day 5: MY diabetes

On November 15, 2018November 15, 2018 By ZephyrIn Diabetic Complications, Diabetic Ketoacidosis, Diabetic Lifestyle, hospital visit, hyperglycemia, hypoglycemia, insulin-dependence, invisible disability, Type 1 Diabetes, Type 1.5 Diabetes, Type LADALeave a comment

Diabetes.

I wonder what my life would be like today if I did not have diabetes.

I would be employed. If diabetes had never entered into my existence I would most likely be employed as a middle school Social Studies teacher either somewhere in the Bay Area (probably Oakland) or in Reno. I would work during the school year, volunteer my time helping my community, climb in the local gym with my friends, and climb outside on the weekends with those same friends. That was the life I expected to create when I first moved to the South Bay Area in 2003. As a result of the opportunities I experienced while living in the South Bay, there is a good chance I would still be working as a mountain guide in southern Yosemite during the summer seasons as well.

I think I would be married. In fact, I know who my soul mate was that I should’ve had children with, but Life tore that possibility away from me with more devastation than simple diabetes. I will live the duration of my life with conviction about the primordial axiom: LIFE IS NEVER FAIR.

Those are the two biggest sacrifices I believe I have had to make because of my diabetes: career and family. Instead, I find myself having to imagine a new life for my future. Diabetes effectively killed my ability to begin a career in education during my early thirties. Now, in my early forties, I find myself struggling to want the same life I had imagined over a decade ago. The life I want to live now centers around the mandatory routines I must perform in order to feel healthy and to have the physiological capacity to accomplish the routines of daily life.

My diabetes has never been easy to manage. All the facts listed about diabetes in the medical literature sometimes fail to be accurate in my personal experience.

Last January, I was in the hospital for Diabetic Ketoacidosis caused by Influenza. It was a condition where my blood glucose levels had become so high they made me very sick. I spent two nights and two days in the ICU until my glucose levels were brought back down into range, and the dangerous ketones in my blood were flushed out of my system. By evening of the second day, a bed finally opened up and I was transferred to a room in the main ward, with the expectation that I would be released from the hospital in a couple of days.

I closed my eyes that night believing I would sleep, wake up, eat breakfast, talk to my doctor, and then get well enough to leave the hospital the next day. Instead, I woke up around 1:00 in the morning feeling sick from high blood sugar. My nurse came and, after checking my blood sugar, we learned that it had risen above 250 (100-120 is considered to be a ‘bull’s eye’ target range for us diabetics). Blood sugar levels, according to the medical literature, rise only when carbohydrates are eaten (the medical community has only recently begun to understand the connections between glucose levels and stress). I had not eaten anything and my stress levels were lowered because of the treatment I believed I was receiving. So, why was my blood sugar steadily climbing? Why was my liver kicking out glucose into my system while I was peacefully sleeping? These are questions no one has ever been able to answer for me.

What I do know is what happened next:

My nurse called the nighttime on-call doctor to get permission for administering insulin to lower my glucose levels. My nurse was amazing! He did everything in his power to try and help me. In fact, my nurse was a Type 1 as well (diagnosed at the age of 27) who was using a pump. He knew exactly what I was suffering through. He even mentioned how much he wished he could just give me some of his insulin to help, because the nighttime on-call doctor NEVER called back to give permission for my glucose levels to be lowered to a healthier level. We never learned why. No one ever told me why I was allowed to lay in my hospital bed, the first night out of the ICU for DKA caused by high blood sugar, and have to suffer through the sickness of having my blood sugar climbing uncontrollably. By shift change at 7am, my day nurse arrived in time to hand me my second vomit bag for the morning because I was uncontrollably nauseous–AGAIN!

The daytime doctor finally arrived to begin her workday and managed to prescribe me some corrective insulin, but I was now required to stay in the hospital another night because my blood sugars were out of range. Also, by this time, my electrolytes were wacked and needed to be replaced. I was put on a magnesium drip that was expected to finish in a few hours, but it burned so bad going into my arms I could only handle the pain for an hour or so at a time. We were constantly moving the IV between my arms. It was the first time I have ever needed to have more than one IV. I finally managed to finish the magnesium bag by the end of the day.

I spent two more days in the hospital because my doctors were incapable of bringing my blood sugar levels down into an ‘acceptable’ range. I was not able to administer my own insulin intake because my pump resevoir was empty (a mistake I will never make again!) and I was reliant upon the doctors to administer the ‘correct’ amount of insulin for my health needs. The problem with relying upon doctors is that they follow the ‘established medical guidelines’ as to how much insulin to administer. Again, the problem being that I do not always fit into the ‘acceptable target range’ of what the doctors expect from Diabetes. The amounts of insulin they were providing me with were simply insufficient to the task of lowering my glucose levels.

***Here is the crux of my agitation with the medical community: they are terrified of insulin! My doctors were so afraid of administering too much insulin, and dropping me into hypoglycemia, that they were simply unwilling to listen to ME and give me the amounts that I KNEW to be what I needed!***

I feel justified in making this statement: I KNOW MORE ABOUT MY DIABETES THAN THE DOCTORS EVER WILL.

I don’t remember my second night on the ward, but I do remember my blood sugars never lowering into range during my second day spent in that ward. My third night, however, was spent with a different nurse and I remember this night very well. By this time my doctor had left a standing order for insulin to be administered when needed. My new nurse was not a native english speaker. I freely admit I pushed her for the right to determine how much insulin I was administered. When I ate dinner that night, I estimated the carb count for my meal and entered the numbers into my pump for the Wizard program to do the math. The hospital menu I was allowed to order from (as a diabetic) had the carb count of each item listed. As a diabetic, I was allowed to only order so many carbs at a time. I ignored the damn menu’s carb count. It did not match the estimate of carbs that I had learned to make over the years by looking at the food I was going to eat in front of me, and then determining how each item of food may affect my blood sugars from past experience. I told my nurse to give me the amount of insulin suggested by my pump. I had to round the number up to the next whole amount because syringes are incapable of providing the small amounts of insulin the precision of a pump can deliver.

My next blood check was two hours after I ate and my number was not too high. The nurse wanted to wait another three hours before checking again, but I told her to come back in an hour before I went to sleep. I was not using my own test strips because I only had two left (another mistake I will never make again!) and I needed them for the ride home once I would be allowed to leave the hospital. In an hour my blood sugar had dropped to 75, which is close to technically being labeled as hypoglycemia, but is also typical in my daily life experience. I asked the nurse for some ’emergency’ carbs and she brought me two pieces of toast and some peanut butter. I could tell how nervous she was from my blood sugar being so low. Maybe she was simply worried because she had allowed me to tell her how much insulin to administer rather than giving me the amount the doctor expected for the meal I ate, but I am used to this nervous reaction from medical professsionals when confronted with a glucose level ‘too low’ for their comfort.

Knowing my diabetes as intimately as I do, I knew only one piece of toast with peanut butter would be sufficient. The nurse was worried that I didn’t eat the second piece, but I comforted her by telling her I would keep the toast next to my bed in case I needed it later. Now that she knew I had corrrected my low with the ‘correct’ carbohydrates my nurse felt safe leaving me alone for the night. The doctor had required my blood to be checked every three hours, but I told her to come back in an hour and wake me up to check my blood again. I am not ashamed to admit I pushed the nurse again for my healthcare to be provided to me the way I needed it to be. And it was a good thing that I did push her because, within that single hour, my blood sugar had risen to 170 from a single slice of bread, and I needed to tell the nurse how much corrective insulin to administer. This time I was confident enough to let her wait the three hours to check my blood like the doctor had determined.

During the rest of the night my glucose stayed steady and in range. When I had my first check in the morning before the doctor came in I was at a beautiful and healthy 117! All because of my determination to ignore everything the doctor wanted to be done for me. Unfortunately, I had to remain in the hospital for the entire day because I allowed the doctor to make the determination for my insulin during the daylight hours. . . and my sugars never came back down into range after my first meal of the day. In fact, I only ate two small meals that entire day, and my glucose levels never reached my target range because of my doctors unwillingness to listen to me when I tried to tell her how much insulin I should be given.

By five o’clock that evening I firmly informed the doctor I was leaving the hospital despite her belief I should stay another night for observation. I told the doctor that the only time my blood sugar levels had been stable during my entire stay under her care had been during the previous night when I had been in complete control of my diabetes. This was not the first time I have had to call out a medical professional for treating diabetes as if it were a cookie-cutter disease that affects everyone in exactly the same way, nor do I expect it will be the last, but it was the first time I ever forcibly had to advocate for myself with the belief that I do know more than my doctor about how to manage MY diabetes.

