Sunday, December 15, 2019

What Happened at the Beginning

~This is the tenth chapter of my year-long exploration of
living with Type 1 diabetes for 50 years. This is the last in the series. ~

It wasn’t until I was teaching English in Thailand that I finally understood how young I was at 7 years old. That’s when I was diagnosed. It was so simple: a moment that I wasn’t feeling well and didn’t want to go to school. My mother, presciently made me pee in a cup before packing me off to the bus. My dad picked me up at school, a highly unusual circumstance, and told me we needed to go to the hospital. The sky was clear in the parking lot. I can’t remember if he hugged me. But I know, eventually, I got in the car, went to the hospital, and my life changed. 

There were tests. I was admitted for two weeks until I got stabilized. I was taught new skills and practiced using syringes, filled with water, on oranges. I was rehearsing for how to insert the short needles into my body. I was presented with a comic book that cheerily compared my body to a car. Insulin was the gas that allowed my body to process sugar. Clearly, if I wanted to live let alone arrive at any destination, using insulin was my new reality and injecting it was the only solution. 

When I returned home, the shelves were cleared of the stuff that would escalate my blood sugar to unsafe levels. The family adapted. Then, just a couple of weeks later, I was in the kitchen alone when the turkey roast my mother had placed in the oven was done. The timer buzzed and through the glass on the black door, I could see the fat bubbling up from the meat. I decided that I would help. At the moment that the roast tipped, too heavy for my small arms, and spilled the hot fat on my wrist. In searing pain, I knew I, once again, had caused more disruption. 

I was back in the hospital, now in the burn unit. The skin was lifted from my butt to heal the tissue and I needed to stay face down on the bed for a couple of days until it healed.  In the hospital for another three weeks, I remember now an indelible moment. I looked out on the lights of the city below and called my mom in the suburbs just to say hello. That deep, dark longing to be back at home, normal again. When I finally returned to home and school, still bandaged, everyone else knew how to read a clock. I needed to catch up. That’s when the whispers began. I was different, something had happened. There was something more than the bandage, but no one could see.

The next summer, I went to a camp for diabetic girls. There were regimes at the camp. We were forced to collect our urine in large numbered plastic containers, stacked up in varying shades of yellow on a shelf near the bathroom, eventually analyzed but without the results shared with us. One year, I returned with a small bald spot over my forehead from twisting my hair out from the roots. There was a big barn with a huge trampoline and a pond where I learned to inflate my pants as a floatation device and collected the Red Cross swimming achievement cards. 

Despite those glimmers of community with girls like me, there were differences in the remaining 50 weeks of the year.  It was just clear that I couldn’t eat like the rest. Birthday parties involved negotiation with parents. Each overnight outing with the Girl Scouts required my mother’s diligence. By the fifth grade, it appeared that I was isolated. What I remember is that the teacher took me out of the classroom and finally explained to the other students what I needed to do to live. They were nice to me after that, in a fake nice way, somehow things hadn’t changed that much. 

My seven- year old self is still present today, of course, always wondering if my life path evolved the way it did because I live with diabetes. Or, what would have happened if I had more challenging symptoms or made any number of worse choices. 

In this 50th year, I am still alive with relatively few complications. I am strong, moving forward with whatever path remains in the years ahead. I am a survivor.

Friday, November 29, 2019

That Time I Almost Died

~This is the ninth chapter of my year-long exploration of
living with Type 1 diabetes for 50 years.~

My good fortune is not an occasional coincidence or winning the lottery. My kind of luck is a steady force, propelled by an unsettled life of testing limits and pushing boundaries. Often that brings me to the right place at the right time. After living with diabetes for nearly 50 years, I’ve beaten the odds. It is not uncommon for Diabetics to be blind, have lost a foot or a finger from poor circulation, to be suffering from cardiac ailments or liver failure or depression. I’ve had a few rough knocks, but who hasn’t?

