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. https://www.theguardian.com/society/2017
/dec/15/america-extreme-poverty-un-special-rapporteur
 
alternatives. 


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. 

https://arleoeye.com


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

Frenemy

~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 Healthcare.gov.  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! 





Saturday, March 30, 2019

Performance Based Management: Life and Death

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

Testing, and living with the results of those tests, is a constant element of living with diabetes. A small plastic case with an eye dropper and a test tube stood prominently on the bathroom counter of my childhood. I’d start the day by peeing in a cup, concocting a mixture of water and urine using the eyedropper, and drop a highly caustic tablet into the test tube. The reaction was immediate: bubbles, heat, and the resulting color to be matched against the chart, recorded in the log and delivered to the doctor during a visit.
https://siwesstudents.wordpress.com/2019/02/20/clinitest/


This everyday routine has evolved into the 5-second blood test I use now. Those daily metrics culminate in the 90-day average of the HbA1c test. When a medical practitioner looks over these results, it often feels like a judgment day. The words I hear are often, “These numbers are too high.” I know I’m on the low range of unacceptable, and I stammer some rationale excuses and justifications while embarrassment, shame, regret, and fear toil and rise to the surface. I am completely below average and have been since I started tracking the results in 1999.


Samuel Rahbar, an Iranian researcher who eventually immigrated to the US, discovered specific hemoglobin anomalies in diabetics and refined the HbA1c test in 1968. The HbA1c is now the standard by which a diabetic’s self-management performance is based. The only way to study for the test is the diligence of every day and the commitment to managing the food, the exercise, and insulin. It’s largely an intuitive charting of math and sensation and recalibrating with the feedback to somehow get back on track when I’ve gone rogue into the landscape of what the hell.


On bad days, this can result in 5 tests a day to try and see how the progress is coming along with mitigation strategies. If the blood sugar is too high, I experience a general sense of stupor and an increased risk of complications. Too low and there’s an experience of unsettledness, panic, and the possibility of loss of consciousness.  The small drop of blood placed carefully on the thin plastic strip is the only way to know if your general intuition is on track. Sometimes it isn’t.


Testing strips are quite expensive in the United States. While the R&D to develop the process to deploy enzymes to measure the electrical energy in the blood was extensive, the manufacturing is cheap. Companies are estimated to generate an 80-90% profit margin on each strip. Constrained by budget, some diabetics base their self-management on a single point in time~like looking at your bank balance as an indicator of quarterly cash flow. The market has evolved a robust gray market for test strips where people can sell their unused strips (paid for by insurers) which sold to people with high-deductible plans looking to save.
https://healthy-ojas.com/diabetes/a1c-glucose-chart.html
Searching for testing strips for my specific meter became a preoccupation during my year-long stint in rural Thailand. Note that I could have replaced my equipment with what was readily available in the country, but I was stubborn and not paid much. Once my American stock ran low, I traveled south on a 5-hour bus ride to explore pharmacies in Bangkok’s various mega malls. Navigating through huge labyrinthian towers escalated through brilliant light and marble, I eventually found the motherlode at the pharmacy (half-price from what I paid in America), stocked up with supply for the next three months, embarked on other errands and sightseeing, returned back to Kampheng Phet.


I embarked on a rigorous regime living on the outskirts of this small rural city and buckled down on limiting testing to the morning and during times of the day when I felt uncertain. But, eventually, my supply again diminished and I had to find a more local alternative. Navigating the winding streets of the small city on my bike, where signs in unfamiliar text and landmarks remained in a hazy uncertainty, were a foray. On one visit to the largest local street market, where the damp burlap bags of croaking frogs on the sidewalks were positioned near their familial corpses sprayed and barbequing across a crux of skewers,  I noticed a larger established pharmacy on the corner. All sorts of medical supplies were packed to the ceiling. As I took it all in and wandered around, my prize sat tucked away in the corner. I had a local supply.


The results of my rigor: eliminating booze and bread, bicycling in the forest refuge every day and, maintaining a quiet, austere, and self-directed experience worked. The A1c reading that I had done just before I left Thailand was a perfect 6.5 and I’d lost 25 pounds. I was living on my own and on the edge,


Chuck Comstock lived as a hell-bent extreme adventurer who, after he died in 2000, was characterized by a mutual acquaintance as dying from “not managing his sugars”. When I lived in Key West in 1989, I remember another fellow pedicab taxi driver who lost consciousness while on the bike and disappeared. A physically unqualified truck driver killed a volunteer driver and a young boy on the Maine Turnpike in 2016. He was diabetic and out of control.