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The life I now live is a Diabetic Life. It is the only life I will ever know for the rest of my life. I have no option to live any other kind of life. Diabetes is my lot in life. Fortunately for me, I am learning how to live my life as a healthy diabetic with my blood sugars under control. It was my nine years spent working at the pool that allowed me the opportunity to learn how my diabetic life would be able to work for me. Without my experiences at the pool forcing me to become more aware of the effects diabetes has upon my personality, I believe there are several emotional and behavioral manifestations of my diabetes, and the way it affects the people around me, that I would still be ignorant of and incapable of mitigating within my public and social spheres.

I am grateful for my experiences at the pool. I am a better person for having had to deal with all the struggles. I have a clearer understanding of who I am and what I need in order to be healthy. I have gained a secure level of self-confidence I do not believe I would be capable of without having had the experience of fighting for my survival in an environment of pervasive harassment. The pool created a crucible in which my comprehension of what it means to live a diabetic life led me to recognize and become aware of the hidden and confusing ways in which discrimination can manifest itself in our daily lives. Learning to navigate the various forms of gender and racial discrimination I face everyday as a black woman were nothing compared to the experience of being discriminated against because of my invisible disability. Simply coming to the realization that I am in actuality ‘disabled‘ was a trial of self-awareness I may never have accomplished without my experiences at the pool.

I am not sharing my story to hurt the pool, or the people still working there. My goal is nothing more than to make the pool a better place to work. I want the pool to be a place where a black woman with diabetes can safely work without being hassled by her bosses for being a ‘bitch.’ Period.

Day 4: Diabetes (part 1)

On November 13, 2018November 14, 2018 By ZephyrIn diabetes diagnosis, Diabetic Lifestyle, disability discrimination, Type 1 Diabetes, Type 1.5 Diabetes, Type LADALeave a comment

I went to work at the pool because of Diabetes. I remained employed at the pool for nine years because of Diabetes. I allowed myself to suffer severe and pervasive harassment and discrimination for six years because of Diabetes.

Diabetes scares me more than the evil natural by-product of blind ignorance produced by the likes of Red, Fryer, Dale, Bill, Amanda, and every other individual working for the Park District combined ever possibly can. None of them can end my life. They have definitely made my life more difficult, stressful, unbearable, and unhealthy then it now is without them in it, but, with the help of the Park District, and my experience surviving there, I have finally learned how my diabetes works.

I first started this blog as a way to chronicle the shift of thinking about myself as being diabetic to thinking of myself as diabetic. It was a depth of acceptance that had eluded me for almost ten years. Reading back over my first few posts I can still read the frustration and anger resulting from my diagnosis in my words. I have managed to survive long enough to spend a quarter of my current lifespan as a diabetic. It is a trend I am hoping to continue for the next half of my life. Social survival at the pool was always secondary to the survival of my life.

The irony of insulin-dependent diabetes is equally as beautiful as the moment of handing Fryer the key while he was in his swim suit. But, I fear it is an irony that only people intimately involved with insulin are ever truly able to appreciate. For those of you reading who aren’t familiar with insulin, or Diabetes in general, I am going to spend the next couple hours (before my friend cooks me dinner tonight) briefly explaining the different ‘types’ of Diabetes so later I may hopefully be able to explain in detail the intricacy of insulin-dependent (or Type 1) diabetes, so you may have a better understanding of my disability and how I was able to be discriminated against for my disability at the pool by the administration of the Park District.

There are two types of Diabetes that are mentioned in the media, of which most people unassociated with the disease in general are aware of the one called Type 2, also usually labeled as ‘adult onset.’ It is the version of diabetes that most people have some kind of connection to, mostly with an older relative who has, or had, Diabetes. I prefer to label Type 2 diabetes as ‘insulin-resistant diabetes’ only because many people with it might be able to manage the disease with exercise, diet, and lifestyle changes. Insulin-resistant diabetes can even have a timeframe, early in the development of the disease (called ‘pre-diabetes’), when a person can ultimately (hopefully) erradicate the effects of the disease by simply changing what they eat, how much they eat, and with increasing their exercise. Insulin-dependent diabetes does NOT have an escape. It does not matter how much I change my diet or lifestyle, I will always be dependent upon insulin until the day I die.

Everyone (and I do mean EVERYONE) with insulin-resistant diabetes gets sick in their adulthood. Okay, wait . . . this might not truly be an honest statement. Especially with the increase in childhood obesity, because it is obesity, and sedentary habits, that are the crux of becoming an insulin-resistant individual. With obesity comes the body’s inability to utilize insulin correctly. The pancreas still merrily produces enough insulin to cover the body’s needs, but the cells become unable to use the insulin correctly. The simple explanation that comes in all the literature explaining Diabetes is that food is converted into glucose, which is the fuel that keeps our body and brain functioning. Cells need to use the glucose that ends up in our bloodstream to work. Period. Without glucose our body begins to fail and we die. Period. The problem with insulin-resistance is that the cells become unable to take in the fuel they need because insulin is the ‘key’ that unlocks the cell to allow glucose in. The cells are ‘resistant’ to the insulin produced by the body.

There, that is as technical as I’m going to get right now. To reiterate, insulin-resistance is when the pancreas produces insulin that the body’s cells are unable to use properly and the person gets sick. With the help of medication, an insulin-resistant person can begin to utilize the insulin within their body and become healthier. Exercise helps cells to utilize insulin. The more exercise, the less resistance.

Insulin-dependence is very different. First, the problem does not start with our lifestyle or body-type. Insulin-dependence begins when the immune system attacks the cells in the pancreas that produce insulin. The pancreas, in time, becomes unable to produce enough insulin for our bodies to stay alive. Before the discovery of insulin in the early 1920s, insulin-dependent (Type 1) diabetes was 100% fatal. It is an auto-immune disease, which insulin-resistant (Type 2) diabetes is not. It makes no difference how obese we are or how little we exercise. The unavoidable fact is that our pancreas NO LONGER PRODUCES INSULIN. Period. Without insulin we die. Period.

Now the explanation begins to become more complicated, and I’m not going to go deeply into details today, but there are soooo many more factors involving Diabetes then the two very simplified explanations that I’ve just provided. For one thing, there are more than two types of diabetes, the most other widely encountered version being gestational diabetes. But none of those versions affect me and how I manage to live with my diabetes. The two explanations I’ve provided above are the basic building blocks to begin understanding the manifestation of my diabetes, which, let’s be honest, is the whole point of this blog in the first place.

MY diabetes is labeled as Latent Autoimmune Diabetes in Adults (LADA). I have not been ‘officially’ diagnosed with LADA. My official diagnosis is Type 1 Diabetes (insulin-dependent). I was mis-diagnosed as Type 2 in the beginning because of my age being 32. Like I said earlier, it is adults who become sick with Type 2. Insulin-dependent diabetes used to have the more commonly known name of ‘juvenile diabetes’ because it was ALWAYS children who became sick with an autoimmune disease causing insulin-dependence. Juvenile-onset diabetes happens quickly. Within a matter of months, or even weeks, parents will watch their young child become lethargic, skinny, and sick. It is that first trip to the Emergency Room when they learn that their child is now diabetic and needs to manage being on insulin for the rest of their life. It is as close to a death sentance you can honestly receive while still being alive.

***Here’s the kicker: insulin is needed to stay alive, but take too much (just a drop too much) and you run the risk of seizure, coma, and death.***

The problem with Diabetes is that it allows your blood glucose levels to rise too high. Too much glucose floating around in the bloodstream will begin to destroy certain physiological structures. The most commonly kown side-effect of ‘diabetes’ is losing a foot. Or any appendage. High blood sugar destroys blood vessels. It restricts the ability for blood to flow in a healthy manner to the extremities. Amputations are a ‘common’ complication of Diabetes. High blood sugar can also cause blindness, heart disease, kidney failure, liver dysfunction, etc., etc. Since my diagnosis, I have noticed a distinct reduction in my ability to heal a simple cut on my leg without creating a nasty looking scar.

I need to wrap up my beginning of this chapter for today because I need to go home and get my fiddle ready to go to my friend’s house for a pleasant night of recitals and dinner. But I want to leave you with this one idea to ponder until tomorrow when I have time to finish this chapter: I have described two very different types of diseases that share a common name, but have distinctly different origins. One is a disease of the metabolism, while the other is autoimmune. Both of these diseases are deadly. Both can cause great and tremendous bodily harm. Both are emotionally traumatic to be diagnosed with. Both need constant and diligent attention to detail in order to manage living a ‘healthy’ life. They are different, but they are the same.

Tomorrow I will share some of the traits that both versions of Diabetes have in common, and how those commonalities affect me and my ability to learn how to survive living with insulin-dependent diabetes.

Have a wonderful evening!

Day 3: The Darkside

On November 12, 2018 By ZephyrIn Diabetic Lifestyle, disability discrimination, gender discrimination, Liberation, racism, sexism, and other isms, sexual harassment2 Comments

Everything has a darkside. Everything. Not just the Park District, the Force, or the moon.

I have a darkside. It has gotten me into trouble many, many times. It is the Yang to my Yin. The flip to my flop. It is an undercooked hotdog served with a slice of Wonder bread. It is the side of existence that we avoid and ignore with what little passion we have left in our hearts after spending our days working at jobs that simply don’t pay us enough to breath.