Perhaps part of my fortuitousness comes from pursuing the things that I love to do despite the challenges of managing the extra burden of balancing daily medication, exercise, and food.


He asked me to come with him. “You can do it.”, the Boyfriend murmured in my ear as he nuzzled my neck. I was nervous. This was our first big outing as a couple, after a number of day-long ski trips together. He was currently not working, happily living off savings until he found the right fit. I had an intense job. There was always a negotiation with my work demands, flexibility and priorities.

With a steady job with decent health insurance, I’d started to use an insulin pump a few months ago. The small machine delivered insulin through tubes and cannulas that were placed under the skin. I was not sure about this technology, but I’d decided to try. This trip was the first run with it. 

Map of the proposed route 
After more discussion with the Boyfriend, I decided to go. I prepared the skis, sled for supplies, clothing, and contingencies for a four-night trip across the Resurrection Pass in the southern end of the Chugach Mountains. There were public use cabins for each night. The long days of spring season light, snow and relatively warm temperatures were inviting and exciting. I was on the edge of my abilities, but I was strong and determined. It was the four of us- the Boyfriend, his stoner, bipolar athlete friend and the Stoner’s beautiful, fit and petite girlfriend, and me. I was out of shape, clearly out of my league.

We headed up the long slow slog uphill. Very quickly, I had to adjust my clothing and remove layers when I started to sweat. I reduced the amount of insulin delivered by the pump, realizing that the exercise was going to be taxing. Even from the start, it was hard to keep up. My skis weren’t as good as the others, I certainly didn’t have the experience.

Within two hours, my gut felt twisted. The Stoner got impatient, clearly tired of waiting for me to catch up and getting chilled in the process. Finally, they pushed on and left me and the Boyfriend to catch up. I took a minute to check my blood sugar, warming the meter in my armpit first. My blood sugar was high, but I felt that was ok. I took a sip of water. The Boyfriend kissed me on a flat part of the trail, darkness falling as we were surrounded by trees and hoar frost and deep silent space of the winter. The moon shone brightly. Then I vomited the water I’d just drank.

Not me- file photo

It was too late to return to the cars. I had to move forward to the cabin. The Stoner had gone out to gather large trash bags, filling them with snow to melt drinking water. I got settled into the space, stripped down and checked the blood sugar again. It was high but not crazy high. I delivered insulin with the pump. Checked again another hour later. Still high. Changed the pump set, ate dinner. More insulin. Stoner’s girlfriend was supportive and sympathetic. I was thirsty, feeling claustrophobic, the cabin was too hot. We played cards. As the night progressed, I ran outside to vomit repeatedly. In the quiet night outside the cabin, I found myself panting uncontrollably, then retching alongside of the cabin where I could see my pee holes, dark and ominous in the snow.

I was as sick as I had been my entire life. Consumed with doubt, mentally addled by the Ketone poison that was coursing through my blood. A lack of insulin and rigorous exercise created a firestorm. Instead of using insulin and carbohydrate to burn calories, my body was burning fat for energy. The ketones raged.  The acid burned my throat with each vomit. They don’t teach you how to cope with this. The rest of the group tried to sleep, while I was up at least once an hour, tormented by my body and worried about what tomorrow would bring, The gray sky emerged from the dark.

The Stoner grumbled about not being able to sleep. I was weak, exhausted, stiff. Every physical movement was laborious. My blood feeling thick. The glucometer simply registered “HI”, indicating that I was over 500 (normal is 100.) The long valley stretched below the small porch outside of the front door of the cabin. One could see forever in each direction, the mountains stretching out in front and behind. I inhaled a deep breath of clear crisp air. It was a new day.

In an instant, I noted small brown movements. A pack of 13 wolves moved below, a line and in bunches. At times taking small detours for play, they were on the move to points unknown. I opened the cabin door and silently motioned to the Boyfriend to come outside and we stood silently and watched the processing. The Stoner and his girlfriend were inside, obliviously packing. They were committed to carry on and leave us to make our way down the mountain.

