My Diagnosis

As graduation becomes more of a reality, I have started thinking about all the things I have learned in the past four years. The truth is, diabetes has taught me more about myself in 6 months than anything else I have done in college. It taught me that I can handle a lot more than I ever thought I could. It taught me so much about my relationship. It taught me so much about my body. It gave me an appreciation of the millions of people in the world who deal with this and other disabilities, less, equally, and more successfully than I do.

But I have learned so many other things in college.

I moved 4 hours away from home. I had 8 roommates. I drove up the east coast from Florida to Quebec and back. I went to Chicago and Austin, Mexico and the Bahamas. I spent over a month going through England, France, Spain, Monaco, Italy, Austria, Germany, Lichtenstein, Switzerland, The Netherlands, and Belgium. I lived in Paris. I spent 10 days in Israel. I started and ended many relationships. I met the most amazing man who I spend every day with. I had my horizons broadened with everything I learned in the amazing women’s studies classes that I took. I conducted my own research. I dealt with loss.

But nothing has changed my life in the way that diabetes has. Here is that story.

I came back from Paris at the start of August of 2011. Paris was a strange experience for me. There were moments when I loved Paris in every step that I took, and more when I cried until I was sure that it would be impossible to cry any more. Now I know that my A1C in the months that I was there was 12…meaning my average daily blood glucose was somewhere around 300. And any diabetic will tell you that with sugars that high, any emotions you have are magnified or exaggerated…and some emotions that you don’t have any need to have surface as well. But that is just a tiny excuse. I was really homesick while I was there. Being in Paris was really difficult on mine and Nick’s relationship and I had not left with us being on amazing terms.

I came back from Paris and immediately went to Orlando to spend a week with Nick. Things were quickly back to normal. However, while I was in Paris I had lost a lot of weight. About 15 lbs. I attributed this to the fact the “French women are skinny.” I know this is ridiculous. However, I had always been in very good health so I didn’t really have a reason to assume otherwise. I was eating croissants for breakfast and drinking bottles of wine with my fondue every night, but I was loosing tons of weight. And when I returned, I made Nick the fondue and the quiche and the crepes. We ate all of it and I continued to loose weight.

I was also tired all the time. But it was summer, I had just gotten back from Europe, and I didn’t have much better to do so I sort of shrugged that off. Soon after, however, came the true tell-tale signs of diabetes. I would drink gallons and gallons of water. I could never seem to quench my thirst. And I would wake up 5, 6, 7 times in a night to go to the bathroom. It was weird, but I ignored it. I went back to school in Gainesville and immediately started having asthma problems. I have always struggled with allergies, and Gainesville is a particularly bad place for people who have them, so I assumed that being there after having been gone all summer was to blame. I went and saw the school doctor who saw that my lungs were functioning at 86%, which was very concerning. I was immediately placed on Prednisone (a steroid) and that’s when things got really bad. If you are pre-diabetes and start taking steroids its pretty much a catalyst for total pancreas shut down. With in days I was completely incapable of doing my daily activities. I would wake up for class and come home and immediately sleep for the rest of the day with out doing anything else. When I went to visit Nick’s family with him the weekend after I started the Prednisone I made them a chocolate cake. I ate a huge helping and that night woke up shivering as if I was standing in the snow. Nick crawled into bed with me because I was disoriented and uncomfortable, and we woke up some hours later in a puddle of my sweat. I felt like I was on fire. I spent the rest of the day crying in his parent’s den because I would go from freezing to burning so quickly and felt like I was dying. Yet I still waited to go to the hospital.

The following weekend was Nick’s birthday, and mine two days following. Nick’s friend Mike was visiting from Pensacola and we were going to help Nick move into a new apartment and then throw a joint birthday party for the both of us. I went to Whole Foods alone to get a smoothie (sugarcarbssugar) and almost passed out. They had to write an incident report about me. But I still didn’t go to the hospital. I was convinced I had some sort of flu, so I would down like 8 glasses of orange juice to quench my thirst and give myself what I assumed I was lacking in Vitamin C. Finally on Nick’s birthday, Nick, Mike and myself went about moving all his furniture and stuff from one apartment to the other. I will never know why I did not go to the hospital that day because I had like 8 glasses of O.J. and an entire pineapple, plus breakfast pastries and a pumpkin spice latte from Starbucks. And it was probably 100 degrees outside and I was moving furniture. Anyway, we worked form probably 8 a.m. until well after 1 a.m. the following day. After I vacuumed Nick’s old bedroom, I passed out face down on his floor until they finished moving everything else. After which I felt like a lazy and useless jerk for falling asleep on them (little did I know my sugar was probably in the 700s).

