My insulin sits next to the cat food and ketchup packets.
Not where it’s supposed to be, you know, in my body.
Let me start at the beginning.
Sometime in the summer, I started losing weight. It was hard to really gauge, typically wearing sundresses, but my partner and mother convinced me that I lost enough to be noticeable. I didn’t want to lose the fifteen or twenty pounds; I felt like a body-positive-fraud, as if I chose to do this. I was eating all the time, partially to gain those pounds back and partially just because I was honestly always hungry. In August, I started to worry. I had lost so much weight without even trying and I was constantly hungry, thirsty, and always sore. Initially I had written off the excessive thirst and urination as an allergy thing: scratchy or dry throat that I just couldn’t quench. I made an appointment with a doctor for a physical anyway.
It was clear from the beginning that this doctor was not my friend. She was brisk, abrupt, wanting to get to the point, raising her eyebrows in disbelief at anything I said. Doctors already make me anxious and I had a list of symptoms held in my sweaty hands so that I wouldn’t forget anything. I could barely get through them all. The front desk clerk had entered my insurance information in wrong, so midway through my appointment–as the doctor was trying to discourage me from having blood drawn for labs because of the expense–it was revealed that the doctor thought I was “self-pay” and obviously not fit for common courtesy. After double checking that my name was indeed Amanda Owens, she capitulated on ordering blood tests. She then graciously let me know that there was probably no explanation for my weight loss, because sometimes people just lose weight, just like people sometimes inexplicably gain weight.
I came home and cried into Grace’s shoulder, the doctor was so rude and dismissive.
My test results came back in: negative for anything wrong my kidneys, thyroid, liver, sugar levels or anemia problems. She suggested that my cholesterol was a little high, so maybe I should start a low-fat diet. This was Dr. Joanne Kirby’s answer. I was not convinced.
It took me a week or two, but I finally called a different doctor’s office for a second opinion. I had worked myself into a fervor about what mysterious illness I might have contracted, that probably only the likes of House, MD would be able to diagnose. The Advocate Family Practice Clinic on Ravenswood was efficient and friendly and scheduled me as soon as my schedule would allow some free time. I brought in my extensive list of symptoms and the lab results from my latest doctor appointment. Almost immediately, my almost-too-young new doctor asked me if Diabetes had been discussed or if it ran in my family. She looked at my labs and noted that my blood sugar levels were very high at 296, as if I hadn’t had a fasting lab. She was surprised when I said I fasted for the 12 hours prior to blood being drawn. Dr. D ordered a test called an A1C, a lab that looks at the amount of sugar in my blood over the last three months. This, apparently, would be a very accurate test to determine if I had Diabetes or not. My symptoms were so far pointing to Diabetes, Type 1. I was so relieved that the probability of having cancer or some other life-threatening disease was off the table, the news of diabetes barely reached me until the next day.
I was not a patient patient. I was told the A1C results would take 24-48 hours, so I called first thing Monday morning in hopes for an answer. I received a call the next day from Dr. D herself to let me know that my A1C results came back at 18. The number meaning nothing to me; she further explained that it was highly likely that I had Diabetes, Type 1. I asked if this diagnosis would be affected solely by changes in my diet or exercise, but it wasn’t. She said I would probably have to start on insulin, not that it would be my only change, but that she would rather have this discussion in her office face to face, instead of over the phone. Dr. D said that appointment I had made in two weeks would be fine and we would talk more about my options going forward when I came in.
Those two weeks were very stressful. It was hard to focus while thinking about this new, possible diagnosis. I also started experiencing even worse muscle soreness to where it was constant and hurt to even wear a backpack on my shoulders. I was also so very tired. Sometimes, so tired I wanted to cry. The last few months had seen me tired at the end of the day, early bedtimes, sleeping in on weekends more than usual, but I had a busy life with grad school, my internship, work, and the days of just being me. I had stopped most social activities, feeling too sick or tired to participate. But now, the tiredness was like I hadn’t slept in a few days straight.
