Living with Diabetes
 |
| About a month apart |
About a month before my ninth birthday, I got seriously sick. I stopped eating, and lost a lot of weight, as a family we visited a family member that hadn’t seen me in a couple of weeks, and they were shocked at how much weight I had lost. Being nine years old, and weighing less than 40 pounds was making my parents concerned of what was wrong. My mom tells me of a time, that we were going to see my grandmother that lived 25 minutes away we had to stop along the way so that I could go to the bathroom. My mom took me to the Doctor, my actual physician was on vacation, we then talked to his partner, so I have thought of him as Doctor A, and he said that my sickness was just the flu that was going around. It being October, that seemed logical. We went home, Mom gave me fluids, and I drank a lot of warm Jello at the time. Still nothing stayed in my stomach, I got sicker and sicker. We went back to the my actual doctor, who was back from vacation at this point. I will call him Doctor B I don’t remember this visit at all. I do remember getting back into the car (the back seat, laying down flat and as small as I could get) I wanted to crawl into a hole, because I was in pain, I was sick (the word sick doesn’t seem to do it justice to me at the time it was beyond sick.)
Mom drove me to the hospital using Doctor B’s advice, because of being tender to the touch, I was in some serious pain (where Doctor B had touched my stomach and I groaned) me being sick, and plus the fever I had, his prognosis was appendicitis. I have been told that he called in a surgeon. At the hospital in 1982 the first thing they did was take blood samples, and put an IV into me. The IV had glucose, and saline. The surgeon came into my room to prep me for surgery asking me questions. I remember him asking me my name, and asking me if I could show him where the pain was. It was too high up on my body for the appendix to be rupturing. To a nine year old, how I interpreted it was, we still don’t know what is wrong with you, but it aint what you came here for. So I thought. “SERIOUSLY, are you kidding me, I am so sick, ready to crawl into a hole, and you don’t know what is wrong. GO! get outta here, get Smarter, because to me you are all stupid.” Then I was out, I don’t remember anything for around 18 hours. I was later told that I was in a coma, and that I was diagnosed diabetic. The surgeon switched the glucose solution of my IV, to just normal saline. He then waited for the blood work to come back, it was above 900, I think at the time that was as high as the sensors could read the blood work. Remember when I mentioned they took the blood sample, and they then put in an IV of glucose and saline into my veins at the same time. In comparison to a non diabetic, 900 blood sugar is extremely high; a non diabetic will be around 100. My younger sister will test her blood often. If she feels sick, she tests and is at a 115 Level. I think if a non diabetic were to test above 150 that they would be feeling nauseous, and sick. So my blood sugar being above 900 with a saline/glucose solution in my IV was serious. Since I was unconscious at the time, when my mom was being educated on what Diabetes was, I didn’t really understand what was wrong with me or know what was going on. When I woke up the only thing I knew was how happy my mom was. She later told me that she was just happy it wasn’t cancer, that diabetes we could handle as a team.
That team consisted of everyone around me, my doctor, my dietitian, my mom, my dad, my grandmother, my best friend, the next door neighbor, my brothers and sisters. And the team kept growing, until even teachers would end up on it. I thought of my mom and dad as the coaches of this team, mainly because they were the ones that organized the team, got us all together, and were the trainers.
To me when I was 8 years old, actually 8 years and 352 days old. I was in the hospital for a week starting October 26th. I was in the there for Halloween, ironic, in the hospital for diabetes on Halloween. It was painful to a child who LOVED chocolate, loved to eat, suck on, devour chocolate. To be told I couldn’t have sugar. It was devastating. Then to be in a public building with bubbly people in costumes, coming in and out, offering everyone but me candy for Halloween, giving everyone but you a treat. It was heartbreaking, and my teammates had to watch their little girl feeling unfixable, devastated, and heartbroken all at once. My teammate (my dad) in this horrible disease, he searched drug stores, grocery stores for anything sugar free. In 1982 there wasn’t a lot of sugar substitutes like NutraSweet. He went and found candy, cookies, gum, anything sugar free. He ended up with sugar free hard candies in his jacket pockets just so he could give me something every time he saw me till the day he died. My grandmother started making sugar free jams and jellies. She had a full shelf just for me. I had a full support system, which I believe is vitally needed to survive being diabetic.
Being in the hospital is an interesting experience. Once the doctors got my blood sugars mostly regulated, I was in the hospital for a couple of more days. I didn’t really get into the soap operas, that the TV would show in the day I would wander the halls. I would read, or play on my hospital bed, going up, down, bring my head up, bring my feet up and so forth. As I was sitting in my room one day, I heard a couple of nurses in the hallway talking about me. One said, “that kid in there is 9 and is diabetic? That sucks, she won’t live past 25” I am thinking. REALLY!!!! Then I took it as a challenge, WE (my team) will see about that. I will show them. And now writing this I am 37 years old, and not dead yet. It took 26 years of being diabetic before my eye doctor saw any problems connected with diabetes. The Doctors challenged my team also with the generalization that most diabetics spend an average of one week a year in the hospital connected to their diabetes. Again, REALLY!!!! I spent one day in the past 28 years in the hospital connected to my diabetes, and that is because I got really sick with a bad case of flu, not because of me being out of control with my diabetes. I give credit to for my in such good health, to my team, and to me testing often, and knowing my body.