March was rough for self-management. A bit of stress, some bad choices, and an inexplicable, painful flare-up with my teeth created a context for a perfect storm of self doubt. In groping for context, I asked for an HbA1c test and the results were much too high. I increased my insulin dosage, slowed down, and determined to carry on. The tension is always there, the desire for normalcy, the thirst for autonomy and the aim for improvement. Diabetes both defines my life while I stubbornly refuse to compromise my life. Ultimately, I have to stay tuned to the numbers and hope for the best.

https://me.me

Thursday, February 28, 2019

An Introduction

After 50 years of starting every morning with an injection of insulin, I’m now qualified to receive a medal. This year of blog posts are a commemoration. My stories are of ups and downs, both emotionally and physically, of danger and complacency, of adaptation and resilience. I’ve had networks that have saved me and of loneliness that has challenged me. This is my tale.
I hadn't seen this when I named the blog in 2012.
From Leetrussel's Pinterest Board


I’ve had friends who I haven’t seen for a while ask me, “How is your diabetes?” to which I remain hesitant in how I respond. For me, the question reflects an interpretation of diabetes is something outside of myself, a temporary affliction of baggage that I need to carry around until I check in. In fact, diabetes is the secret, invisible ball and chain held within my skin. It’s bourne in life, every day, and never leaves the hidden pocket of my mind. Some days are better than others, but it is always there.



My routine attention to physical being never ends. Like doing the dishes. Every morning with a blood sugar check and an immediate sense of elation (I’m 114, normal!) or resignation (woops, 269, you’re at fault). The high readings sound like the voice of the doctor chiding me a bit for not adhering to the regime and begins the familiar refrain of needing to be better, do better and perform. The day unfolds: injections, coffee, breakfast, and projects.

The routine is impacted by external forces. There are times when you are running hard and things pile up. Perhaps you get sick or there’s stress that sends the sugars rocketing. There are times when you’re distracted and lose sight of the simple stuff, like going for a walk, that should be done every day. When the blood sugars won’t come down after bolusing, my body is the heavy weight of a cast iron skillet that has to wait on the stove until it cools down enough to clean. Then, when it’s ready, I can gently massage with the scrubby, gently season and put back in the cabinet for next time. In general, my dishes are routine but they never end.

http://iamatype1diabetic.wordpress.com

/2013/12/25/thoughts-from-a-diabetic/


In moments of transition, when I am traveling, preparing for a long day away from home or simply embarking on a new activity (and especially with people I don’t know), I am hyper-prepared. I button up, prepare for contingencies and leave the dishrack cleaned out and the bag packed. There are accidents, of course. One day in the Alaskan backcountry on a daylong ski trip with a group of casual friends, in a quick twisty moment and under multiple layers of clothes, the cannula at the end of the tubing for the insulin pump tubing tore away from my flesh.

Grumbling, I dismissed an offer of assistance and I headed off to a private area to bare my bruised stomach in the crisp spring sunshine. Fumbling for the supplies while on my skis, I prepped the site, and jabbed the needle in to get a clean route for the insulin, reconnected the tubing, pumped up to prime, fastened the tape and added some new duct tape for good measure. I took a moment to stretch, pack up and rejoin the group.

For me, living with Type 1 diabetes since 1969 is a constant thread in my life. It can’t be separated from my identity. It’s an obligation to myself and those who love me to stay the course of self-maintenance. I try to aim to the healthy choices, to stay on the path to light even through those moments where I feel a snuffer over the candle of optimism.

I can’t compare myself to other’s experience, but I remember a moment where I felt crystallized in my understanding of living with a chronic, life-long condition. At a political fundraising event for a progressive candidate running for office for the first time, Tim introduced himself and his motivation to run. “I survived cancer.”, he said, “and those of us who have been through that know that it rearranges your priorities”. He nodded to another colleague who also survived. They shared a bond then, an acknowledgment that they hadn’t died despite a horrible disease and a traumatic treatment regime. An experience that I wouldn’t wish on anyone.

At that moment, I realized that there may never be a day when I could be called “Diabetes-free” and see a stage of my life become a fading image in the rearview mirror. My dishes are along for the entire ride. This is mine forever.

What a nice ride I had! I unearthed this photo from the boxes
in my parent's basement and laughed about
the state of my right leg. To this day, still one of
the more scarred parts of my body.