I strapped on the skis and tried to take a deep breath before beginning to shuffle forward. Each step like molasses, overcoming huge inertia. My muscles were screaming, unable to move. I had to stop frequently to gather my energy to move again. Trying to move forward would be the only thing that would save my life.  The trailhead was 4 miles, but it was all an easy downhill.

We passed another cabin that we’d detoured around on the way in. The small group who’d stayed there milled about, chatting excitedly about the wolves and cheerily asking, “How is it going?”.  At that moment, I knew that unabashed honesty was called for.  “Not too good.” I rasped (my voice was hoarse from vomiting) “I’m Type 1 diabetic and I think I’m in ketoacidosis”

At that moment, a tall, bearded man looked at me deep in the eyes and said, “I’m an ER doctor. I can help you.” I wept with relief. His friends, nurses and others cleared out their cabin so that I could lie down. The doc came in and we checked the glucose again. The ominous result of “HI”. “You’ll get ten units to start”, he directed. “I’ll stay with you a bit to see how things go.”

Within an hour, my skin gained color again. In the second hour, the meter went from “HI” to 500, a good sign. Over and over again, deliver 10 units, check the glucose. A little Gatorade to replenish. “You’ve been through an internal trauma of some vital organs.” the Doctor said, “Your entire body broke down and poisoned itself.”

After another night in the cabin. I started coming back to life. The next day, we skied out slowly, I was still recovering equilibrium and confidence, but I was on the way to recovery. We made it to the car, drove two hours to his home. I continued to work on replenishing fluids. After about a week I was back to normal but changed forever.

While I’d thought that this experience would be a test for me, perhaps instead it was a test of a relationship that I thought could be lasting. We spent the rest of the weekend together, for the first time, in a haze of recovery and comforting. The relationship didn’t last longer than a year. I was not keen to have children. There turned out to be someone else with stronger chemistry. They married, procreated, moved from Alaska and then divorced. We’ve lost touch, but I'll never forget that experience.

Monday, September 30, 2019


~This is the eighth chapter of my year-long exploration of 
living with Type 1 diabetes for 50 years.~

My parents were triumphant in the success of the last weeks of August after their move.  They busily prepared for a trip to California for my dad’s professional work. My brother was going along for support. Bags were packed, their travel went off without a hitch. Over the next few days, my sister and I got text messages about how great their trip was going. Until it wasn’t. 

Dad fell in the marble-floored lobby of the hotel as they were checking out. Urgent care, then hospital, missed flights. Broken bones on both sides of his body and the logistics unfolding.  In the early morning hours when, with shuttles from my brother in law, the parents finally arrived home from their ordeal and went to bed. 

It was only then that it really began: dealing with all the family dynamics about the care to my parents, trying to maintain my billable hour income and the shuttle of moving from my apartment to the hospital/rehab to dinner with my mom and back to my own place. For three weeks. 

In this effort, one part of my current life purpose in this relocation to Maine was fulfilled. There was work to do, a role to play, and the gratitude flowed. It was a reckoning of my own sense of “payback” that brought me here. I’d lived away for so long, and there have been untold sets of worries and concerns that I engendered over the years. Compounded on all of this,  I’ve always felt that being diabetic was an extra burden for my family. 

There were extra expenses, things my parents did to help me feel better about myself. There were small secrets that the family maintained, like the sugared cereal that I’d found in the cabinet after coming home from camp, that created a space where I felt normal. All of their worry over the years, compounded by a long stage of vagabonding, fizzled relationships, and their perception of my sense of aloneness.

I have always had a lingering sense of feeling apart, disconnected and not like the other. Despite the outer pretenses that I’ve got it together: a great professional approach, connected community, and maintain a busy life with hobbies, I’m still feeling that I’m attending to an obligation with staying in Maine. I dream of what I would do with a life unencumbered, where I could make my way in a different landscape and with a low budget. 