I’ve only begun to tell the darkside of my story. It amazes me to think this is only the third post I have written in my new life as a writer. I’m not exactly sure what this new life will look like, but I am certain it will be filled with the love, joy and support that I have been receiving from my friends and family. My parents are helping to pay for my rent and holiday travel, my brother is helping to pay my electricity bill, and I have been saving and preparing for this moment since August of 2017 when Fryer and Dale tried to scare me into quitting by threatening me with a bad reference if I were to stay and receive one more complaint. I was ambushed for that meeting. It was not the first ambush I have survived while working there, but when they tried to ambush me again last Tuesday — I quit.

And walked away with peace and joy in my heart.

I had hoped I would be able to survive working and receiving a reliable paycheck until I could respectfully put in my two-weeks notice, but that option was ripped away from me and I was forced to walk out on the spot. There was no drama. I did everything in my power to avoid making a scene and causing a fuss… other than the fuss caused by the fact that my boss had no one but himself to cover my shift.

The inherent irony of the moment when I quit is a thing of pure beauty. To put it succinctly, Fryer has been forced to work a shift as a lifeguard, for the past month or so, ever since the woman working the day shift with me suddenly quit with barely a two week notice. Fryer conducted a quick ‘mini’ lifeguard class in order to hire two senior men who are regular patrons at the pool to cover his shift, yet one of the men quit before he was hired and Fryer still had to guard, albeit a shorter shift. Two days after the new guy was finally ready to work by himself was the day I quit. My cherry on top: Fryer spends everyday sitting in the hot tubs or sauna while being scheduled as the Building Supervisor. It is an act that not a single one of the other Building Supervisors are allowed to imitate. Fryer commonly refers to these moments during his workday as his daily “hot tub inspection.” I caught him upstairs as he was in his swimsuit, with his towel over his arm, and headed out to the hot tub to start ‘working’ his shift for the day.

“As repayment for all the years I spent being unfairly mistreated, I am doing this one small unfair act at the most inconvienent moment for you. I quit.”

I handed him my key and rode my bike home for the last time. I could not have planned the timing better if I tried. Life planned it for me.

I had made the decision to quit the night before. The full impact of what Fryer said to me during the middle of my shift on Tuesday did not register at first, but by the time I was home and capable of uninterrupted reflection, I realized I would not ALLOW the Park District one more opportunity to marginalize me. To victimize me by blaming me with unfounded statements and rumors that were NEVER investigated.

It was providential that, a week prior to my decision to quit, a young high school student just beginning her first job working at the pool decided to challenge my authority as her Building Supervisor on an early morning Saturday shift. I had a coworker proofread my texts to her to make certain I was using a proper and respectful ‘voice’ of authority before sending them. When the young lady complained to Fryer about my ‘voice’ in the texts, she offered to let him read them. Fryer declined. On the Saturday in question, I had informed Fryer what was occuring (since he was at the pool doing the ‘mini’ lifeguard lesson), I explained what I had said in my texts, and told him about her snarky reply challenging my authority to chastise her for lack of following procedure (which, it turns out, was the exact same mistake she had made a few days earlier during one of Fryer’s shifts). I offered that Saturday morning to let Fryer read my texts and her reply, but he refused. On Monday, after the young woman complained to Fryer, he had to rotate with me and the first words out of his mouth were, “well, it’s the same old complaint about how you say things.” When I offered to let him read the texts for the second time, he again refused, but said, “keep them though. Just in case it gets worse.”

FAILURE TO INVESTIGATE is the reason I quit my job. Well, that and the fact that I have spent the past six years being labeled a “bitch” because I have had difficulty learning how to control my glucose levels, because I have a hard time recognizing the emotional and behavioral side-effects of my diabetes, because I refused to have sex with Red, because I am assertive and direct, because I am a strong black woman, because I tend to speak my mind, because I intimidate some people with my confidence, and because I have a habit of trying to fix problems on my own without complaining to others.

Like I said, I have a darkside. And it has gotten me in trouble many, many times. This time, however, I used my darkside to discover the ‘voice’ of Liberation hidden deep inside me and buried under years of doubt, fear, anxiety, confusion, trepidation, torment, and anguish. The erosion of my self-esteem during my years of oppression at the pool was an aspect of my employed existence that I was no longer willing to accept. The strength of my personality preserved me through the years of suffering. My darkside has always shown itself as a side of my personality that can be intimidating, authoritative, judgemental, and intolerant.

But, there is always a silver lining to every darkside. The silver lining of my current situation is the support and love I have received from the people who care about me, and the opportunities that have been continuously appearing before me that I would not have been able to capitalize on if I was still employed. The day after I quit I was offered a spot on two different women’s soccer teams, I have been offered professional help with my resume, I have been given links to new job possibilities, and I have uncovered a fathomless depth of energy and enjoyment for my new life, which would never have been possible without my unemployment.

As much as I am enjoying the freedom to live my new Life, I have to face the fact that I will simultaneously find myself in a position of losing as much as I gain. This morning I had to accept losing a friendship because of my actions at the pool. I have not contacted anyone still employed at the pool. I have absolutely no intention of ever going near that place again. The people I enjoyed working with who are still working there will have to be willing to reach out to me. I will not feed my energy into the destructive atmosphere of the pool ever again. Like I said yesterday, the pool is a cult. Supporting my assertion is the fact that I am not the only ex-employee of the cult hiding in town, and unwilling to have contact with anyone at the Park District.

Thursday morning I texted my friend still working at the pool:

I quit the pool yesterday. I waited until Jeff showed up and then handed him my key as he was in his swimsuit headed out to the hot tubs. I said, “As repayment for all the years I spent being unfairly mistreated, I am doing this one small unfair act at the most inconvenient moment for you. I quit.”

I feel good today 🙂

Wanna grab a beer and hear the whole story?

I expected her to be thrilled for me because she has been talking for the past month about how much she wants to quit working at the pool, how unfair the place is, how many problems she has to face during her shifts, and how tired she is of the fact that the pool never changes. I have shared my stories about sexual harassment and discrimination over the years with her. I thought at the very least she would reply with a simple, “wow! I hope everything works out ok.”

Instead, her response was:

I am under the weather

Maybe another time

At the time, I thought it odd that she would use illness as her excuse, only because a few days previously she had called in sick to work at the pool because she was, in her words, “sick of working there” and instead had a beer with me and talked about how much she wanted to quit.

I was hurt, but I did what I always do — I accepted her as the person she is and held my silence in peace. The exact type of response that has allowed me to be in a position of being systemically harassed and discriminated against. After three days of silence from my ‘friend’ I decided to speak up for myself and my hurt feelings. Last night I sent her another text:

I’m confused as to why you haven’t reached out. I tell you I quit the pool and you have nothing to say?? It feels as if you don’t care and, to be honest, that kinda hurts. Are you ok?!? Is the fact that I quit coming between our friendship? I hope not, but I will understand if it has become a problem for you.

This morning I woke up to her reply:

I am not sure how to respond to this. I have been ill for a few days-but… Clearly I am unable to meet your needs as a friend and I have disappointed you. Also, Amanda is coaching staff and this is too close to home for me, don’t you think? But the only thing I can do is respectfully back away because I really don’t know how to support you. I can’t handle any more negativity in my life at the moment and I will leave it at that.

I realized immediately that this person was my last affiliation to the cult and I needed to sever ALL attachment with the pool. In a single text, my ‘friend’ not only gave her support to the power structure of the pool cult by listening to whatever rumors are rampantly spreading among the void left behind by my absence, but she effectively proved that my well-being and happiness were not an issue of importance to her.

It was not difficult for me to find my ‘voice’ of Liberation and to respond to her as kindly and respectfully as possible:

Ok. My quitting had NOTHING to do with Amanda and I have never felt better in my life. I regret the fact that you would rather believe in pool gossip, but I respect your choice. There is no negativity involved for me, but it does sound like you have enough to deal with on your own. As for supporting me as my friend…all I wanted from you was to feel like you cared about me. We could have easily talked about anything else over a beer. I wish you the best of luck 🙂

And now I am truly finished with the pool. I have escaped the cult and I am not damaged by the repercussions of the ostracism inherent within a cult’s culture. I have no fear of not being able to return. I am exactly where I want to be. Darkside included.

Day 2: The Great Cult Escape

On November 12, 2018November 12, 2018 By ZephyrIn gender discrimination, Liberation, racism, sexism, and other isms, sexual harassmentLeave a comment

***Disclaimer: The names of the guilty will not be changed. I will not protect them. I am sharing what happened to me from my perspective. I will share my story.***

I met a good friend from my old job for coffee this morning and we talked for almost four hours. I shared my story of how I quit the pool, what I said to Fryer on my way out the door, and how amazingly Free and Vibrant I feel as a result of my actions.