On the day between mine and Nick’s birthdays we went for Mexican and I ordered my first ever legal cocktail. After about half a sip I felt like I was surely about to die, so Nick took me to the E.R. After waiting for a few hours, I felt totally normal again so I insisted that we leave as it was about to be my birthday and I wanted to go to home. My birthday was on a Tuesday and Nick had taken off work to spend it with me. He had made all these plans of things we were going to do and we never actually did any of them. When I woke up, I felt awful. We made an appointment at an urgent care center for around 1:30. When we were finally seen at 3:30, I felt fine again. They did a urine test and told me that the sugar content in my urine was extraordinarily high, so they decided to check my sugar. Now I do this probably 10 times a day, but then I couldn’t even look at the blood and was shaking. The meter read “high.” They tested again, “high.” I had no idea what this meant. Nick did, but he didn’t want to tell me. The doctor told me I would have to go to the E.R. and I expected to waste the rest of my birthday there. Magically, despite a full room, once they looked at the report from the urgent care center I was rushed to the back. They checked my sugar, “691.” I was informed that they would have to insert an IV. Before diabetes, when I had blood drawn, I was prescribed Xanex.  I feel bad for this guy who put my IV in because I screamed my head off and tried to kick him the whole time. Nick was very sweet and held me down, but confessed to me afterward, “Not gonna lie, that was one of the scariest things I have ever seen.”

I was taken to a room where an incompetent nurse who left his dirty glove in my hospital bed informed me that I had Type 2 diabetes. Nick was insistent that this was impossible, but it wasn’t until the next day that I got the final diagnosis of Type 1. I was transferred to the I.C.U. and Nick left to get me my toothbrush, phone charger etc. I’ll never forget the look on his face when he returned to the two IVs, EKGs, insulin drip, oxygen tube, blood pressure cuff, and hospital gown wearing individual who lay in the bed in front of him. All he said was “oh babe…” He had the saddest look on his face. All I was thinking was “GET ME OUT OF HERE.” Because he knew I had Type 1 diabetes and I was convinced the steroids were making me have an adverse reaction. I didn’t know much about diabetes then. I knew my great grandmother had it, but I can barely remember seeing her check her sugar. And she was sort of big, and had been diagnosed in her 40’s so like most people who don’t know about diabetes, I thought she had Type 2. Nick knew a lot about diabetes. His ex-girlfriend had Type 1 and wore a pump. To this day he always says that he was in that relationship so that one day he would be better informed to help me after I was diagnosed. But he didn’t tell me in the hospital that night that this was never going to go away. He just stayed until I fell asleep.

The next day my parents drove from West Palm Beach to Orlando to see me. I was told that the likelihood was that I had Type 1. I spoke to a nutritionist who didn’t know what she was talking about. My sugar was checked every 30 min, and I was having tubes and tubes of blood drawn every 4 hours. We were all under the impression that I would never be able to eat any carbs ever again for the rest of my life. I was on bed-rest and pretty much not allowed to do anything. I was informed repeatedly that I would be able to go home almost every day that I was there, but I had a very incompetent doctor and my sugar never dipped below 250 until I left the hospital and was being treated by an actual endocrinologist. The hospital I was at had only one endo on staff and he happened to be on vacation the week that I was admitted. Instead of getting another one, I was seen by an idiotic and horrible man who knew nothing about diabetes. He would visit me in the mornings at around 7 a.m. for less than 5 minutes. Because I was asleep during these times, he determined that I obviously never moved and ordered these things to be hooked up to my legs to regulate my blood pressure. Even the nurses laughed, saying that I was a 21 year old who was simply asleep for lack of anything important to do at 7 a.m. I had an argument with the doctor who tried to tell me that he had informed about his treatment plan for my condition. When I told him it was not the case, he said that he had done it when he had made rounds at 7 a.m. that morning. I told him that what ever he said to me didn’t count if I was asleep when he said it, which he laughed at and then dismissed. I also had a nurse who would never change my commode, and who also made fun of the anxiety I experienced during blood draws. She ignored me when I would page her because I needed to use the restroom. After that I started just disconnecting myself from my machines and  using the bathroom myself even though I was in the ICU and on bed-rest. I made a formal report about all of this and I hope I got her fired because she made me cry and doesn’t deserve to be a nurse.

I was in a state called diabeticketoacidosis, which refers to the heavy build-up of sugar in the blood due to untreated diabetes. According to the Center for Disease Control website, the average hospital stay for this is 3.6 days. I was in the hospital for 8 days and my sugar was never in normal range. They kept me there because they had no endocrinologist to see me, and made however much money by keeping me there until he got back from vacation simply so he could tell me after speaking with me for 30 seconds that I was allowed to go home.

I continually requested to be given a meter to practice with, as well as to be taught how to use the meter and administer my own shots. This request was completely ignored. I was never taught how to manage my diabetes by any medical staff in the hospital, besides being a shown a VHS from probably 1988 about mostly Type 2 diabetes. When I left the hospital I was given a cheap TrueTrack meter, which was not calibrated and no one had told me how to use it. Nick and I sat there reading the instruction manual in frustration until we finally figured it out. It is entirely because of Nick, my friend Janeli, and the internet that I learned how to treat diabetes before I saw an endocrinologist about 4 days after I left the hospital. My hospital bill was over $28,000 of which I had to pay $5,000, even though they originally tried to bill me fore $12,000 for reasons I still don’t understand.

All in all, getting diagnosed with diabetes is a very scary and difficult experience, however because of my treatment at Florida Hospital Winter Park it was more miserable, time-consuming, costly, and difficult than necessary. If you live in Orlando, go somewhere else.

However, it is also proof that with a good support system, and the internet you can take care of your own health and regain authority over your own body. I spent 90% of my time in that hospital researching diabetes, and that is how I got where I am today. It had nothing to do with any nurses, doctors, or nutritionists. And diabetes taught me that I can do anything, because in the hospital I had to.

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