There are tools that I can use~ meditation, a more active reading and less social media, keeping up with exercising and exploring, staying on the path to find the tribe~ but for these coming months, I am feeling myself settling into an uneasy pattern. Waiting.

Saturday, August 31, 2019

My Sweet Smile

~This is the seventh chapter of my year-long exploration of 

living with Type 1 diabetes for 50 years.~

When I have a choice, I will most always try the experience I haven’t had before. Thus, in August, a very kind Doctor with a load of credentials used a Laser Assisted Peri-Implantitis Procedure (LAPIP) on my front teeth. I’m hopeful. 

I wish I could tell you that I lost my four front teeth when an oar hit me in the mouth while running a challenging rapid. In fact, it was a slow burn, a series of circumstances, a tinge of neglect, and youthful misunderstandings that led to their demise.

It’s not uncommon for diabetics to have periodontal problems. There is a two-way relationship: diabetes increases the risk of periodontal problems by as much as 30%. The inflammation elevates blood sugars and in some cases, leads to the progression of kidney disease. 

My issues started young, with a diagnosis of trench mouth and followed by orthodonture, regular cleanings all throughout my childhood, not that many cavities. But now, when dental professionals take a look at my mouth, they are impressed by the level of “work” that’s been done. Crowns, bridges, fillings, and now implants. Earlier this year, the dentist decided a crown needed to be removed to deal with a cavity and it uncovered a bigger problem. It became clear that all the options for this are expensive. I’ve held off until I resolve the issues with my front teeth. 

The extent of my dental work is a badge of class privilege, a lesson I learned early as I made my way out of my middle-class suburban upbringing and into the world. In my first job out of college, as a street-based social worker in downtown Boston, I saw the ravages of the inability to deal with dental issues over and over again. The clients had access to the free dental clinic offered by the agency I worked for, helping with the recurrence of emergencies and maintenance. As an underpaid social worker, I needed to find
 From a story in the Guardian
about the UN special rapporteur
who visited West Virginia on his tour
of poverty in America.
This guy needed root canals
on every tooth.

I found the Tufts School of Dental Medicine in Chinatown. Rows and rows of chairs on the entire second floor. Rounds of would-be dentists hovered over before moving onto the next. They determined that the gums around my front teeth were failing, and they performed osseous surgery to reduce the gaps between the tissue and bone. There were photographs, documentation, and case study. 

Shortly after, I quit my job and started traveling. I’m not sure I understood what I needed to do to maintain my teeth, perhaps the directions weren’t clear or perhaps I wasn’t listening. After a year, I began to have problems. Two large swellings appeared above my front teeth which led to more evaluation, a referral, a treatment plan, and a decision to stay in Boulder while I dealt with the realities. I lived in my sister’s friend’s place, worked three jobs to save money. I was smoking at the time as well, which didn’t help. 

I met Dr. Jacque DeLormier, who laid out the plan. He pulled the front four teeth out and gave me a partial plate to wear. I knit him a sweater for most of the bill. My sister poked fun at me a bit, joking about how my IQ instantly went down when I took my teeth out. The Alaska magazine in his waiting room was my market research for exploring tourism companies to work for. After the winter in Boulder dealing with my teeth and the spring in Big Bend working on the river, I was hired to go north. 

The dental journey continued. I continued to smoke, a very bad idea. The partial was difficult to deal with in the field and I began to have fiery irritation on the roof of my mouth. After the partial plate failed while I was in graduate school in Boston 15 years later, I found a dentist who built me a bridge, connecting across my canines. Then, finding lovely Dr. Bunhean in Cambodia, who performed two implant surgeries, affixed crowns and dental cleanings for a fraction of the cost of what it would have cost me in the states. 