My friend was born the year after I graduated high school, and I was always in a position of authority whenever we worked together during the past six years. She shared a few stories of her own experiences at work, and she spoke of a time when I scared her with my style of confrontation concerning her performance as a lifeguard.

What I found to be the most interesting revelation from our discussion was her description of our work envirnoment as being the “Cult of the Pool.”

The pool is a cult — Jeff Fryer is not the leader. Dale Weigandt is not the leader. They are simply the old white men who are in charge of administrating the pool.

The pool was built in the early-mid 1950s as part of a Parks and Recreation District separate from the city’s tax base. Santa Clara exists within, and as a part of, our local municipality, but our little neighborhood Park District, on the northern edge of town close to the surrounding rural areas, is an entity of and in itself, supported entirely by local residents. We have our own tax base for financial support, but it is slowly and systematically being reduced in piecemeal parcels by our city government. The District has had to beg its remaining voters for a levy multiple times in order to remain open and functioning.

I love the Park District. My love and respect for the District is what has kept me from hiring a lawyer and from seeking financial recompense for my suffering of harassment and discrimination over the years. The District offers swim lessons, recreational swim times, water exercise, lap swimming, an expanded exercise room, as well as two hot tubs and a sauna. And that is only on the pool side. The dry side of the District offers daycare, Pre-K classes, after-school programs, senior programs, and adult activities and classes to name a few. The surrounding park grounds offer a beautiful setting of towering Douglas Firs with picnic tables in the grass, two shelters for rental, a renovated playground, a skate park, a sand volleyball court, a track and basketball court, and the last functioning wading pool in the entire city — also newly renovated as of last summer from a grant.

The District building also includes several classrooms, a large multi-purpose room for gatherings and exercise classes, a fully functional kitchen, and the main office along with smaller department offices. A few years ago the building was outfitted with solar panels as part of a grant from our local energy provider EWEB. The pool side has been equipped with automated chemical systems for the hot tubs (which tend to fail at regular intervals) and a brand-spanking new UV filtration system for the swimming pool.

All in all, the Park District is an amazing facility and it offers a variety of services that should ultimately be offered in every community throughout our entire nation!

The processes by which the Park District is administered, however . . . that is nothing more than a stubborn remnant of a society born during the post-war boom when women were considered successful if they were married, had dinner cooked on time, and had the kids well-dressed and ready to greet daddy when he got home from work. My two previous bosses, the Aquatics Director and the Park District Superintendent, are men who have been allowed to remain in power within a professional culture lacking oversight, personal responsibility, and an awareness for the social evolution of Equality within the Workplace.

But, back to the main point of the pool being a cult . . .

It is hard to quit the pool. And it can be extremely easy to get sucked back in once you do manage to leave. There is no rhyme or reason as to why it can be hard to leave. We simply get sucked into the pattern of showing up for work and doing our jobs and spending our paychecks. The hardest part, I think, can be the friendships we make while working at the pool. It can be difficult to decide to stop working with the people who laugh with us and believe our stories. The people we work with are the only people in the world who can possibly understand and comprehend the absurdities we experience daily while working for a small neighborhood Park District that is hidden among the most diverse and relatively rural section of town. It is an experience not easily shared with people on the outside who do not have the exposure to our private hell.

I will share an example that was provided by my friend during coffee this morning. A short story to justify my assertion that the pool, and District in general, are stuck in a timewarp that defiantly ignores the social changes swirling around us in our post-modern culture. A story that may help to prove how the forces that can keep a person locked within the surreal confinement of a cult are diligently at work within the pool environment.

My friend shared a story of her own personal encounter with a patron at the pool who easily fits into the category of ‘creepy old man.’ This is a man only a few years older than myself, who was once on the North Eugene High School swim team, and has been swimming at the pool for the past twenty-plus years. I have my own stories of this person’s ‘creepiness,’ but luckily for me, I am of an older generation than my friend, and I have always been able to relate to this particular male on a different level then what was accessible to her at the time of her encounter.

I listened as she told me about a time she was at the pool during her off hours and wearing her swimsuit instead of her uniform. This man asked her for a towel from the back office and, as she turned to get one for him, he put his hand on the bare skin of her back that was exposed from the cut of her one-piece bathing suit. This particular male has grown up swimming at the pool and tends to think of everyone working there as his ‘family.’ The problem was that my friend is too young to think of him as her ‘family’ (let alone a ‘friend’) and she was upset by his blind familiarity. This was not the first time this man had inappropriately touched her without her consent (and made her feel “icky”), but it was the first time she decided to say something.

My friend told the Building Supervisor working that night about the incident and the Building Supervisor was upset. This particular BS is slightly younger than me, but older than my friend, and male. He told the story to Jeff Fryer, the Aquatics Director, who he expected would do something about the incident. Instead, Fryer simply said he told the head swim coach, Bill Kuzmer, about the situation and would let him handle it, since the man in question had swam for Bill during his time in high school twenty-five years prior. The problem, of course, was that Bill is known for doing nothing that would result in a confrontation. Fryer is equally known for doing nothing when it comes to any form of confrontation. As a result, we have all learned over the years to not bother informing the ‘men in power’ of the problems we face as young lifeguards, or as females.

Learning how to survive within a culture of blatant sexual harassment that is never acknowledged, nor challenged, by the people in power is equivalent to being in a cult and never questioning why, or how, things are done. The pool sucks us in and we know it. We are aware of our failure to escape. Even when one of us manages to run away and not look back, it is usually our friends, those who were left behind to try and manage surviving within this broken system, who somehow manage to reach out and hook us back in. Misery loves company.

The ability to survive within a hostile environment that seeks to destroy your inherent strength and dignity is comparable to learning how to survive in a cult. At least, this is my personal belief. It is part of the reason I believe I was capable of working at the Park District for so many years despite the abuse I suffered. It simply was just the ‘way things are done.’ There was no reason to question, no need to challenge, no reward for resistance.

I escaped the pool. I quit my job and I left everything behind me as I walked out. My swim suit, towel and uniform are still hanging on my hook. Memos are still sitting in my box in the employee breakroom. Food is still in the locker I had been using for the past five years or so. I left everything behind. I did not turn around to look behind me as I ran out the front door and towards a life I am proud to live! A life that will not harm me daily on an emotional, psychological, or physiological level. I ran away from the pool exactly as if it were a cult and my very life depended upon my successful escape.

Liberation is a CHOICE you must Act upon

On November 10, 2018November 11, 2018 By ZephyrIn Diabetic Lifestyle, disability discrimination, gender discrimination, Liberation, racism, sexism, and other isms, sexual harassment, Type 1 Diabetes, UncategorizedLeave a comment

I quit my job Wednesday morning.

I started my shift at 8:30 and waited until my boss showed up to start his shift. He arrived at 9:40 and disappeared upstairs in his office. My rotation for lifeguarding the pool ended at 10:00 (when his Building Supervisor shift began) and I went to the bathroom to pee before heading upstairs to confront my boss and give him my key to the building.

My first words to him were: “I have suffered years of harassment and discrimination ever since you allowed Red to manipulate you into retaliating against me for not having sex with him.”

The last words I said to him before I walked away were: “I will not allow you the opportunity to marginalize me again.”

It was the most rewarding and liberating act I have ever performed since the moment of my birth!

My story is long and it deeply involves the hidden and unspoken forces of sexism, racism, and our seemingly collective inability to take responsibility for our personal perceptions of ‘others’ who happen to be ‘different’.

The trouble began over six years ago when an older male coworker of mine was going through a nasty second divorce. Some of us suspected he was coming to work at least slightly intoxicated because of the smell of alcohol and his glassy, bloodshot eyes. One day, after his shift ended and he was dressed in his regular clothes, he cornered me in the back office while I was still on shift and in my lifeguard uniform. There are two chairs in the small back office and he placed himself so I was unable to get up from my chair and walk away without having to physically push past him. I felt extremely uncomfortable the moment he sat down, but I didn’t say anything because I had become used to the feeling of being uncomfortable within his presence.

I remember feeling offended when I realized I was unable to simply get up and walk away from him if I wanted to. He hadn’t said or done anything to scare me, I simply did not appreciate feeling ‘forced’ to participate in his conversation. He started by telling me how much he appreciated my friendship and how attracted he was to me. At this point, the only thought in my head was “Shit. He’s finally crossed over into ‘creepy old man’ territory.”

***This is a territory most younger women must learn to navigate without a map or directions. I once had a senior male patron at the pool say to me, “You are looking good today, Sam! I can say that because I’m old (wink, wink)!” I stood in my guard uniform, while being paid to spend my time observing our patrons and respond to any medical emergency, and I calmly responded, “Just because you think you can say something, doesn’t mean you should.” These are the types of comments some people would complain about and I would end up being in trouble with my boss.***

Red asked me if I wanted to be “more than friends” with him. My immediate reaction was to feel disgust and disdain for his approach. At the time he was still married and we had enjoyed a three year friendship at work where he would share stories about his kids who are closer to my age than he is. I didn’t want to hurt his feelings anymore than I already knew they were hurting from his current life situation. I tried to be ‘lady-like’ and ‘polite’ and ‘respectful’ and ‘nice’ — just like I had been taught to do since being a little girl while learning how to ‘behave properly’ with my elders.

