Tag: insulin-dependence

Happy Thanksgiving!

On By ZephyrIn Diabetic Lifestyle, hospital visit, insulin-dependence, Type 1 DiabetesLeave a comment

Kev finally woke up this morning and was able to say his name. He got the year correct, but guessed that it was July. He’s stable and aware. That is all the blessings I need on this day of Thanksgiving.

I spent the night in his room and watched as he went from not being able to keep his legs or arms up in the air at all, to being able to hold them up to the count of ten. I’ve never been so proud of him!! I was finally able to get some sleep and now I am sitting in the cafeteria waiting for shift change on the ICU to be over so I can get back on the ward. The sun is starting to rise and the clouds and trees are glowing with the sunlight that will grace us for the first hour of today. It is one of those mornings where I feel as if I am standing on God’s front deck looking out at the wonderous creation put forth as our playground.

Speaking of playgrounds, I had to cancel all my holiday plans for the end of this week. And I had it all planned out so well! I was going to have coffee with an old friend before going to a potluck at a new friend’s house. I was going to spend tomorrow morning with my fiddle teacher and her kids playing in the playground by my house before going to a Friend’s Giving dinner with my soccer teammates. Instead, I will be here at the hospital waiting for my parents to arrive when I will then go home, take a shower, and sleep. I didn’t sleep much last night, but I don’t mind at all. I was holding my brother’s hand when he woke up and started gagging on his nose tube. The poor guy. They have to keep his hands restrained until the drain tube is taken out, which may be a few more days if we’re lucky. . . longer if Lady Luck decides to skip town for the holiday. I will hunt that bitch down if she leaves my brother stranded.

The guilt has finally started to creep in. There are so many things I feel horrible about:

  • I let my brother clean up his own vomit before the shit really hit the fan. Why couldn’t I have been a good enough person to wipe up the mess for him?!? Am I doomed to be a miserably selfish person who can’t even help my brother when he pukes?? How callous can I honestly be??!
  • I didn’t ride in the ambulance with Kev and I arrived too late to give them the earliest warning possible about his severe altered mental status. Would it have made a difference? I don’t know. But I think I wouldn’t feel so damn guilty about not being here when he needed me the most. At least I can hope that someone in that room, or in the hallway, listened to my words and will not make the mistake of assuming anything about a person in need of medical care in the future. Why is it so difficult for us as humans to keep an open mind when we encounter strangers?
  • I feel bad I wasn’t nicer to the chaplain. He found me this morning in the cafeteria, but I still don’t want to talk with him. I simply do not want to go through the inane formality of small talk. I have never enjoyed small talk. My brother and I are twins in this regard. As friendly and helpful as the chaplain is, I simply am not in the mood to talk about my job, or where I live, or what books I like to read, or any of the other meaningless shit that people concern themselves with when trying to be ‘nice.’ I don’t effing want nice! I want to spend my mental energy and social efforts engaging about issues that are interesting. I would love to get into a conversation about God and the origin of existence, but not while I’m concerned with only knowing if my brother will be okay or not. I wish I were a nicer person, and I feel guilty about not being a nicer person, but. . . oh, well.

I guess my baptism worked. Guilt is embedded within my soul.  I may not be a practicing Roman Catholic like my family, but damned if I didn’t manage to internalize all the sinful woes of being alive. I don’t pray to God because I do not believe in God. I am not atheist, or agnostic. I simply do not believe in any version of God that man has created because that version is only a timidly pale comparison to the real deal that our puny human minds are incapable of perceiving. I can understand the comfort to be found in having a simple three-letter word to describe something beyond description. I will at times self-identify as Spiritual, but then that starts getting closer to all the New Age mumbo jumbo that I am equally averse to. So, where does that leave me? Either saved from my doom, or doomed from my Salvation, I suppose. Either way, does it even matter?

I have one last guilt clawing at my conscience this glorious morning. I want to go home and do all the things I had planned for today and tomorrow. I have an apple crumb pie from Sweet Life waiting to go to a potluck and be eaten by a bunch of people I was looking forward to spending time with. What am I going to do with a pie and no one to eat it? Honestly, that’s the last of my worries, but it bothers me that my plans changed so suddenly right before they were about to come to fruition (but, let’s be honest, that doesn’t bother me nearly as much as the reason why I’m not following through on my plans). At least I have one silver lining that has allowed me an opportunity to focus on something good that has come out of all this mess.

