Light at the End of the Tunnel – Diabetes from a Physician’s perspective

I was asked to paint a picture of the life of a diabetic from a physician’s point of view, at least the part that I see when I take care of my diabetic patients. And like a painting, it is open to some interpretation. Some of these experiences may not pertain to you, but I’m sure there will be some similarities that you all could relate to in some fashion or another. So here goes.

I’m sure you all remember the day that your loved one – child, grandchild, sibling, or even yourself was first diagnosed with Diabetes. It might have been in the clinic being evaluated for what you thought was a simple stomach flu or in the hospital because the vomiting wouldn’t stop and dehydration was setting in. But it always ends up the same – the doctor comes in and drops a bombshell that turns your world upside down. Mr. or Mrs. So and So, I have some bad news, your child has diabetes….

And from there, the long and difficult journey begins. If you’re lucky and have some medical experience, you don your paramedic, nurse, or doctor hat and handle the news a little better. But more often than not, you are confused – what did I do wrong, could I have prevented it, why did it have to happen to my child/to me, how will I be able to afford all the supplies and insulins, he will never eat desserts again, how will we ever cope with this?

You are given a booklet describing all these confusing insulins, how diabetes happens, how to check blood sugars, how to count exactly how much carbohydrates are needed for each meal, and how to check for ketones – what ARE ketones? You are then expected to memorize or at least understand a lifetime of the disease in half a day. They tell you it’s not your fault and that it just happens because of some autoimmune mumbo jumbo. But you always feel guilty somehow, thinking that you could have done something to prevent this. Nurses come in to check the blood sugar with these tiny sharp knives we call lancets and you ask, we have to do this HOW MANY TIMES A DAY? And through all this, you’re still trying to cope with the diagnosis because you are in shock. Then the true test comes. Syringes with these long needles come out that draw up this life saving liquid we call insulin and we ask… no, we TELL you that you have to inject this into your loved one 2-4 times a day to keep them alive. How in the world can you do this in the hospital, not to mention doing this at home alone without any nurse or doctor supervision. But you HAVE to do it. You take a deep breath and, praying it won’t hurt too much and will be quick, push the needle in.

And then before you know it, it’s done. You’ve given your first shot expecting to see blood squirt out of the wound you just made or your loved one screaming in agony but it’s not like that. A sigh of relief comes and then the cavalry enters. The diabetic educators come in to teach and reinforce proper technique and answer some of the myriad of questions you have. The nutritionist comes in and teaches you the bare basics of how to count carbohydrates and you spend the rest of the hospital stay practicing checking FSBG and drawing up and giving shots. You stay several days to fine tune the insulin and diet regimen. And you say to yourself, I THINK I can do this. Then we let you go home.

Now comes the even harder part – all of you who have sons, daughters, or grandchildren who were 4 years old or younger now have the daunting task of getting the right amount of carbohydrates into that very picky eater of yours. You bargain, you yell, you worry that each meal could end up a disaster with not enough carbohydrates eaten so in the end you do whatever it takes, even giving them ice cream or juice to make up for the rest of the carbohydrates they did not eat.   And this is just the meals. Next comes the sleepless nights worrying if playing in the swimming pool will drop the blood sugar overnight and you can’t get any rest until you check your loved one at 2am to make sure the blood sugar isn’t too low. And you say to yourself, how can we live like this? But even though the task is daunting, there is HOPE because you are not alone. The doctors and diabetic educators are just a phone call away to help you navigate through those initial sleepless nights, JDRF gave bags of hope containing starter supplies and literature to help you understand and start to control this disease, not to mention a very dedicated ‘someone’ who made it her mission to meet in person the new diabetic family if she could. More recently, JDRF sponsors a mentoring program that can pair you up with someone who has a child similar in age to your own who knows what you are going through if you needed personal advice. And there are the parent groups like FOTOD where you can glean some tips, tricks, and sometimes a sympathetic ear to talk to. And slowly, it gets a little easier. You get used to the routine and make it a part of your life and theirs and things are stable for a while. But then the next hurdle comes – the awakening or teenage years.