I thanked Red for his compliment and told him, “No. I do not want to be ‘more than friends.'” I smiled when I said it because that was the ‘right’ thing to do. I did not challenge him on his approach, or his assumption that I would simply be willing to have sex with him (nor his obvious lack of respect for me by not bothering to first ask me out on a ‘date‘). This was not the first time I have had to turn away a man who wanted to have sex with me. This was, however, the only time that the man I turned away did not understand the word “NO“.

**********************************************************************

I have free time now. LOTS of free time. I’m looking forward to spending my free time writing my story, telling my story, sharing my story, and using my story to erradicate the dark Injustice of discrimination with the light of Awareness. The experiences I survived at my old job have given me a personal insight into the deep and abiding grip blind ignorance can have on the best of people. As a direct consequence of the sexual harassment I suffered from my co-worker, Red Liegel, and his subsequent behavior and actions (including two episodes of verbal assault at work), I have also suffered years of sustained and systemic gender and disability (for insulin-dependent diabetes) discrimination from the administration controlling my old workplace.

I even have possession of a copy of an opinion, written by a co-worker currently still employed at my last place of employment, expressing her belief that State-sanctioned slavery, supported by Congress and the 13th Amendment, is a reasonable and possible solution for the problem of illegal immigration within our nation. I found this opinion one day at work while looking for a memo, with the combination to unlock the money for the cashier, that had been taken out of my box. It was in her box, in the employee breakroom, where it could have just as easily been found by one of the high school swim team kids who were coming in to begin their practice. I shared the opinion with the head swim coach, but, despite his horror and disgust, he did nothing about it.

I am writing my story so I can send it out into the world. I want to share it with anyone who can use it to help make the world a better place to live. I will be sharing my story with newspapers, magazines, neighborhood groups, non-profit organizations, my City Council, the local school board, as well as sharing my reprimand to the Board of Directors of my old employer. I am looking forward to spending my free time making a difference in the world I live in.

I make my first vow, right now and right here, to write every day.

Everyday I will post a new part of my story. I will use this commitment as a way to improve my writing, and as a way to remember all of the smaller injustices I suffered that, at the time, were subsumed beneath the overall oppression of my situation. I will share my memories with everyone who is willing to listen.

Please ask me questions. Please feel welcome to participate with me in dialogue. I look forward to engaging with others so we may share ALL our stories and provide the support we ALL deserve!

It is only in silence when we allow ourselves to be harmed.

***The names of the guilty will not be changed. I will not protect them. I will say what happened to me from my perspective. I will share my story.***

one life to Live

On August 12, 2018August 12, 2018 By ZephyrIn diabetes diagnosis, Diabetic Complications, Diabetic Lifestyle, hospital visit, hypoglycemia, Type 1 Diabetes1 Comment

In January, I had the flu. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Not much of a news flash, I realize, but I was unable to stay hydrated and I failed to keep my sugar under 250. The end result was two visits to the Emergency Room in one day with a diagnosis of DKA and Influenza.

I never felt exceptionally sick from the flu. The first night in the intensive care unit was the worst because my nose was clogged and I hate not being able to breathe freely. Worse than blocked air passages, though, is vomiting. At least, for me it is. I HATE nausea. I hate feeling like I’m going to throw up and I hate the act of vomiting. I bring this up only because my story today revolves around the four times in my life when nausea has truly been an issue for me. It is rare for me to have issues with my stomach being unhappy. I am generally an exceptionally healthy individual–except for my broken pancreas. And that is the common thread among ALL four of my most horrendous encounters with nausea.

The first time was in early 2000 while I visited my parents in Bremerton, Washington. We had pizza for dinner and, sometime in the middle of the night, I woke up and started vomiting. And I didn’t stop. Even after the only thing coming up was sickish-green looking bile. By this time I had made it down the hall to wake up my parents, which was awkward only because I was 25 and of the belief I shouldn’t have to wake up my mommy to take care of me. Only I needed her that night. I distinctly remember one moment kneeling over the toilet bowl and my mom lovingly asking me if I wanted any left-over pizza. (I know when you read this, mom, that you will feel guilty–but DON’T!!) This memory still makes me cringe and grin simultaneously.

I spent the next few days not able to get out of bed except to limp into the bathroom to take a hot shower in the hopes of relieving the extreme pain in my lower back. The showers never helped me though, because, as I know now, the pain was in my kidneys and had nothing to do with my muscles. In retrospect, I can look back to this episode and realize it was an attack of acute pancreatitis that should have put me in a hospital bed–if I weren’t such a strong and stubborn individual. The question has now, in the intervening years, become like the question of the chicken or the egg: Could it have been my undiagnosed diabetes causing the pancreatitis, or did the pancreatitis create my diabetes?

The answer doesn’t matter. What does matter is the fact that my next encounter with nausea was in 2008 while I was living in Las Vegas and was diagnosed with insulin-dependent diabetes. I shared that particular horror in a past post and have no desire to embellish again. Suffice it to say that being 25 before my first encounter with nausea, and the fact that it was eight years before the next encounter, goes far in proving my point that nausea and I do not share a close relationship–diabetes links us despite my general imperviousness for nausea.

My third encounter was approximately five years later while I was living in Eugene without health insurance. I was buying my insulin (Regular/NPH) over the counter, along with my syringes and strips. This regime had sustained me through my first year after diagnosis in Vegas and during the first few years of residing in Eugene. At the time, living without a diabetic support team, and having experienced debilitating hypoglycemic events, I felt compelled to maintain my sugar around 200. Eventually, this led to my second experience with, but first diagnosis of, Diabetic Ketoacidosis. The day started with my decision to ride the long way to work so I could stop at McDonald’s and get a couple egg mcmuffins to start the day with. I made it to Mickey D’s, but I had to call in sick to work while in the parking lot because the nausea had become so intense. I went home, started throwing up, and finally called a friend to take me to the hospital.

I was in the hospital for four days. I started on Lantus and Humalog, was enrolled with State-covered health insurance, and started visiting an endocrinologist regularly again. I may have recovered from the severe consequences of high blood sugar, but I was once again a victim of the severe side-effects of insulin. After a couple of years, I finally made the decision to switch to pump therapy in the hopes of relieving the hypoglycemia. My journey of making the transition from syringe to pump is a story I’m saving for another day (but one well worth the telling).

My fourth, and currently final, encounter with nausea was in January of this year. I was sick with the flu and I did what I was supposed to do: stayed home and rested while trying to stay hydrated. But it didn’t work. I kept throwing up after drinking water or Gatorade. I finally decided at three in the morning to call a taxi to take me to the hospital. The waiting room was quiet and the wait wasn’t long. I was eventually sent home by 6:30 with the instructions to stay hydrated. I had gone in telling them that my sugar wouldn’t go below 250 no matter how much insulin I added (and how that worried me because it is ALWAYS terrifying to stack insulin knowing it will most likely ALL kick in at the exact same moment–and THEN start to finally work within a five minute time frame). But the doctor simply said, “you do have some ketones in your blood, but just stay hydrated.”

So I went home and tried to stay hydrated. My stacked insulin never kicked in and my blood sugar stayed high. I finally called a friend at 6pm to take me back to the hospital. This time the waiting room was packed. I sat and waited until almost 9:00 before finally being admitted. I had started vomiting again around 7:45 and spent the last hour of my wait sitting in the corner with a vomit bag slowly filling up while I cried on the phone with my mom wishing someone would come and help me. By midnight I was diagnosed with Influenza (again) with complications of non-coma Diabetic Ketoacidosis (the exact reason why I had been in the exact same hospital twenty hours earlier with the hopes of avoiding).

They needed to put me in intensive care, the only problem being that there wasn’t an available bed anywhere in the valley: Eugene/Springfield, Albany and Salem were full of Influenza patients. I was told at midnight that I would be transported by ambulance to Oregon Health Sciences in Portland. I said OK and went back to sleep. I was awoken at 1:30 and told that my diagnosis had put me on the top of the transport list and I would be flown to Portland. I said OK and signed the paperwork they handed me. By 2:30 I was wrapped to a gurney and transported, in my first ambulance ride, to the Eugene airport and put on a private jet. There was just enough room for my gurney, my two medics, and the pilot. I admit to being disappointed it wasn’t a helicopter, but a private jet ride still ain’t too shabby.

By 5:00 I was tucked away in the medical intensive care unit at OHSU and feeling just fine, now that my sugar had finally been brought back down into range long enough to give nausea-the–unwelcome–house–guest a welcome kick in the arse. I spent a total of three days in the hospital, which was asinine and a direct factor of the complete incompetence of some medical professionals to comprehend diabetes, let alone how to efficiently treat it without the benefit of listening to the person who experiences living with her diabetes EVERY SINGLE DAY (again, another story for another day).