The reason why I couldn’t ride with Kev in the ambulance, or immediately follow in the taxi, is because I have learned how to take care of my diabetes without thinking too much about it. It has become instinctual. It has become an inherent component of my existence. Without my ability to monitor and take care of my diabetes, I may very well have ended up being a second casualty for the paramedics when they arrived at my front door last night. Or, I may have woken up feeling very sick this morning from high blood sugar and having no way to manage it without leaving my brother to go all the way home.

I was on the phone with the 911 dispatcher when my pump decided to beep at me for having a low reservoir. If I hadn’t taken the time to change my insulin before heading to the hospital to spend the night then I would definitely not be feeling as healthy as I do this morning. I would not have been able to be here to talk with the neurologist who will be performing his angiogram in thirty minutes. If I had chosen to ignore my own health in preference to my brother’s, then both of us would be suffering more than we are at this moment. The other moment last night I am rather proud of myself for was when I was on the phone with my mom before the paramedics showed up and, as I was talking with her, I could feel something was not right. I immediately stopped what I was saying and doing, and told my mom I needed to check my blood. She waited patiently on the phone while I came to the realization that I was at 66! I opened the door for the paramedics while still trying to suck down my juice box and prevent myself from becoming incapacitated as well.

My brother is in for his angiogram. They will hopefully find the bleed and be able to fix it with a catheter, or they may find nothing at all. Worse case scenario is surgery, but keep your fingers crossed, please!! My parents are just south of Portland and will be here with me soon. All my friends are keeping me cheered with texts full of love and support. The ICU staff is amazing and a blessing!! I actually have so much to be grateful for today I can’t help but to think every Thanksgiving from now on will somehow be pale in comparison as well.

There is a piano in the main lobby, but since I can’t play it, I am planning on bringing in my fiddle later and practicing my Christmas music here at the hospital. I will bring some holiday joy to this party!!! Tis the season after all. . .

Life’s Unexpected Absurdities

On By ZephyrIn diabetes, Diabetic Complications, Diabetic Lifestyle, hospital visit, hypoglycemia, hypoglycemic event, insulin-dependence, invisible disability, Pool, Type 1 Diabetes, Type 1.5 Diabetes, Type LADA2 Comments

A few years ago, we had a lap simmer at the pool who wound up floating face down in the water and not moving. It was my responsibility to blow my whistle and alert everyone to the emergency and jump into the water and rescue her. I remember rolling her over onto her back and noticing how grey her face was. We pulled her out of the water and commenced to perform CPR.

I had a bitch of a time trying to open her airway enough to actually accomplish blowing air into her lungs. As my coworkers performed compressions on her chest and attached the AED pads, I struggled to lift her neck high enough and pull her head back to get some air into her lungs. I think at one point I managed to blow air into her stomach, but I am still doubtful to this day that I ever managed to get air into her lungs. We later learned that the emergency doctors at the hospital had diagnosed her as being “morbidly obese” and this was the reason for my inability to effectively administer oxygen.

Fryer was the scheduled Building Supervisor, but he was busy performing his ‘daily hot tub inspection’ in the sauna outside. He never heard my whistle. He had no idea we were in the middle of a medical crisis and needed all hands- on deck. Those of us who were working hard to try and save this woman’s life in a timely manner had to send one of the water exercise instructors outside to fetch Fryer.

Fryer later recalled what his first thoughts were when the woman we sent to get him stood in the doorway of the sauna; he almost said to her, “either get in, or close the door,” but she finally managed to tell him there was an emergency inside. According to Fryer’s recollection, he sighed and made his way into the building he was being paid to supervise. The first thing he saw was every one of his employee’s being paid to work down on the opposite end of the pool performing CPR upon a patron. Fryer finally began helping the team after the AED administered a shock, after 911 had been called, and after the pool deck was cleared of patrons. Essentially, Fryer was able to make his way over and help me try to pry open her airway in the hope of providing her with the optimal chance of survival by providing her system with oxygen. Even with his help the attempt was unsuccessful.

Fryer did participate in a round of compressions, but without wearing personal protective equipment, which can be viewed as superfluous, but anyone with experience providing healthcare in a First Responder’s role knows how much emphasis is put on the need to protect one’s self as paramount in any situation. I felt offended at the time watching Fryer, and another long-time employee, performing compressions without wearing gloves. Particularly after this other employee had pushed me aside in order to perform the compressions. I mentioned his lack of gloves, but he ignored me as all of his concentration was upon the task of performing the compressions.

We were busy wiping liquids and flecks of what were later identified as tapioca pudding from the patron’s mouth as we tried to open it wide enough to accept receiving oxygen. After all the years of feeling anxious being tested by Fryer for my skills of performing CPR, First Aid and rescue techniques, and the way he would hammer home the need to always wear gloves, I felt almost betrayed by noticing what was missing, but being ignored when I tried to point it out to my ‘superiors.’

