Diabetes Awareness Month

I have never been more acutely aware of diabetes than this particular month. And all I want to do right now is ignore diabetes completely.

I know that designating November as Diabetes Awareness Month was not meant for making the patients themselves aware, but for the public. For the masses that don't know anything about Type 1 or Type 2 or any other type and for those that think diabetes is not as big a deal as breast cancer and heart disease. I appreciate that. I just can't bring myself to join the movement at this moment in time.

I got bad news at the ophthalmologist at the start of this month regarding my recently diagnosed retinopathy. It is news that will be more eloquently fleshed out in a future post, when I have the strength to chip this mountain of emotion down into words and sentences.

For now, I just want to bury it. All of it. The tears, the guilt, the frustration, the anger, the shame, the fear, the regret. The massive regret. I can't face it all head-on right now. I want to walk away from diabetes.

But diabetes is holding me hostage. As much as I want to ignore it for even a few hours, knowing that ignoring it is what gave me this complication in the first place forces me to pay closer attention. Test, bolus, repeat. I am shackled by the guilt of it and fear of doing even more damage. The ball and chain has always been attached, it's just never felt so heavy before.

Work has been busier than ever, but I have been slower to get out of bed. I drag myself there and put on a happy face. I encourage patients to keep doing their best. I diagnose kids with new-onset Type 1 and tell them that they can live a perfectly healthy, normal life free of complications. This is the truth. It isn't my truth, but I keep that to myself. And I constantly feel like a hypocrite behind my cheerful facade.

My very situation is why Diabetes Awareness Month needs to exist. We need to get the word out to fund the research that improves and eventually eradicates this illness so no one else has to feel what I feel right now. I am grateful that the diabetes community has been so involved in getting the word out and wish I was a more vocal participant, but my rally cries have been overcome by a different kind of cry.

Pump Surgery

I have been on-call this whole month and it has been chock-full of interesting patients, though the majority involved issues with every hormone besides insulin. Keeping my head above the proverbial water has been a struggle.

So, of course, life decided to throw me a few more challenges in the midst of the work-related ones. Nothing serious - just annoyances like flat tires and stolen credit cards. And tonight I had my own medical issue that stole my attention away from the many tasks on my to-do list.

It started with a simple need for a pump site change. Then I got that low battery warning. No big deal, except that the battery cap on my pump appeared to be cemented on. I pushed and pushed and pushed the quarter against that plastic slot like it was the only job I had and it did not give me a hint of a budge. I pushed so hard that the plastic started to deform, causing the quarter to slip and slide out of place with each push. I started to doubt my approach.

Lefty loosey, righty tighty, yes? YES! I was definitely lefty loosey-ing, but without the loosening. It figures my husband was working late on the one night I REALLY needed him, haha.

I broke down and called the pump technical support, and the nice lady on the other end of the line suggested I find a pair of needle-nose pliers to help pry that battery cap off. She was willing to wait for me to find some, but I knew that was a lost cause. I went for a different kind of tool.

Rummaging through my husband's desk, I found a pair of surgical forceps -- medical pliers! They are normally used for grabbing on to surgical suture or vessels or skin, but I used them to operate on that battery cap and operate they did! It was off in less than 5 seconds.

We may not have the most traditional toolbox in our house, but it gets the job done!

Washed Away

A childhood in Florida is amphibious. The summer heat is suffocating, and the only way you feel you can breathe is to keep yourself submerged in the cool water of pools, lakes, and oceans.

All of my fondest childhood memories involve the water. I would jump and doggy paddle and dive and dunk to my heart’s content. Hours later my parents would shout for me to come inside the house, but I would quickly duck under the water and pretend I never heard it.

Only diabetes had a real way of pulling me out. But not for long. Keeping juice near the edge of the pool or next to the beach chair would have me back in action minutes after a swimming-induced low. As a child, I felt invincible in the water.

But it wasn’t until just prior to my wedding that my now-husband convinced me to try SCUBA diving. He is a diving enthusiast, but I had never given it much thought before our relationship because no one close to me was a SCUBA diver. I finished my certification a few weeks before our wedding, and after the ceremony we jetted off to beautiful blue waters to try out my new skills. It was love at first dive.