I don’t know if I would experience nausea in my life to the extent that I do if I were to have a functioning pancreas. What I do know is that I appreciate nausea for always being a sincere and accurate indicator of severe problems associated with my dysfunctional pancreas. I despise nausea, but I respect it enough to always listen and pay attention. The parameters of my life were dropped on me without the benefit of options. Sometimes, I am so jealous of the Type 2’s who are able to reverse the effects of diabetes with exercise and lifestyle changes. I wish I could simply make a change in my life that would have the effect of minimizing my experience with diabetes, but all the changes I am forced to make are changes necessary for my ability to survive the process of using the only substance known to keep me alive.

At times it feels incredibly unfair. At other times it feels completely natural. After all, this life is the only Life I have to live.

How Low Can YOU Go?

On July 4, 2018July 4, 2018 By ZephyrIn CGM, Diabetic Lifestyle, hypoglycemic event, Type 1 Diabetes, Type LADA1 Comment

Low blood sugars can be scary. They certainly scare the hell out of me when I’m alone. A few weeks ago, I was walking to the store when I realized I was no longer walking in a straight line. My blood sugars had begun to drop so suddenly that my cgm was unable to keep up and give me a warning. By the time I made it to the street the store was on I could feel my thigh muscles begin to twitch–a sign that a seizure is close at hand. I had one applesauce packet with me in my purse and I swayed on the street corner sucking it down, praying I would make it through the parking lot without collapsing. There weren’t many cars out, but I stood on that corner for a few minutes staring at the one way street I wanted to cross, the one way cross-street with oncoming traffic, and the street lights trying to convince myself that it was safe to step out into the street and not get hit by a car. I was scared that I would be confused and step in front of a moving car by mistake. I had to chuckle, though, at the image of me standing on the corner, swaying like a drunk, and all the people in their cars hoping I wasn’t too drunk to step out in front of them suddenly.

I finally made it into the store and went straight to the bakery section. I knew where I was at the time, but I was unable to recognize my surroundings. Thankfully, I shop at that store often and I was able to subconsciously find my way to accessible carbohydrates. There was one chocolate donut in the bakery case and I reached in and put it in my mouth without pausing. I was into my second bite when I looked up and saw a young woman behind the counter staring at me with a look on her face. She asked if I needed help and I simply shook my head as I went for a third chunk of chocolate donut to stuff in my mouth. I thought about twisting my arm so she could see the med alert tattoo I have on the inside of my right wrist, but, even in the midst of confusion from a bad low, I knew it was useless to try and explain WHY I needed to eat that donut as if my life depended on it.

It has been years since I’ve had a low bad enough to incapacitate me, or cause me to be unable to administer a correction without assistance. Most of the time, I hate sharing these stories because I hate how they make the non-pancreatically challenged people around me react. Either I am bombarded with suggestions on what to do to take care of myself, or with suggestions on how to prevent it from happening again–all of which are useless because they come from people who have never had to count a single carb in their entire life. Friends, family, strangers on the street…it doesn’t matter who it is, I hate being told what I should be doing by people who are not diabetic.

So I joined some online diabetic communities thinking I would be able to connect with people who could easily understand what I am experiencing. Unfortunately, it isn’t that easy, even in the virtual world.

I joined the Latent Autoimmune Diabetes in Adults community on Facebook thinking I had finally found the population of diabetics who would understand me and my particular circumstances; not adults who had grown up fighting diabetes, and not parents of children who are fighting diabetes, but other adults who had to wake up one morning and start living their adult life as a diabetic. I thought the fact that people seemed to post questions and comments meant that I had found a way to connect with people who shared a compatible need for connection and communication. Instead, I found a community of people who seemed to whine as much as type 2’s: When will I have to start taking insulin? How do I prolong my honeymoon? What should I eat to not have to take insulin?

None of these questions concern me or my experience with diabetes. I was completely dependent upon insulin from the first moment I learned I was diabetic. My pancreas and I never had a honeymoon. I never had the option of eating anything that wouldn’t raise my blood sugars. Hundreds of diabetics from across the planet are able to connect with each other and share the experience of trying to avoid taking insulin with their food. I wish I could be one of them, but I never will be.

24-hour graph with peaks and valleys, but all within a decent range

I posted one question to the community in search of other brittle diabetics like myself with a picture of my 24-hour graph showing extreme peaks and valleys in my glucose levels. I had a few people suggest I eat less carbs (without asking, of course, what my normal routine of low-carb cooking was) or suggest that I not eat so many carbs for a correction (not knowing that a 21g granola bar has the ability to send me from a 52 to 257 in less than thirty minutes). Again, I was simply receiving advice from people who are clueless, only this time they also have a malfunctioning pancreas–only their pancreas still works well enough to allow them the hope of thinking they may not need to become dependent upon insulin before the cure is found.

I didn’t get very many responses, and none of them truly helped to make me feel connected, but I did have one very interesting exchange. One woman had posted a picture of her 24-hour graph stating she “wasn’t very happy” with it: a long steady line that had a small bump going up to 175 and coming back down. My peaks had easily reached upwards of 350 and my valleys were down in the 50’s, so when I read her comment I wanted to smack her through the internet and hopefully knock some sense into her. Instead, I tried to be courteous by replying, “Damn! That looks good to me. I’m jealous!” Another women commented a few hours later berating the first woman for being so insensitive as to complain about her graph. I thought, “Finally! A chance to start a conversation!” but, before I could respond, the entire conversation thread was deleted. Great. So, not only am I still not connecting with people who are able to share similar experiences, but now some invisible and disconnected individual is censoring my post and disallowing me the opportunity to engage in a meaningful conversation that, at the very least, has the potential of increasing other people’s awareness and perceptions about diabetes.

I have finally come to accept that there is most likely not another diabetic in the world who can easily comprehend or share in the particularities of my personal brand of diabetes. As much as the memes try to remind me that I am not alone, I nevertheless feel very lonely in a world where my experiences are incomprehensible to everyone else. For example, last night I went out for dinner and drinks with a good friend and I slightly overestimated my carb count for the calamari.

By nine o’clock my cgm started vibrating and beeping while we sat next to the fire in my yard. I was at 42 and felt perfectly fine. I started counting backwards from 100 by three’s and didn’t miss a beat. I told my friend I should maybe count back by four’s since I’m used to testing my coherency with three’s–I still did not have a problem doing the math. I started ranting about how frustrating it is to be so damn low and not feel a single symptom to give me a warning. I went inside and pulled out my stash of emergency carbohydrates: applesauce and dried fruit. I wasn’t the slightest bit hungry since I had eaten a full meal earlier at the restaurant but I drained the applesauce packet while ranting about the need to eat when I’m not hungry, and the fact that I have to waste so much garbage by using single serving pouches to accurately control my carbohydrate intake. This is not how I want to live my life, but what choice do I have if I want to stay alive??

Two hours after the first glucose test, 17g of applesauce, and no basal (I usually keep my temp basal for an hour at a time)

My blood sugar slowly rose up from the applesauce and I never suffered any confusion, loss of balance, or twitching muscles. My friend was scared because my numbers were so damn low, and I could tell I was acting a little erratically, but, overall, it was a hypoglycemic event that wasn’t much of an event at all. Definitely not the kind of hypoglycemic event that would have occurred for other diabetics who were to drop so low. Or, maybe, there are others out there like me; people who suffer alone, and in silence, thinking they are the only diabetic whose diabetes does not operate the way every medical professional who treats diabetes says it should. Maybe, just maybe, I’m not alone either. Maybe I’m not the only brittle diabetic who can accurately count backwards from 100 by three’s or four’s while suffering a severe hypoglycemic event.

The CGM Life

On June 25, 2018June 25, 2018 By ZephyrIn CGM, Diabetic Lifestyle, Type 1 DiabetesLeave a comment

An amazing glucose reading after having a beer with friends

There are many aspects of diabetes too excruciating to wish upon your worst enemy. The finger pricks for a drop of blood large enough to satisfy the insatiable hunger of the glucometer (if you are even lucky enough to bleed when you poke), the invisible disability of hyper and hypoglycemia (we may not show it, but we can damn well feel it), the mandatory diligence required to eat a small snack of fruit (yes, there are carbs in

Small snack to boost glucose levels before riding

food other than junk food), and the unsolicited advice provided by well-meaning individuals who are unaware of how deeply their ignorance dwells (no, the phrase “my Aunt Gertrude had diabetes” is not relevant to a type 1 diabetic’s existence).