These recurring problems are traumatic. In stressful times, these are the first thing that begins to freak me out, carrying on the cycle over and over again. I have recurring, nagging thoughts that something is wrong has gone awry with the LAPIP, thinking now that instead of new tissue being regenerated in these early weeks, that once again I’ve sabotaged the best-laid plan. 

In response, I’ve begun to deploy is to think positively, reassure myself that everything is healing as it should. That there is a reason why I am here in Maine at this moment in time. Like diabetes, periodontal disease will be my constant companion on the journey of life, with complications that need to be managed, diligently and with each small step of healthy choices and routine. 

Tuesday, July 30, 2019

Days of Future Past

~This is the sixth chapter of my year-long exploration of 
living with Type 1 diabetes for 50 years.~

When times get tough,  I think about going. I linger over the dreamy opportunity of what might happen next after my work is done in Maine. I have fantasies about palm trees and perfectly ripe bananas the length of my middle finger and the highlights of being in a different culture. I long to live in a place that’s interesting, inexpensive, and relatively easy to navigate. The thought of returning to an expatriate life has become a lodestar in these times of stress.
Early days networking in Cambodia,
posing with a princess. 

Now that the parental move is completed, a major scope of work delivered, and the summer days beginning to end earlier, I am mulling over what might evolve moving forward. I think about the usual goals: getting more exercise, losing weight, trying to meet more people, exploring the state.

However, as I age and even in the three years since I have returned to the U.S., I’ve been witnessing increased issues with my health. I’ve gained weight and commonly drive upwards of 100 miles per week.  My teeth are crumbling while my gums are receding. My lungs wheeze after just a walk up the stairs or when walking downtown. On this issue, I give myself a break that I frequently carry a heavy bag filled with an "office", but I mentioned it on a recent check-up.  After an x-ray, they found "volume loss" and I was referred for a CT scan. The insurance company denied the claim. Without knowing, I worry now that I will be more dependent on inhalers just to breathe, just like I need insulin to live. 

The U.S, health insurance system makes me want to bolt for points north, south, east or west. Anywhere but here. My thinking, at this time, isn’t to set down deep roots, it’s about positioning myself nimbly so that I can take off when the time is right. Even in the beloved Casa Del Fuego in Anchorage, I always purchased small pieces of art in preparation for leaving. I came to Maine with a 7-year horizon to transition onward. I’m in that halfway space now, a good time for evaluation. 

If I can not let myself get too out of shape and unwell, that perhaps I can find a path back to an overseas adventurous life of doing good work in a different culture. The series of challenges that kept me to the path of increased attention to well-being (and writing).  It's feeling different here in the small town of Brunswick, a culture of staid pudginess and regulations amid an incomprehensible national landscape.

On the check-up, the primary care doctor also referred me for a consultation with a retinal specialist. Many diabetics have issues with deteriorating blood vessels in the eye. After last year’s annual exam, the quirky local optometrist thought he found something. My eyeballs were dilated, photographed and examined under painfully bright light, and I was pronounced remarkably clear for the length of time I've been diabetic. No further need for a specialist until something else changed.

With that hope and the prospect of a week-long river trip starting in early August, I have shifted my perspective. Despite the realities of aging and the other crap I live with on a daily basis, that perhaps I can rejoice in my past experiences and talents and bring them into a new future. Perhaps after the next step, I’ll consider stashing a small RV trailer for the special belongings and buy a pickup to keep my connection to Maine.

Aspiring to this future is the tool to live with the mundanity of the present. But, as with the common theme of my life, staying connected to goals and choices in daily life can be a challenge. It all circles back, like the river.

