am blaming myself. I suck. I am a terrible mom. In my head I blame Sean...if she was 300 why didn't he wake me to tell me so I would have known the history to the 340? But, before I can even voice any of this, there is my nine year old daughter out loud blaming herself. "How could I do this?" she says. "I'm so stupid...I can't believe I did this." Whoa...stop.... I tell Jessica (and myself in my head, and my hubby who I am sure has been having the same self blame thoughts)....if we are to blame anyone...blame diabetes. If we are to be mad at anyone, be mad at diabetes. "Normal" people don't have to remember to "plug" back in after showers. It is diabetes's fault she must now remember. We are human. We are not computers. We make mistakes. She has had the pump over a year and this has not happened before. It was a multi-system breakdown, but we are each but a human. I guess we were "non-compliant" last night. But, life is messy. Life is busy. And, we are not perfect. My patients' have messy, busy lives too. I'll once again remember that when they are "non-compliant." And, Jess is fine. The ketones cleared within a couple of hours and she returned to her messy, busy, non-perfect life.

Better Late Than Never

We attended our first Children With Diabetes conference this weekend. To say that it was an absolutely amazing would be the understatement of the year. It was like going home. It felt as though we were welcomed into this huge amazing family with open arms.

Jessica has struggled deeply lately. Although in retrospect it makes perfect sense, I did not realize that it is partially because she has entered a new developmental stage. When an adult is diagnosed with a chronic disease they are, for the most part, done developing. Children continue to work through the developmental stages. So, what diabetes meant to Jessica at age 7 is very different than what it now means to a 9 1/2 year old. She has been processing and mourning what the diagnosis means to her at this age, and it has been a bumpy road. Add her major growth spurts and pre-pubertal hormones into the mix and the high blood sugars have made her even more miserable. My heart has ached for her, and I have been more than a little frustrated at taking the burden of many of her outbursts. She has told Sean and I often that we don't know what it feels like to be her. She is absolutely right. And, so we registered for this conference hoping it would help. Jessica was not excited to go Friday..."why do we have to go to this conference? I know I'm not alone in having diabetes...why do I have to go see other kids with it too?" But, we drove to Conshohocken (I kid you not...that is really the name of the town!) and made it to the hotel late Friday night.

Within an hour of the conference starting I knew we had done the right thing by coming. There is simply nothing else like spending time with other families who in this one area are living as we are. We saw old friends and met so many new. We all share the same language, we all know the emotions, the roller coasters, the highs, the lows, the fear, the pain, the hope...it was like being surrounded by so many kindred spirits.

The day was packed with lectures for the grownups, while the kids were in their own sessions. My mind spun from the graphs, the equations, the massive amounts of information being thrown in my direction. My heart ached from hearing others diagnosis stories, and bled from talking with the newly diagnosed. I am not yet so far out from Jessica's diagnosis that it does not cause physical pain to think about it, and to see others in such pain. But yet, I was able to tell them..."It gets so much better." And, it has. It so completely has.

I met so many absolutely amazing kids. Kids that were diagnosed at 8 months, 12 months, 2 years. Kids that were diagnosed the same age as Jess. Kids that were diagnosed older. All of these amazing heros who prick their little fingers multiple times a day, endure injections and site changes on their small bodies, brave highs and lows even when some of them are too young to even understand why they feel this way. They are not without fear or anger. But they are resilient and brave, and above all else they are kids.

I met adults living with Type 1 who were inspiring. They give me hope. They comfort Sean who has lived his life with Type 1 in relative isolation. Getting diagnosed at almost 18 has its own pitfalls...he didn't have the chance as a child to be connected into the Type 1 community. There were so many awe inspiring adults with Type 1....it was humbling to be around them and to learn from them. I found myself swallowing tears multiple times as I watched with huge gratitude as they enveloped the Type 1 kids in hope and support. I watched as Sean experienced such comfort talking with them. He thanked me for registering that first night with tears in his eyes...he told me that he knew we did it for Jess, but that he needed it too.

I watched Jessica smile and run with her new buddies. I held back tears of comfort watching her and her friends check their blood sugars together. I laughed as she showed me a friends pump covered in duct tape (the new tween rage-duct tape?!) and tell me she wants to do that too---"Mom, isn't a duct tape pump cool?" I listened in complete shock as she told me "Mom, I might not take the cure if it comes...I actually am ok with diabetes," as she then fled off again with her Type 1 buddies. I watched proudly as she showed other kids her Dexcom...the very gadget that she only months ago refused to wear.

A group of us went to dinner last night...what an amazing experience to be able to say to other parents..."How many carbs do you think are in that?" How comforting to groan with another mom that the night might be rough with the likely highs from eating out. For the first time ever we forgot to bring insulin...how amazing to have another adult Type 1 bring us a bottle, and also a new pump site for Sean to try that she thinks he'll like better.

This morning new friends came down without the mom. "She's still sleeping?" I ask. "Rough blood sugar night" says the dad. Their adorable T1 daughter sits laughing and happy. How comforting to look at them and know exactly what it is like. The exhaustion, the worry, but the pure joy in seeing your happy child un-phased by the rough blood sugar night as they slept soundly while the parents kept watch.

The morning wrap up lecture was incredible. But, it was completely emotionally draining. There were many tears shed as one dad shared his experiences in raising two T1 kids. The fine balance between supporting your child, but yet allowing them to stand on their own. The inspiring slides of all the famous and not so famous type 1 kids that have grown up to do amazing, amazing things. The powerful words he spoke to all the T1 kids as he told them they can do "ANYTHING!"

There were tears shed by Jess when we told her it was time to go. She handed me a stack of papers with all her new friends phone numbers. I watched as they giggled and talked of meeting in Orlando this summer for the Children With Diabetes Friends For Life conference.

So many other huge things happened...we met Kerri Sparling of Six Until Me. My kids adored her, treated her like a celebrity, and asked for her autograph. For me, it was surreal...I have read her blog so much these last two years. Her musings have comforted me, brought me hope, and been refreshing in their honesty. To meet her in person, was truly incredible.

Watching Jessica be in the majority instead of the only kid with diabetes was phenomenal. Here, at this conference, Courtney and I were the minority with our still working pancreases. Yet we were welcomed as part of the Type 1 diabetes family. I watched thankfully as a T1 adult told Courtney that it was ok her pancreas still works, and explained to her that she was something called a T3 and that Type 3's are incredibly important people. I watched as Courtney became fast friends not only with all the type 1 kids but the siblings without diabetes as well.

As we have found with the other family support weekends we have attended...return to the real world is hard. At the conference the food is labeled, and the world is sheltering. We left so incredibly happy that we attended, but also emotionally drained. There is so much intellectual information to absorb, and so many emotions exposed that I find I come home exhausted. I find myself wishing that every one of my patients could find a support group such as Children With Diabetes. We all returned more motivated, and more healed. And, we are already counting down the days to our next Children With Diabetes conference.