For me, one of the worst parts is the unrelenting beep, beep, beeping of the damn continuous glucose monitor during the darkness of night when every sane human in my timezone is peacefully asleep because they have a functioning pancreas. The first few beeps always get ignored. Partly, because a part of me thinks “it will go away” and the other part smartly says, “it will go away.” But it NEVER goes away… it just gets LOUDER. Rolling over and simply turning off the alert is always a possibility, but I’ve learned it WILL NOT GO AWAY if all I do is ignore it. So, I am forced, at 2:23 am, to wake up enough to turn off the alert on my cgm and to enter the damn number into my pump so it can provide me with a correction of insulin to bring me back into range–the way my pancreas is supposed to do on its own without waking me up.

Granted, there are just as many times when my cgm yells at me because I need to quickly consume some carbs and refrain from dancing on Death’s front door in my sleep. I am grateful for the lifesaving protection of my cgm. I feel naked, exposed, vulnerable and fairly helpless when I am not wearing my continuous glucose monitor. To not know the trend of my blood sugar scares me because I have experienced the trauma of being caught unaware by a tempestuous low.

But, I was not always so attached to my cgm. It actually took months before I was willing to wear it continuously. At first, it was because I wanted to continue enjoying an undisturbed night of sleep. Then, there was the frustration that came from having the damn alarm scare the crap out of me with a reading of 43 only to learn I was actually at 65. They may both be scary to most people, but, for me, being in the 60s isn’t much of a concern. I have always had a high tolerance for a low blood sugar. It has saved my life on numerous occasions, so I have learned to not question, but simply to accept with joy.

At first, my insurance company played coy and couldn’t ‘find’ the prior authorization needed to supply me with the sensors required for the continuous glucose meter to work. I spent six months calling and speaking to a new person at the insurance company. I would always ask for the name of the person trying to help me on each call and, every time I called back, none of those people were ever acknowledged to work at the company. At the time, I didn’t use the sensors with regularity because I didn’t have the hundreds of dollars I was being charged each month for a sensor that only works for seven days. I started hoarding my sensors against the day someone would stop sending them to me.

Finally, a day came when I looked in my closet and I saw enough boxes of sensors to make me feel secure. I felt comfortable in knowing I could wear my cgm continuously and not worry about running out of supplies. One other key revelation helped me to feel the sense of security that allowed me to let go of my need to control the amount of sensors I had on hand: I learned how to make a sensor last for longer than seven days!

I wear a sensor for my cgm every day now. Usually, I put them on my thighs, abdomen, or above my butt cheeks, but today I put a new sensor on my arm. It’s not that I’m

Tattoo celebrating my diagnosis… sugar skull with needles as crossbones

embarrassed to wear my sensor in a visible location… I’m too old to be embarrassed. I just don’t put the sensor on my arm because I have tattoos that I don’t want to cover up and that leaves very little space with which to play with. Recently, I have started connecting with other type 1 diabetics on social media and I see how proud they are to wear their cgm sensor in the open. The last time I wore my cgm sensor on my arm was shortly after first getting one, and I couldn’t get it to stay stuck on my stomach (another lesson learned: the importance of Mastisol in prepping a site).

A good streak with a sensor change-simply hit ‘stop sensor,’ wait a few minutes and hit ‘start sensor’

I am no longer afraid of the insurance company denying me access to my supplies. I do not expect this truce will last forever, but I am going to enjoy the peace while I can. I don’t know how long the government will be willing, or able, to provide me with the supplies that are necessary for me to live a life of “freedom” and the “pursuit of happiness,” but I am willing to work part-time at minimum wage as a lifeguard in order to NOT make enough money to be forced to pay for my supplies. THAT, I have learned, is the full truth behind a diabetic lifestyle… sacrifice.

I have not only had to sacrifice my health, life expectations, life expectancy, choices in food and activities, privacy, and social perceptions caused by my disability, but I have been forced to sacrifice my ability to live a life free from the stress caused by fighting with a recalcitrant insurance company. I have willingly had to sacrifice my right to feel secure in my chances of living a safe and healthy life month-to-month.

One would think that with so many sacrifices on my mind I would be willing to do what was necessary to give myself the greatest chance of success at a long and healthy life by doing everything necessary to maintain excellent control over my diabetes. Unfortunately, there are some sacrifices I am not willing to make: the sacrifice of NO beer, of NOT eating out with friends, or of living in FEAR.

I do not know how long I will be able to rely on the State to provide me with the means to stay alive and live my life (…I am aware of how my government is not even concerned with basic Human Rights…), but I choose to continue on my path with the belief that everything will work out in the end. I have my stockade of sensors and my hard-earned knowledge of how to make each sensor last as long as possible (I think 20 days or so is my longest running streak to date). Whatever tomorrow, or next week, or even next year brings, I will be ready to continue losing sleep while wishing my damn cgm would stop beeping at me if I just ignore the damn thing.

Does it Show?

On June 19, 2018June 19, 2018 By ZephyrIn diabetes diagnosis, Diabetic Lifestyle, Type 1 Diabetes, Type 1.5 Diabetes, Type LADA, Uncategorized3 Comments

Wawona Point with Half Dome in the background

This was me (on the left) ten years ago. Before I knew my pancreas was no longer working. I look at myself now and I can see the disease. I can see how thin I was. At the time, I figured I was losing weight because I had been hiking and carrying a large pack all summer. This was the end of the season, and the couple and I had spent three days hiking to Little Yosemite Valley as a base camp for a one day summit of Half Dome. This picture was taken at Wawona Point where we had left the cars parked.

A friend (who has Lyme’s Disease, has restricted her gluten intake, and seen a drastic reduction in her body’s inflammation) said to me yesterday, “I can tell when I look at someone that they have inflammation and are swollen, just like I bet you can see if someone is diabetic.”

I love my friend. But I wanted to slap her for saying, and believing, something so incredibly stupid. Instead, I sighed and chose a response that wasn’t as snarky as my first impulse (“Yeah, right, because we all wear a bright fucking neon D across our foreheads”)– I said, “I can’t tell if someone is diabetic unless I see them pull out a pancreas from their pocket.”

Simple, right? Sometimes it amazes me, and strikes me silent, when people share their

deep ignorance of diabetes. I have personally only met FIVE other people in my life who I know are Type 1, and only two were on a pump. I randomly met the two people on pumps at a coffee shop and a bar here in Eugene during the past two years. They both were incredibly gratifying encounters. I dated a man a few years before I was diagnosed and I knew he was Type 1, but I never saw him take a shot. In fact, I only saw him check his blood once when we were stuck in traffic on a long road trip. I knew he carried his glucometer with him (I didn’t know that was what it was called) because he carried it in an old leather cigar case he had found, and I simply knew he always had that case with him. In the six months I dated him I never learned anything more about his diabetes. It never occurred to me that it meant anything.

I forgive my friend. She has no need to understand diabetes to the depth that I am required to. Her ignorance is my fault for not asking her to become more aware and educated when talking to me about my disease. I’ve done some cursory reading on the internet about her disease, and I ask her questions, but mostly I let her rant when she feels overwhelmed by the loneliness, anger, fear, and anxiety (that I am intimately familiar with from my own experiences) which accompanies a life-altering diagnosis.

I have struggled from the very beginning to control my blood sugar levels. When I first started my diabetic journey, I would hear healthcare professionals call me “uncontrolled.” I hate, HATE, HATE that label. With a passion! I was personally offended every time I heard it because the only thought I had was:

“F*CK YOU! I am doing EVERYTHING I possibly F*CKING can to control this F*CKING disease. How dare you suggest I don’t control my health!?!?!”

I have come to realize that I prefer to be labeled as “brittle” or “labile.” It is important, I think, to realize and consciously accept the labels we choose to live with. The thoughts we think, and the feelings that support those thoughts, are the reality we experience.

I am not perfect. Not even close. I just shared a post on Facebook that stated, “World’s Okayest Diabetic.” Some days I do better than other days,

Usually I try to not go so high, but it obviously happens

but every single day, without fail, I am always intensely aware of the fact that I am diabetic, and it won’t go away, and I have no choice except how I choose to take care of myself. One of the earliest lifestyle changes I made was to not tell myself I “couldn’t” eat something, but to bargain with myself instead. If there are cookies at work and I want one, I simply have to forgo that pizza I thought I would have for dinner. Some nights I will even choose to eat cookies and have pizza for dinner! My mother raised a rebel!!

I do work very hard to keep my numbers as close to 120 as I can. It is a struggle that I wish I could walk away from. It is a way of life that I wish I did not have to live. It is a regimen of restrictions that I resent and sometimes refuse to acknowledge. But the truth is always the same: I am diabetic. I am insulin dependent. I am disabled.

I am in the process of trying to request what I consider to be “reasonable requests for accommodation” at work based upon my disability of having a defunct pancreas. Mostly, I am hoping to emerge from under the oppression of being rumored as a bitch at work because people in other departments don’t know I am diabetic, nor do my bosses understand the extent of which my diabetes can affect my personality when my blood sugars are fluctuating. Like I said earlier, I have always been extremely brittle. My immediate boss simply believed the rumors of what a bitch I was because he knew I was on the pump and that was supposed to “cure” my diabetes. I had no idea he thought I was “cured.”