Sunday, June 30, 2019


~This is the fifth chapter of my year-long exploration of 
living with type 1 diabetes for 50 years.~

The time between mid-May and the end of June felt stressful. I was leading more than a few work engagements, including a surge in volunteer community commitments.  My Dad was hospitalized and shortly after my parents rallied to work on preparing their house for sale, which entailed a flurry of extra chores and supports to getting appointments booked and household items organized. My previous landlord kept a portion of my security deposit for damages I didn’t think I caused, but it wasn’t worth the argument. My current landlord gave notice that he was selling the apartment building after I had just moved in April. In this craziness of daily life, I found myself turning to alcohol as a way to dull the pressures of the day. I got attached to the crack of a beer can, and then gained weight from associated overeating. I bloated, tossed and turned in fitful sleep, and woke most mornings feeling regretful and tired.

It’s a familiar pattern. After a childhood of feeling alienated and bullied with an invisible condition and labeled “emotionally troubled” in the medical records of the time, I finally felt I belonged in a secret gaggle of girls. There was an arrangement with an older brother, and the six-pack of warm Old Milwaukee beer was delivered. The boys chuckled to themselves as we each opened up a can to toast our first taste of alcohol at 15. I had joined. 

Episode after episode of drinking and drugs too numerous to list remain as fragments of memories of high school. Themes emerge through the fog: hiding out with kegs of beer in wooded areas, fending off inappropriate overtures, careening, high and ramped up, through Rush and Frank Zappa concerts. My parents traveled often. On one trip, I kept my grandmother up nearly all night when I did hallucinogens. On another, I hosted a 2-keg party and cars lined up far down the suburban street of my youth. I ended up busting up a drunk boy argument in the living room while my sibs waited it out behind locked doors. We embodied teenage wasteland, ameliorating the vast self-perceived angst of conformity and lack of purpose in a neighborhood that parents thought was safe. Maybe they thought I was okay because I was going out with friends. 

The affable and interested police officer who moonlighted security at the Mall accompanied me to the night drop at the bank in the parking lot when I closed the Hickory Farms Cheese store by myself.  On patrol, he recognized my car one night after I was drinking at the Blind Pig Pub with friends. An acquaintance twice removed lifted a few blank college ID cards from her mother who worked at Vassar. We just ironed our photographs into the card and called ourselves 18. Those were different times. 

He noted me driving alone, noted I’d been drinking, and asserted to follow me home in his patrol car. I still remember the feeling of the tail lights passing me by as I pulled into the driveway. Other rides home were not as safe. 

Booze and drugs opened up a whole new world of possibilities for my social life and since then has repeated itself throughout facets of my life in days. Drinking barley sodas with the boys after a day on the river, too many margaritas and giggling with friends, intoxicated lakeside beach parties in the endless summer of Alaskan summer, jumbo bottles of Toro D’oro with friends in Juneau. When I bought the house in Anchorage and lived by myself for a while I was doing renovations, my behavior shifted.  

I found myself drinking alone, a lot. There was the friendly click of ice cubes and whiskey, swilled down on the back porch in the waning evening light of summer. I found myself being attached to the bottle as a way to check out from the endless level of things I needed to do and the loneliness of being a bit isolated. I didn't want
Maine has a fantastic array of breweries. 
to go out and spend money at the bar. 

Now that I am living alone for the first time in a few years,  the sensation has returned. The emotional attachment is tugging me down, landing around my belly in soft regret and stagnation. In the heat of the summer, I am needing to perform my own sweat lodge.

For this part of July and for as long as I can, I’ll stop drinking. I know this will regain equilibrium and un-tap the creative spirit. I finally unpacked the last boxes from the move- my tucked away journals are now chronologically organized on a shelf. The commitment I made, in the unpacking, was to not move them again. I’m going to re-read, get thoughts collected, summarized, transcribed, scanned and put into the my timeline of life. I don’t need to carry them around anymore. Party on!