So here I am 8, almost nine, in the hospital having a horrible time, being told that my life is going to change dramatically, that I can’t walk around barefoot, because the feet on a diabetic are the first to lose circulation (DO I even know what circulation is?) and that my eyes are going to go bad, and that I will need to make sure that I do not let my blood sugars go bad because I will go blind and lose my feet. Again, a 9 year old mind thinking, “What am I supposed to do? Put my blood sugar in time out or spank it if it gets bad? Really how am I supposed to stop it from going bad?” The doctors and nurses are telling me about this thing called Insulin (ok that was English right?)
So to keep my blood sugars from going bad, I needed to take this insulin stuff, and how does it get into my body? SHOTS! Are you kidding me?!?! SHOTS. I have to take SHOTS… I am 9 years old (because at that point, I was feeling that those 13 remaining days were gone, I was already 9 in my head) and I have to take SHOTS for the rest of my life… not just for a while, or a couple of times a month or year. No, EVERY day, at least one shot… at that age “shot” is a 4 letter word.
So once I process this shot crap. I have to deal with the “low’s and high’s.” The way it was explained to me sucked. A low blood sugar is when the body has too much insulin for the sugar intake. A high blood sugar is when the body has too little insulin for the amount of sugar intake. So let me try to explain it better, and you may think nope, the way you explained this sucks too. But still it is the way I understand the “low’s and high’s” as an adult in the here and now.
A low is too much exercise, too little food or too much insulin or a combination of any or all of these. A high blood sugar is just the opposite; too little exercise, too much food, or too little insulin or a combination of any of or all of these. But how does the “Low” or “High” blood sugar feel?
I think everyone feels a little bit different, mainly because we all have different personalities and different reactions to our own bodies. When my own personal blood sugar gets low, whatever I am feeling is enhanced. If I am emotionally hurt, and my blood goes low… I get upset and so forth. When normally that I would blow off something that is said to me, with the low blood I overreact to it. As an example, if someone is teasing me and my blood sugar is low, I react in a completely different way than I would without my blood sugar being low, usually in a negative way. My body gets “shaky” that is how I have described it when I would feel low, and I need something to eat to bring the blood sugar back up. Shaky= like how you feel after running a really hard mile, about 10 minutes after, you are shaky and need some Gatorade or juice, that would be a low blood sugar. I am trying to explain this as if you are a non diabetic, if you are a diabetic, then you already should know what a low blood sugar feels like to you.
When my blood sugar is “high” I feel, in a word, “Blah.” But let me explain Blah to you, I don’t want to move, I have no motivation to do anything especially get out of bed. I feel achy, I am nauseous. I just don’t want to do anything. I also get into what I have termed the peeing and drinking mode. I end up with dry, yucky cotton mouth, and liquid, usually water, is the best thing to get rid of the cotton. Since I have drunk all of that water, it usually goes straight through me, and I need to use the bathroom. The higher the blood sugar the more Blah I feel. I don’t get many high blood sugars, because I don’t like to feel Blah. But on the odd chance I get a bad batch of insulin (it has happened once) or my pump is kinked, or that chocolate ice cream with chocolate syrup was just too tempting, the chances of my blood sugar going “high” is likely, just because it is a way of life for diabetics.
I think how I react to the highs and lows of life, is how I mature and grow into a stable person. Who can handle the situations that life throws at me. The range of highs for me is above 180 on my glucose meter, a low to me is below 75 on my meter. I have tested my blood sugar higher and lower than that. And the personal range I try to stay within is 80-130.
At the time that I was a kid and newly diagnosed, at least the first year of diabetes. I felt out of control of everything. What I ate, when I ate, that I had to give shots, that I was told to test my blood sugar often, and that I had to wear the right shoes, that I had to wear shoes! I had no control of a lot of my life at this point, it was really frustrating and I got moody. Especially after someone, usually a teammate, told me to do something eat faster, test, get up, and sit down. I would fight back.
When I got out of the hospital and into the mainstream of life; school, church, friends and family there was an adjustment period, of getting used to being diabetic and being me again. There are times even after 28 years of being diabetic when I think I am still in that adjustment period. My saint of a mother has helped me through a lot of that adjustment. I have 2 brothers and 2 sisters. So my family life also needed adjustments. I needed the support of the team, and this meant less sugar for the whole family, testing urine (test tubes and color changes) then testing sticks (strips) with urine, and then modern technology brought into my life testing blood sugars with blood testing meters. Yes, it took two full minutes then wash off the strip, then another full minute to get the reading from the machine. But that was still a ton better than the urine testing. The urine testing was at least two hours behind my current blood sugar, and I couldn’t test the first thing in the morning, because that urine was old and built up from the night. So I had to pee, and then get more out to test… 5 minutes later. Try that every morning! But now there are days I can pee on command (something to be proud of!)