I live a life that makes me happy. It isn’t the life I thought I would be living when I was thirty. Nor does it resemble anything like the life I thought I would be living when I was twenty. Instead, it is the life I find myself living now that I am forty. I play soccer, drink beer, camp under the stars, eat out with friends, ride a bike everyday, grow my garden, practice my fiddle, and learn new ways of dealing with the depression that hounds me because of the diabetes. Everyday is an opportunity to learn something new about myself. Not everyone has the chance to test their willingness to stay alive and healthy. For most people it is a default. They simply have to wake up and get dressed and make it to work. There are no life and death moments in their daily existence. They know they are alive and that they will remain alive for at least the next twenty-four hours. It is not a struggle for them. I envy those people. But, at the same time, I wouldn’t trade places with them even if it meant having a pancreas that likes me enough to do its job on its own.

New Start to an Old Life

On June 9, 2018June 9, 2018 By ZephyrIn climbing, diabetes diagnosis, Diabetic Lifestyle, Type 1 Diabetes, Type 1.5 Diabetes3 Comments

Eleven years ago, I was working as a mountain guide while living in Yosemite National Park. I led backpacking trips, as well as day trips to the summit of Half Dome, and I spent almost every day off climbing on granite. I also happened to be slowly starving to death because of uncontrolled high blood sugar levels.

Taking a break on Royal Arches in Yosemite Valley

My very first A1C was 16.7% and now (as of April 2018) my A1C is 7.6%.

I was living in Las Vegas during the winter of 2007-2008 waiting for the new guiding season to begin when I was diagnosed. You would think (if you know anything about diabetes) that with an A1C as high as 16.7% that I would have been to the doctor at least once with some kind of complaint or another. But it wasn’t until my mom came to Vegas for a visit, and we went to the Bellagio for a buffet breakfast, that I finally was knocked off my feet enough to convince me to seek medical care.

I had dropped from a size 8 down to a loose-fitting size 4 by the time I was too sick to stay awake for longer than ten minutes at a time. I had simply assumed that my time spent hiking in Yosemite carrying a pack weighing around 50-60 lbs during the previous summer had been enough of a workout to accomplish the significant weight loss. I can

still vividly remember the nights spent in the backcountry feeling as if there was a vast and bottomless void in my stomach. I have never felt so incredibly hungry and un-satiated after eating as I did during those few months. I would dream about food and wake up in the mornings feeling cramped from being so hungry. But, I thought, of course I’m hungry. I’ve hiked at least 8-12 miles everyday and am carrying a backpack heavier than a third grader. It’s not strange for me to be this hungry. I just have to keep eating everything I can get my hands on. Especially yummy white rice and noodles!

My winter days spent climbing and working in Vegas did nothing to help me reclaim the lost weight. My clothes were steadily becoming looser and hanging off of my hips for the first time in my life. I LOVED being thin! I remember one morning waking up at my

boyfriend’s house after he and his roommates had left for work, eating an entire box of donuts, and not feeling the slightest bit sick–just hungry. Thinking back now, I have to wonder: how could I have felt any sicker than I already was, when I wasn’t even aware of how sick I actually was?

The intriguing uniqueness of my particular type of diabetes (Latent Autoimmune Diabetes in Adults) is that it is very slow to progress. When other Type 1 diabetics start to become sick, it is usually a swift and obvious progression of symptoms that sends them to the hospital immediately (it also usually happens in early childhood or adolescence). It wasn’t that I ignored my health. It was simply that because my health was deteriorating so slowly over the years, my symptoms became normalized without my awareness. It was normal for me to not be able to stay awake throughout an entire movie. It was so normal, in fact, that my friends were perfectly aware of the fact

that I would never stay awake, and it was accepted as normal by everyone I spent time with that I would eventually wind up curled on the couch or in a chair and fall asleep, even at a party. It was also normal for me to drink water continuously and not go an hour or so without having to pee.

It wasn’t until after that buffet breakfast (the last buffet I will ever attend) at the Bellagio with my mom, that my symptoms finally became obvious and severe enough to send me to Urgent Care. We had only walked a few blocks from the hotel to go shopping when I began to feel nauseous. I finally had to turn around and go back to my mom’s hotel room to rest and wait for her return. I threw up three times on the short walk back to the hotel. Once I crawled into her bed, I wasn’t able to stay awake long enough to finish watching an entire sitcom episode on the T.V. In fact, we had to turn on the television just so I was able to focus on a show and manage to stay awake for more than ten minutes at a time. We thought it was a vicious virus and we tried to manage my nausea with crackers and orange juice. Nothing stayed down, and I wasn’t staying awake.

The Grand Canyon of the Tuolumne in Yosemite National Park

Finally, my mom made the decision to take me to Urgent Care (which was the first of many mistakes in my experience of being diabetic) and I learned of my condition when the doctor looked at me in disdain and contemptuously said, “you know you’re diabetic, right?”

“I do now,” was the only reply I could painfully manage.

I was immediately misdiagnosed as Type 2 because of my 32 years of age. It never occurred to the Urgent Care doctor to ask about my family history of diabetes (of which there is NONE) and I was never diagnosed as being in Diabetic Ketoacidosis (which I am now fully aware was my prognosis in hindsight, due to the two other times I have been properly diagnosed since). I was simply pumped full of two bags of saline and sent home with an appointment to begin oral treatment in a couple days.

I spent almost a month taking Metformin and some other pill that was supposed to lower my blood sugars. I read the literature explaining how to measure proper serving sizes of carbohydrates. I measured a handful of rice twice a day and ate nothing else but vegetables. Like I said, I was never one to simply ignore my health. Yet, my blood sugars

never went below 300. Finally, the Type 2 doctor I was seeing put me on 40 units of Lantus to be taken before bed. The pharmacist at the Target I went to fulfill my prescription for the insulin, and a box of syringes, asked me if I had ever injected myself before. I looked at him in terror and mutely shook my head. Luckily, he took pity on me and took a syringe out of the box to show me how to do the impossible.

***A quick side note: to give you an idea of how much syringes petrified me, let me tell you a short story. My mom was in the Navy and just before my senior year of high school she was transferred to a small island in the Aleutian chain of Alaska. I was living with my dad at the time, but decided to live with her for the first semester of school so I could experience the great white north. Before we could leave the lower 48, however, I needed a vaccine. I remember sitting in the waiting room in the Navy hospital surrounded by mothers with young children and infants all waiting for their own vaccines. When it was my turn, and I was in the exam room, the doctor told me to relax. I was so stressed at the knowledge that I was about to be poked in the arm with a needle that I unintentionally yelled, “WHY?!?” The doctor sighed and told me I was too tense. So, I replied (loudly) “OKAY!” At seventeen years of age, I was so scared of a small needle that my shouts, from within the exam room with a closed door, had scared every child and baby in the waiting room, and they were ALL crying when I came out five minutes later.***

What happened the very first time I gave myself an injection of insulin now makes me smile with a feeling of carefree acceptance that has only been earned through the experience of eight and a half years of diligently injecting myself with needles at least five times a day…every day. I stood in my kitchen in Las Vegas, bare feet cold on the tile floor, and held the carefully prepared syringe in my right hand. My left hand held a pinch of skin on my belly, and I stood there looking at the syringe in my hand, waiting for the courage to stab myself on purpose. Finally, finally, I was able to jab myself in my stomach with my very first syringe and the shock of the event caused me to let go of everything and stick my hands up into the air. I chuckle every time I think of how that syringe looked sticking out of my stomach, jiggling slightly as I shook with dread from what I had just accomplished.

What I cannot smile, or chuckle about, is the memory of how I wound up that night (and

the next four nights) crawling into the kitchen at three in the morning and sitting on that cold tile floor eating an entire box of cereal with violently shaking hands, and the same devastating hunger that had haunted me on my backpacking trips the previous summer. With the initial prescription for insulin, the Type 2 doctor had also provided me with a referral to see an endocrinologist in six weeks. After the second night of using Lantus I called the endo’s office to ask if they could fit me in sooner because, as I told the receptionist, “something is horribly wrong and I’m scared.”

I was told there was an opening that Thursday and was asked if I wanted it. I have never been so enthusiastic, or relieved, as I was at that exact moment when I answered YES!!

I remember the day of that first endocrinologist appointment being a Thursday because it also happened to be May 21, which was my 33^rd birthday. I learned I would be dependent on insulin every day for the rest of my life and, as much as I hated that fact (and still do), it was also the best present the Universe could ever have given me—because the endocrinologist properly prescribed me to take FOUR units of Lantus in the evening before going to sleep. The greatest birthday gift I have ever received in my life was the opportunity to STAY ALIVE.

End of a long day hiking in Yosemite National Park before being diagnosed

Needless to say, I do NOT like Urgent Care units…or Type 2 doctors.