Friday, May 31, 2019

Old Stuff

~This is the fourth chapter of my year-long exploration of
living with type 1 diabetes for 50 years.~

After three years of moving-related transitions, I finally have my own apartment and initiated the process of unpacking and creating my nest. There’s art on the walls: funky stuff from my freelance river chick vagabond days, small things from Alaska, gifts from Cambodia, and pieces that I’ve inherited.  I finally found my Qiviut smoke ring ~a gift from a friend that I thought had gone missing~ and continue to wonder why I moved a set of ceramic mixing bowls, the largest of broke in transit. I’m evaluating furniture purchase (anything that folds up is a score) and considering the elements of design in a small space.
Can I say how thrilled I am with my new toolbox?
Thrift shop score that made my heart flutter.
Bought a hammer for $2 to hang the pictures. 

With all my belongings in one place for the first time since I sold my house in July 2014, I am "buffing out" a few items that I need for daily life. Flatware, water kettle, and kitchen linens have been acquired. People told me that I needed to attend the Midcoast Hospital Auxilliary “Grand and Glorious Yard Sale” event, at three large empty spaces in a struggling mall.

The only window to attend the “pre-opening” on Friday evening and thus I paid the $25 admission fee. Remnants of lives and stuff no longer needed was piled everywhere: knick-knacks, garage & garden, furniture, antiques. Hordes of people grabbed items to put into their bags. Creepy wooden carvings and piles of plastic crap scattered through stacks of picture frames and old cooking utensils. As I focused on looking for things on my list, I overheard more than one person say, “I don’t need this but it’s so [fill in the blank]”. There was no time to hesitate and the desperation bordered on contagious. After securing items that I needed or wanted, I felt bruised by encounters of humanity. This process of homebuilding has forced me to re-evaluate the role of objects in my life.

In happenstance or by Facebook algorithms, I came across an article from the Atlantic about Diabetics using old insulin pumps to engineer an artificial pancreas. The system involves an open-source, algorithm-based app on a smartphone (called Loop), a discontinued insulin pump (with older software), a continuous glucose monitor (CGM) and an invented transmitter device called a “Rileylink”. The inventor’s daughter lives with T1 and is named Riley.  

Minutes after finishing the article, I rummaged through a duffle bag to lay hands on the $5,000 pump (purchased in 2007 when I had insurance) and then dived into research. RileyLink ensures that the data from the GCM is transmitting to the app, which then directs the pump to adjust basal insulin levels and correct the crazy stuff that can happen when life is unpredictable. Diabetics still need to tell the pump to deliver insulin at mealtimes, but the everyday routine of daily tracking particularly for diabetics that experience night-time low blood sugars is eliminated.

It’s revolutionary, experimental technology developed by people who dedicated extraordinary amounts of time and testing to develop Loop. I checked the software on my old pump. It is Loop-compatible, meaning that I could either get the whole system set up and running (involving a number of purchases including an iPhone and lots of disposable supplies) or, I could sell it to someone and change their life.

I’m still on the fence. Moving into Loop would mean more expense, more attachment to devices and tech, and all the things I hated about being on the pump. But it might give me more insights, reduce the worries and diligence of maintaining a healthy A1c, and be a learning curve as I move into this next step.  I'm still thinking about it, searching for cheap folding furniture, and looking forward to the next treasure I unearth from the boxes.

Tuesday, April 30, 2019

The Exorbitant Elixir

~This is the third chapter of my year-long exploration of

living with type 1 diabetes for 50 years.~

Not unsurprising for northern climes, midcoast Maine had a snowstorm in early April during which there was a palpable sense of discouragement in the air. After the sunny and temperate weather the week before, people around me expressed disappointment and resignation. It has been a quite cold and wet spring. Rivers are flooding, plants are still barely emerging, and we are all longing for sunny weather and the heat of summer.

On the same spring snow day, I had unexpected news myself. I’d refilled my prescription for Levemir, long-acting insulin of which I take by injection twice daily. The text message confirmed the cost was $317 for one month's supply. I was perplexed. After a phone call to Harvard Pilgrim Health Care, I learned that my insurance deductible increased from $750 to $4,500 a year.

With a welcome surge in my business, my income tipped over $40,000 a year in adjusted gross income in 2018. That meant I lost the low-income subsidy that I’d enjoyed since I returned from Cambodia in 2016. That’s okay. I’d rather be working.