The big appointment came. I was a nervous wreck. Thankfully, my partner came along at my request. We knew I would be getting a lot of information all at once and we knew it would be important not to miss anything. At first, things weren’t overwhelming. The doctors weren’t sure technically if I had Diabetes Type 1 or Type 2 because I was exhibiting signs from both diagnoses. I was going to start on an oral medication of insulin and then going forward they would adjust to either more oral medications or insulin shots, depending on how my body reacted to the first prescription. The nurse then brought in a personal glucose meter to teach me how to check my glucose (blood sugar) at home. It’s this whole process of an alcohol swatch, pricking my finger, pushing the blood onto a tiny test strip, sticking the test strip into a miniature beeper looking machine and it’s screen flashing another number.
People without diabetes have glucose levels of 60-100 as “normal.” On my first test, the machine flashed “HI.” Anything above 500 was unreadable by the machine. Concerned, the nurse used the office’s glucometer–a much bigger machine with a slightly more painful finger prick. Still, it read “HI.”
Enter Dr. D who, in consultation with her supervisor, determined that it was best for me to go to the Emergency Room. There, the medical professionals would be able to do a more accurate reading on my glucose level. Terrified, but realizing this was all probably a little more dramatic than it needed to be, my partner and I took the train to the ER at Advocate Illinois Masonic. I immediately got an IV of fluids and was taken back into a private room a few hours after being in the waiting room. Once in my own room, we discovered that my glucose reading was at 744. An unbelievable high. Every doctor and nurse who came in the room next needed to hear my story, my symptoms, what brought me in, and how they couldn’t understand why I was even walking or talking and functioning normally. People with highs around 500 or above usually have slurred speech, look pale or sickly, and have trouble walking on their own or staying awake. It was unusual I wasn’t passing out, vomiting, or in a coma, much less that my body didn’t force me to come in much sooner. Furthermore, the fact that I had an A1C of 18 was extraordinarily high–the chart only goes to 12.5 in which 5-7 is a dangerous zone.
The ER is a really stressful, busy environment. Tuesday night was especially busy and I never saw a doctor or nurse a second time. They kept me on the IV of fluids and checked my glucose by pricking my finger every hour, checked my vitals every so often, and occasionally took blood while they waited for a room in the hospital to open up so I could be admitted. Around 7:30, after asking every person who poked me, I finally was able to eat some food because, as the nurse said, I did a “good job” and my blood sugar was lowered to 244.
After arriving at the ER almost six hours before, I was taken into the main hospital around 9pm.
The night progressed with feeling crummy. Since my body had been operating almost fine on such high sugar levels, bringing it down made it freak out a little bit. I’d rotate between feeling semi-okay to nauseous, light-headed, headache-y and overheated. Someone came in my room every thirty minutes to check my vitals or my IV monitors or to take my blood or to prick my finger again every hour on the hour. In my right elbow crook, the IV was pumping me full of fluids and insulin. At some point, a blood test showed that I was extremely low on potassium, so I was prepped with an IV in my left hand for potassium-enriched fluids. Potassium, oddly enough, burns as it flows into your body. Burns so much your eyes fill up with tears involuntarily. I would alternate between a heating and a ice pack to help offset the pain. Around 2AM, I was doing well enough that the-powers-that-be allowed my glucose to be checked every two hours and I got two blessed hours of sleep. The uninterrupted rest didn’t last long.
The next day, I still felt awful. All around awful. I was so weak and thirsty, even being pumped full of fluids and insulin. Someone walked into my room every ten minutes to talk to me. I talked to numerous nurses, care techs, residents and doctors. I met with a diabetes educator, who went out and got more information for me as Grace and I asked questions. I was visited by an endocrinologist. Every person explained the same parts about what was going on with me, about diabetes, and why I was such an interesting patient. Still, they weren’t sure at this point if I had Type 1 or Type 2 Diabetes, though it was more likely it was the former. People with Type 1 Diabetes do not produce insulin, while people with Type 2 produce insulin, but the body resists it. A simple blood test would inform them, but more than one medical professional joked that I might be Type 1.5 if such a thing would exist.