I am extra vigilant of my diabetes before I dive. I check my blood sugar just prior to jumping in to be sure I am running between 200-220 mg/dl before the 45 minute swim. Sometimes there are strong currents that force me to work harder than expected and it can zap my blood sugar. Rising to the surface for a glucose source during the dive is not an option for risk of getting the bends, so I pack my dive vest with one or two 30g carbohydrate gel packs that I can squeeze into my mouth in case I go low under water.

I am also sure to be extra vigilant once I’m out of the water, again checking my blood sugar and treating any residual high or low blood sugars.

But being under water allows me to feel free in a way that I never am when I am above it. My oxygen tank and BCD replace my pump and CGM. Any electronic beeping comes from dive computers and underwater cameras, not high and low alarms. The only thing stinging my skin may be an occasional brush with fire coral, not pricks of a lancet.

The shouts and demands of life above are replaced by the calm sound of the bubbles flowing from my mask. I float effortlessly over underwater landscapes and creatures, the weight of the life with diabetes washed from my shoulders.

Until the Cure

Diabetes is Goliath, and researchers often feel like David. How are we ever going to take down such a huge opponent? Where is the cure?

I want those researchers to focus on the cure. But I also support work that looks into how we can live well alongside the beast that is diabetes.

But I have been seeing a lot of angry comments swirling around the internet regarding support of non-cure based research, especially pertaining to the artificial pancreas.
"We don't want another fancy pump! We want a cure!"
"The artificial pancreas is just another money-making device for big pharma! We want a cure!"

I understand. I have had diabetes for 20 years and would give anything to not have it. I would be delighted to be "out of a job" in caring for kids with Type I. There are few other wishes I use on birthday candles and fallen eyelashes.

But I still have a hard time fully sympathizing with those sentiments.

I gave a lecture this past week to first year medical students. They wanted to learn about the dual-hormone artificial pancreas, but starting there would be like picking up a book and reading the second to last chapter first. I had to start from the beginning to help them really appreciate how significant the artificial pancreas will be.

We went over how doctors did not even know that a lack of insulin was what caused diabetes for the 3,500 years it was recognized as an illness. How people died within a year of diagnosis from starvation until Drs. Banting and Best discovered how to effectively use insulin. How the insulin had to be drawn into glass syringes that had to be sterilized with heat and how the very long, very thick needles had to be hand-sharpened each day. And about how the insulin came from animals, which created a series of side-effects in many patients until human insulin was able to be synthesized. And once we had human insulin, things improved again with fast-acting Humalog/Novolog and long-acting Lantus. Insulin pumps were invented and refined year after year.
We also discussed how the measure of insulin's effectiveness could only be examined through urine, then through cumbersome blood tests, and ultimately with the advent of continuous glucose monitoring.

We have made such amazing strides in the last 90 years, but mostly rapidly within the last 30 years. Lantus came out when I was in high school and completely changed my quality of life -- no more rigid time schedules, no more inflexible meal plans. I felt like my day wasn't dictated by diabetes in nearly the same way it had been for so many years. And when pump technology improved, it changed my life for the better tenfold. And my CGM is the only reason I have been able to maintain the tight control that I'm in now.

It is hard to appreciate how far we've come when all you have known is pumps and CGGs. All of these advancements were only possible through research - in petri dishes, in animals, in humans. Research gave us these gifts.

The development of refined insulin saved millions of lives. But what if we had stopped there and only focused on the cure? We wouldn't have any of the amazing products that help us live well with diabetes today.

The artificial pancreas is going to be the next big life-changer. The preliminary data is astounding, with Dr. Damiano's study giving trial patients projected A1Cs of 6.3% with less work than they put into their diabetes now. Why would we not support this? Researchers are devoting their lives to this work and many have children and other family members with Type 1 Diabetes. They hunger for the cure, too. But they hope to make life with diabetes better in the meantime.

People often mistakenly believe that supporting non-cure based research detracts from finding the cure. There are armies of researchers trying to realize hundreds of different possibilities. Projects are taking place simultaneously all over the world to treat, prevent, AND cure diabetes.