I settled up the tax bill with the Feds and reported the change to  Now, in addition to doubling my premium to $1,000 a month, the deductible went up to 600%. High-deductible plans are a killer, literally. Just last week NPR ran a story about potential delays in diagnosis and access to medication that often resulted from high deductible plans. People in the middle-class often don’t qualify for rebates, patient assistance programs or other workarounds that exist as either a corporate marketing ploy or a charitable entity. With a dependence on expensive medication to survive, diabetics are particularly vulnerable.

Canadian scientists Banting, Collip, and Best, who discovered insulin, sold the patent in 1921 to the University of Toronto for $1 each. They believed that no profit should be derived from it. In my childhood, insulin was harvested from cows and pigs. Eli Lilly developed the first use of recombinant DNA technology to produce synthetic insulin (Humulin) in 1982. These high-tech medications are specifically formulated for different levels of duration and use. Generally, they work better for diabetics and have addressed the ever-expanding market needs generated by the increase in the number of Type 1 and Type 2 diabetics using insulin. However, the price point hurts.

The rising costs of insulin have generated controversy, especially in recent months. Finally, the American Diabetes Association testified to Congress about the costs of insulin in May 2018. The Attorney General filed a lawsuit accusing drug manufacturers Sanofi SA, Novo Nordisk, and Eli Lilly and Co of deceptively raising prices. In January,  the Health Care Cost Institute released a report that demonstrated, based on an analysis of healthcare claims, that insulin costs have effectively doubled since 2012.

There’s nothing quite like being sent a message that someone else’s profit motive is more important than your ability to navigate the financial realities of staying alive. That is not the case for me, but after 50 years my need for insulin is ingrained in my subconscious. In my guiding days as I prepared for multi-week trips in the Arctic National Wildlife Refuge, I would rise from the deep sleep nightmarish scenario with a terrifying realization I’d left my med kit at home (usually on the plane or the shuttle bus out to the wilderness.)  To mitigate the worry, I would pack and checklist the heck out of the supplies.

About an hour north of my home a  few months ago, on a work trip, I realized at lunchtime that I’d misjudged the amount of insulin left in my plastic pen delivery device. Due in part to being to me being distracted and a profit-driven design flaw from Eli Lilly, 8 remaining units (2 meal doses) in the pen were locked behind the rubber tip. I could have skipped lunch entirely, but instead took a break to head off to the pharmacy. The understanding pharmacist gave me a syringe and was nonchalant about my gratitude. Now, I carry one in the med kit, just in case.
8 units remain. You'd think a modest redesign
of the rubber tip could solve
that problem. 

The tension around accessing our exorbitant elixir, albeit mild in my case, creates just another stressor for the people like me who depend on life-saving medication. I could tell you about the number of campaigns on GoFundMe with insulin in the title (6,567) or that it’s reported that 1 in 4 diabetics are rationing insulin because of the cost, or by 2030 its projected that that half of the people who will need insulin (the market is growing in Africa and Asia) will not be able to afford it. I know my story is repeated in thousands of ways and across the U.S. and in developing countries.  In Cambodia, I could purchase insulin from a well-regarded pharmacy for about $30 a bottle. But there were poor people who couldn’t afford that. This situation feels like the rainy, cold weather we continue to have as April has come to close. The tree buds are closed up tight, holding their energy in until there is a promise of a warmer stretch.

However, I found my crocus. By pure happenstance, I found a secret, underground market for insulin. PK, who died at 63, had a family that cared enough to find a clearinghouse. The unused, unexpired and unopened vials and pens of insulin are collected by someone who finds the people that need it. I was able to procure a few months supply for a modest donation. If you read this and need help with insulin costs, let’s talk.

(Photo by Deanna Hartel, Lincolnville)
Courtesy of The Free Press
Taken after our spring snow!