I learned so much in that day. The same information was repeated over and over again, Grace and I surmised to the point that the doctors assumed people would forget and assumed repetition was the only way to effectively teach a patient. Around noon I learned I would have to stay admitted another night, since my glucose had not leveled low enough for them to be okay with sending me home. I was taken off the insulin IV with the promise–or threat?–of starting insulin shots. Oral medication was out the window, I was advanced enough to the point of needing not one, but two insulin medicines. In this way, treatment was the same if I was a Type 1 or Type 2 Diabetic.
Slowly I started to feel better and even got to sleep an almost-uninterrupted six hours over the second night. More and more doctors and residents came to visit me, but I got the news I was waiting for: I would be discharged later that day, to go home on insulin. Since the nurse had given me my insulin shots the night before, it was my turn in the morning. In my head, I had been picturing needles as big as those made for flu shots, but in reality the needle was quite small and I didn’t even feel it puncturing my skin. Checking my glucose on my fingers hurt more than that. With lunch, Grace was able to practice giving me a shot as well. One insulin was “long-acting,” given every 24 hours at bedtime. Another insulin, “short-acting,” was to be given before meals. My diet wasn’t to change…much; more so, just a re-formatting. Counting carbohydrates is necessary for my glucose levels to be maintained. My endocrinologist explained it like this:
“Picture your blood like this hallway. Rooms off of the hallway are cells. Sugar flows through your blood, as it’s supposed to. Insulin acts as a key to open the doors into the cells. When you’re body doesn’t produce insulin, your cells do not receive the sugar they need for energy.”
For months, I had been flushing my body of the nutrients, calories, and sugars that my body needed to function properly. To keep my glucose under tight control, I must calculate the amount of carbs I will eat each meal to be off set with a specific amount if insulin that I give myself before eating. No more binge snacking or eating sweets willynilly. I have to be on top of everything I put into my body. It doesn’t sound like a bad thing, per se, just different.
It’s not an exact science, as every body is different. Even counting the carbs with each meal, monitoring my glucose and injecting my insulin shots on time, and logging everything very carefully, things can get out of whack. Barely able to see (high sugar levels can affect eyesight), the Saturday morning after being discharged, I called my doctor with levels above 400. She apologized profusely, but said I needed my partner to take me to the ER… again. After only being home a day and a half, I had to go back. Four hours, two bags of IV fluids, and a correction shot of insulin later, I was sent home to up my own insulin shots by two tiny liquid milligrams hoping that I wouldn’t wake up with the same symptoms the next day.
Advocating for your health is no picnic–I realize I would be feeling much more lost without the great supports that my partner and father have been. Both have learned the intricacies of what diabetes means, how it works, and how to support me in very different, beautiful ways, from staying awake with me throughout the nightmare of being hospitalized to counting carbs with me to researching better technology.
Furthermore, I’m privileged to be going through this process with a team of medical care professionals that treat me like a human being: they respect my partner, remember our names, and respond quickly to my requests for more information. I am lucky to have a boss, friends, internship supervisor, and grad school professors that understand what I am going through and gave me allowances and genuine support through the nightmare of being hospitalized.
Even more than that, I am privileged to have health insurance. Without it, I would be financially overwhelmed and possibly, untreated. Visiting an emergency room and being admitted into a hospital for more than one day is unbelievably expensive… in addition to necessary monthly costs for insulin, needles, and glucometer supplies.
So, for now, my insulin sits in two little bottles in the refrigerator, in the butter compartment, next to wet cat food and ketchup packets. A kitchen drawer is full of syringes and alcohol swabs and all the components that go into checking my glucose. I have bruises on both hands and elbows from IV’s and needles. I have a whole new team of doctors and a go-bag packed in the front closet in case I am admitted overnight again into the hospital. I am scared, worried, concerned, but resolved and ready to move forward. I am counting carbs and milligrams of insulin. This doesn’t have to affect my life negatively, only impacts my decisions and routines. As one resident put it, “some people wake up and put contacts in. Some people have to give themselves a shot or two.”
If I’m patient and persistent, cautious and aware, I’ll start to feel better. While I lost touch with many people, activities, and even the time to write when I was struggling to stay awake and healthy, I am back on the right path. Barely a week after being discharged from the hospital, I already reached my blood glucose target range with close monitoring and obsessive carb-counting. Now, a month later, I understand it even more.
Right in time for the family- and food-filled holidays.