Shouldn't we continue to tackle this beast from all angles? My answer to that question will always be yes.

And in this way, we'll eventually take it down.

Grinch

I don’t like denying patients anything. I always try to find a way to make things work. An appointment time on a day I don’t usually work? I can swing that. A diabetes supply that isn’t covered by their insurance? I will do my best to figure something out.

But the other day I was asked to sign off on a wish – of the Make-a-Wish variety. Except the Make-a-Wish foundation had already deemed the patient medically unqualified for their services, so they forwarded the requested wish to a similar foundation. That foundation called me.

I asked them what their criteria are for granting wishes so I could better assess this patient’s qualifications. They told me they fund wishes for children aged 2 ½ to 18 years with “life-threatening illnesses” that are either “progressive, degenetrative, or debilitating.”

I mulled it over in my mind.

Is diabetes a life-threatening illness? Yes, it can be.
Is it progressive? Maybe. Taming it does not always become MORE difficult over time, but some people do develop hypoglycemia unawareness later in life.
Degenerative? No, that term is usually reserved for horrible neurologic diseases that render patients unable to communicate, feed themselves, ambulate, etc.
Debilitating? Yes. But only with poor control for years and years. And even then, it isn’t debilitating for everyone.

Our office knows this patient well. His family is lovely and his father has a prominent position in the community. His diabetes has been impressively controlled since he was diagnosed seven years prior. He actively participates in multiple sports and after-school activities. He is planning on attending a competitive university. Diabetes has never held him back and was showing no signs that it ever would.

I decided that I had no choice but to sign that the patient was not medically eligible for the wish as he did not meet the criteria put forth by the organization. The woman on the phone – clearly seeking the opposite answer – told me that their criteria are “more open to interpretation” than those of the Make-A-Wish Foundation.

I mulled this over, as well.

There are other patients in our practice that qualify to have the rules bent a little more in their favor. For instance, there is a child that had to be taken from his home because his father is in jail and his mother has a drug addiction that left her unable to care for him and his diabetes. Foster homes are difficult for ANY child, but even more so for him because few families are willing to undergo the training and devote the time necessary to care for a child with diabetes. His diabetes is holding him back and making his life palpably more difficult – a life that is gut-wrenchingly difficult already.

It made me uncomfortable to tell the foundation representative that I could not sign off on the request, even though this particular patient is living such a full and vibrant life.

“It breaks my heart to have to call them and tell them they were denied,” she said to me.

“I’m sorry. But it breaks my heart even more to use your funds on this request that would be better served for a child that needs it more,” I responded. I signed the denial and faxed the form with resolve.

Nevertheless, I have felt like a grinch ever since.

Time Bomb

Time slips by quietly until you are almost 18 years old. It seems like everyone counts down the days until that big milestone. And when it arrives, you instantly morph from child to (young) adult.

At least in the eyes of the law.

The day a child turns 18 can be bittersweet for pediatric physicians. Graduating a patient from the practice can be difficult to do if a close rapport has been established over many years, or it can be difficult for many other reasons.

Not long ago I treated a patient admitted to the pediatric intensive care unit for diabetic ketoacidosis, but was not familiar with him as he was followed elsewhere for his routine outpatient diabetes care. I looked at the long list of visits that filled his hospital chart and was appalled – in the 4 years since he had been diagnosed with Type 1 Diabetes he had been admitted a handful of times for DKA and had over 10 documented hypoglycemic seizures. There were notes about his ongoing refusal to partake in treatment with psychology or psychiatry despite his family’s pleas and how he would become combative and strong-arm his way out of the hospital. He could not legally sign himself out of the hospital, but his parents were always left with little choice but to sign the discharge papers against medical advice. His relationship with them was so strained over his poorly controlled diabetes that he often lived with friends for weeks on end instead of coming home.

I waited until he was alone in the hospital room to sit down and talk with him. I pointed out the number of admissions he had in 2013 alone, and he corrected me. “It’s actually way more than that, they just haven’t all been at this hospital. I’ve had over 20 hypoglycemic seizures and over 10 admissions for DKA. I feel like I’ve been in the hospital longer than I’ve been out.”