Our patron lived. The paramedics arrived and took over and eventually escorted her to the hospital. I remember feeling embarrassed watching my boss, who loves to tout the necessity of looking “professional” to all the new lifeguards every summer, standing in his bathing suit and talking to the paramedics. My belief in the merits of professionalism has never been in accordance with Fryer’s application of the concept. A few months later the woman was back and swimming laps in the pool again, this time with a continuous glucose monitor stuck to the back of her arm. But, with all being said and done, we did our job and we did it well. Fryer included. I do, after all, believe he did everything he could to the best of his ability.

My story does not end there, though.

My story continues with the next day finding me coming home after work and curling up in my chair to take a short nap. That short nap turned into a nightmare ending with me being in the emergency room until two in the morning.

My housemate came home a few hours after I sat in the chair to find me incoherent and mumbling. My memory is of having woken up hours later than I expected freezing in my chair and not being able to get up and grab my blanket. I remember my housemate walking in the room and asking me what was wrong. All I could manage was to try and tell him that I was cold and wanted the comforter from my bed (I remember trying to lift my arm to point towards my bedroom and failing). But he couldn’t understand me. He was smart enough to call the paramedics and I sat in my chair watching the blue and red flashing lights stop outside the window. It is the only time in my life (to this point) that I have had to have the paramedics called on me.

One of the paramedics rampaged my kitchen looking for carbohydrates they could feed me to help raise my blood sugar. To this day, I have no idea why he went into the cupboard and found the one hamburger bun someone had left behind from a barbeque the summer before. I cannot understand, for the life of me, why he did not hand me one of the three different kinds of granola bars I keep in the cupboard, or any of the dried fruit sitting next to the granola bars. Instead, the paramedic took the hamburger bun, an egg and a slice of cheese from the fridge, and then took the time to cook me a sandwich!

By this time, I had contacted a friend from work to give me a ride to the ER, and to alert someone I would not be going into work the next day. When she walked in through my kitchen door and saw the paramedic cooking an egg on my stove, she immediately recognized him and asked, “Hey! Want some bacon with that?”

That morning (yes, the morning of this exact same day), my friend had decided to cook some bacon for breakfast in her pajamas. Unfortunately, the smoke from her breakfast caused the smoke alarm to go off. Normally this is not a problem, and it wouldn’t have been this day also, but my friend failed to hear her cell phone ring when the alarm company called to check if the alarm was authentic or not. When the alarm company couldn’t reach my friend, they started calling her list of emergency contacts. The first two contacts didn’t answer for one reason or another. By the time the third person on the list was contacted, the alarm company had also dispatched the fire department.

My friend, having finished cooking the bacon and clearing most of the smoke out of her house, finally heard her phone ring. The third person on her emergency contact list had left work and was rushing to my friend’s home and calling with the desperate hope that it was all somehow a horrible mistake. Luckily the third contact was able to turn around and head back to work, but, as my friend laughed on the phone while standing in her smoky kitchen in her pajamas, she realized the sirens she heard in the distance coming closer were coming for her.

She managed to throw on her robe and meet the first responders at her front door. After she apologized for causing such a fuss by taking the time to cook bacon for breakfast, my friend offered the firemen some of her bacon. She went back inside to her kitchen only to confront both of her cats on the counter eating the last of the bacon.

We sat in my living room laughing about the absurdity of life as we all waited for my blood sugars to rise and stabilize. My friend finally took me to the hospital and stayed with me until the doctor cleared me. A simple hypoglycemic event such as mine (even though anything so serious should not be hallmarked as simple) should not have kept me in the ER for more than a couple of hours, but this trip was accompanied by an irregular heart rhythm that needed to be monitored. All I really remember from the night was having my friend continuously bring me new blankets from the dryer down the hall because I was so incredibly fricking cold!

Diabetes affects me in very unpredictable ways. It is only recently I have even begun to comprehend how strongly stress can affect my ability to manage my disease. The stress of saving a woman’s life the day before was enough to send me into a cascade event culminating in the need for paramedics to intervene. I am becoming better at learning how to manage my diabetes and maintain my health as much as possible, despite the stressful curve balls life enjoys hurling at me. It is a relief to know that a monumental element within my life, which used to contribute to my increased levels of stress, has finally been eradicated. I am quite positive that walking away from the pool has increased my expected lifespan by a couple of years. I am extremely grateful to be in a position where my health and well-being are the driving force behind my days, from the moment I wake up to the moment I close my eyes in exhaustion.

day 5: ***MY diabetes***

On 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.

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

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.