The teenager now understands that they are truly different from their peers. They have done the same routine for years and years and are tired of it. In just one year, they have checked their blood sugar about 1000-2000 times and have given over 700 to 1500 injections which have caused scars, lumps, and bruises and they are just tired of it all. They don’t listen and forget to bolus, forget to count carbohydrates, and the Hemoglobin A1C rises. As a parent you tell at them to be more responsible and iterate what the doctor says – that this is important to prevent complications of diabetes and that you cannot be there all the time like you did when they were 5 years old so they should be more responsible. The disapproving eyes of the parents come out and the teenager just stares at the floor. And all this time, the child is either angry at the world and upset that this had to happen to him, or she is so critical of herself that they think that an 8% Hemoglobin A1C means they have failed and what’s the use of doing all this hard work if she can’t even get her blood tests in perfect range. Some are confused because when they learned about carbohydrate counting and drawing up and giving shots, they were only 3 years old and pretty much mom and dad did everything for them. But they are uncomfortable, ashamed, and sometimes too proud to admit that they really haven’t mastered any of this even though Diabetes has been a part of their lives for more than a decade. And this is on top of the peer pressures of being a teenager. For them, there is no relief in sight, no one who understands what they are going through, and this constant pressure to keep that Hemoglobin A1C stable when all they really want is to be normal – but again, there is HOPE. Diabetes camp for many showed them that they were not alone in this and that they could make lifelong friends with other diabetics their age. Or maybe it was help from a family member, friend, or counsellor who could sympathize and lend a shoulder to lean on. Or maybe, at the doctor’s insistence, that a ‘refresher’ course in carbohydrate counting and diabetes care, not to mention the carbohydrate counting apps for those Iphones and Android cell phones, made them more confident with what they were doing. And for many, JDRF’s commitment to our Type 1 diabetics, whether it be the young adults with Type 1 Young Leadership Committee, the yearly outreach conference, or the endless fight to fund potential cures or technological advances, reminds them that they are not alone in this or forgotten.

And then comes the last hurdle – letting them go and praying they do well either in college or striking out on their own to be independent. You don’t want to, you want to be there always to be behind them and check their blood sugar at 2am and make sure they are safe because they will always be your baby, but eventually you have to let them go and hope for the best. But again, there is HOPE. There is a push now to start retraining these children at 16 ½ years of age to be more independent with their diabetes, seeing the doctor on their own while the parent waits in the waiting room, having peer get-togethers to discuss problems that only other teenagers understand, thinking ahead to get an adult endocrinologist to transition to, not to mention thinking about insurance policies to continue getting the supplies that they need. And for some, a Continuous glucose monitor system or CGMS becomes the parent’s electronic guardian angel system that warns the child if the sugar becomes too low or high because mom and dad are miles away from the dorms and cannot watch them 24/7.

Although what I have portrayed seems bleak, impossible, unfair, and with no end in sight, you always persevere, stare this disease in the face, and survive. You do not go quietly into that dark night. No, you REFUSE to go quietly into that dark night. And this is what I see day in and out in each family – hope for the future because you don’t give up and keep on fighting. You come to see us faithfully every 3 months, bringing in handwritten glucose log books, computerized reports from Diasend or Excel spreadsheets, CGMS reports, and always ask us what you can do better. You talk to our diabetic educators in between visits to make sure what you are doing is correct and advocate for your child in the schools to make sure their lunch isn’t at 2pm if possible. And this is why I, as a doctor, want to thank each and every one of you for taking care of our patients, for the hard work that does NOT go un-noticed by us. We are just guideposts, seeing them every 3 months and doing adjustments to their insulins and carbohydrate amounts. But YOU are the soldiers at the forefront. You are the ones who stay up at night keeping them safe, you are the ones who pack their lunches and count their carbohydrates, you are the ones who constantly remind them to check their blood sugars and take their insulin even when they don’t want to. And YOU are the ones who never give up and continuously fight hard for HOPE, to find some form of treatment or cure that would make their lives easier. And for that I thank you.

Nunilo Rubio Jr., MD

Physician and friend