I asked him if he had thoughts of suicide, because his erratic insulin administration (skipping shots and then ultimately overdosing) could very well kill him. He denied suicidality, but his actions spoke louder.

“I just don’t care,” he said as he looked at me. His face was as indifferent as his words.

Looking back down at his chart, I realized he was only a few weeks away from turning 18. This was significant, because in a few short weeks he would have the legal power to refuse all treatment for himself at his will. If he kept going down his current path, he would surely meet a premature death. Our endocrine team discussed the situation with his own endocrinologist and the ICU team. We all agreed that something drastic had to be done while we still had any power over him -- while he was still a minor.

His parents were approached with the idea to admit him to a medical-psychiatric unit and carry through with it even if he fought and argued and refused. They worried about his potential reaction, but knew that his health was dangerously at stake. His parents, desperate for any intervention that would help their son, agreed.

When the patient heard about the plan involving inpatient med-psych treatment, he said no.
When we did not accept that answer, he ripped his IV lines out and headed for the door.
When security blocked him, he tried to fight them off.
When he continued to fight, we had to give him a sedative and transfer him to a unit that rested behind a double set of locking doors.

It felt like a harsh way to handle a person who is almost an adult. But he wasn’t an adult – not yet. After that day, the time leading up to his 18th birthday may have ticked by very slowly for him. But it is our job to ensure that his time keeps ticking at all.

Attachment

Every once in a while, the tables turn and your own life experiences stare back at you. It is an odd feeling, to view things from the other side.

I have been going to the ophthalmologist each week, like a good patient, to patiently sit while he burns my retina. The lasering itself is only slightly uncomfortable (probably more anxiety-driven discomfort than anything else) and is relatively short. Every week my mother calls me on my way to the appointment to wish me well and express her distress over her being so far away from me. Her calls are like a warm hug and ease my pre-appointment jitters. And she is always the first person I call after I’m out, though the conversation is always the same. She expresses her pride that I am doing what I need to do to stay healthy, and then offers to fly up to be with me for the next appointment. It is sweet, but silly.

She did finally fly up to visit with my father, though not because of my eyes. We had long planned a visit over Labor Day weekend with a short stop-over in New York to attend the U.S. Open tennis tournament. It was a wonderful weekend, and I didn’t think about my eyes and the damaged retinas inside of them as they followed those tennis balls back and forth across the tennis court. Things were good.

But over breakfast the next morning I could tell something was wrong - though not with me. My mother looked like she hadn’t slept at all. She told me that throughout the previous day she had seen “floaters” in her right eye and before bed she saw a series of “lightning-like” flashes in her right eye. We only briefly covered common eye problems in medical school, but I remembered enough to be concerned that she was possibly experiencing a retinal detachment.

I quickly called my ophthalmologist and explained, but the doctors were in the operating room that day. The nurse recommended an optometrist that the office trusts, and thanks to some amazing luck he was able and willing to squeeze my mother into his schedule for an urgent dilated eye exam.

As we drove to the appointment, I felt my mother’s stress build the same way mine does before my eye appointments. I held her hand as we walked toward a scenario I thought was only ever going to pertain to me.

I took a seat near my mother’s exam chair and, in an effort to lighten things up, chatted up the optometrist. I joked about how I had been spending so much time with eye doctors lately given my recent diabetic retinopathy. His own eyes widened, and he shared that he has had Type 1 Diabetes for 20 years as well, and that he too is on a pump. Even though it had no bearing on his examination skills, our common bond somehow put me at ease. And he was wonderful with my extremely nervous mother, speaking softly and answering her questions clearly.

Her retina had not detached, but her posterior vitreous had. He explained to her that the gel in the eye shrinks with age, and the vast majority of older people experience this. The shrinking gel causes some pull on the retina, causing the flashes and floaters. She is at risk of retinal detachment as it shrinks further, but the risk is small and it will be caught early if it does happen. It just needs to be watched.

As we walked out of the office, again hand in hand, I better understood why she always wishes she was there with me during my own appointments. Health scares are scary for the whole family, not just the patient.

The tables may have turned on us that day, but I am so grateful I was able to sit right next to her.