School adjustment: my experiences of going to my elementary school, I think probably weren’t any different than anyone else’s. But to me, it was entirely different I had a speech impediment (so I had an actual non Utahan accent, although I was born and raised in Utah), I had a boisterous laugh, and now I show up with this disease! GIVE ME a BREAK! The kids in my school teased me mercilessly.
I had classmates come to me, and tell me… “you are going to die because my grandpa, or uncle, or aunt or some cousin of someone’s next door neighbor, (Fill in the blank______) died of Diabetes” (I ended up with a list almost every day of stories about people that had died. )
I would go home upset often, and my saint of a mother… wonderful woman, would be my teammate again and help me through it. There was one time when I had been diabetic only a couple of months and I was sharing a soda with a friend, and another kid in our class came to my friend and said, “you don’t want to drink out of that can. She is diseased!” I was so upset after that day that I went home complained to my teammate again, and she decided, “Fine we will educate them then.” The next week in Show and Tell, we had “what is Diabetes.” We brought the straight sugar cubes (they reminded me of chalk so I that is what I called it) glucose tablets, and the mint sugar gel (camel snot) to give as samples for my classmates to eat. My mom had extra syringes and the urine test strips. My mom brought in oranges that whoever wanted to could give shots to the orange could. I still had problems with my classmates throughout the years, but nothing like those first couple of months.
I remember my dad telling me one time, of him praying to god, that to make him be diabetic instead of me. There was one time that my family went to a reunion for my dad to which we were fed dinner, and then for dessert they had these brownies that were really delicious looking. I really, no… REALLY wanted one. I got upset, ran out into the lobby area laid down on the couch, and just cried. My dad found me there, picked me up, and while hugging me told me that he wished he could take this disease from me. He sat there and held me, trying to let me know that he would fight any demon he could. But he couldn’t fight this demon; he let me know how upsetting it was to him, that he couldn’t fight this demon for me. He later was diagnosed with diabetes himself. He had the onset type, or type II that came with older age, overweight people. I needed the support of my team, and him being one of my captains, made him become my champion.
Once, shortly after I was diagnosed, when I was visiting with a friend, at nine years old, we were playing games, or little house on the prairie, or just hanging. She had a piece of cake, with white fluffy frosting and a big yellow frosting flower on top; she brought in that piece of cake into the playing area, and it looked really good. I really liked cake, when I could eat it, this wasn’t chocolate, but it was cake. She left for a little bit to go to the bathroom, get a glass of milk, or something, and she left me alone with that piece of cake. Of course I took a nip… just a small nip not even a noticeable nip of that beautiful frosting, it was barely a taste. But oh it was a wonderful taste. It had been drilled into me at the hospital that I could never, NEVER have any sugar. Outside of the Chalk and Camel Snot, sugar was forbidden, and if I did eat anything with sugar I would go blind. At that point it was worth it. That taste, that nip of frosting, was so worth it. Since it had been drilled into me during my hospital stay that I couldn’t have any sugar, I tried to create my own penance, which to me was to skip dinner that night. I was nine, it was before I knew that a miniscule piece of frosting does not equal a dinners worth of sugar. So I made myself skip dinner.
With that poor decision making, my blood sugar went low. My parents came home from going out to dinner, I was sitting in front of the television and I didn’t respond to them. Which could have been just me being a pre-teen, but my mom realized that there was something wrong. She asked me what was wrong, I told her nothing, (I wasn’t about it admit that I was going to go blind because I ate sugar!) that discussion went back and forth for a few minutes. Finally she got it out of me that I skipped dinner. I didn’t tell her why I skipped, I think until recently she blamed my older siblings, who were supposed to be taking care of me and making me dinner. She saved me again, my teammate. She made me eat dinner to bring my low blood sugar up. I only felt guilty for a couple of years about her blaming my siblings for me not eating.
I noticed that being diabetic, we eat. We EAT a lot! An average of 6 meals a day, when I started out, I would eat breakfast at 7:30, go to school with a piece of homemade bread or an orange or apple to eat at 10:15-10:45, eat lunch at 12:00-1:00. Then go home from school, eat another snack at 3:00. Dinner would be around 6:00 with another snack at 8:00 or 9:00 then bed. But that was a lot of eating. I didn’t feel like I had a choice, it was part of this Disease. So at times, I wouldn’t eat, or I would just push my food around on my plate, there were a times that I took my sweet time eating, mainly because that way I was at least in control of how I ate, because it felt like I had just eaten.
My mom had talked to my teachers at the beginning of the each school year letting them all know that I am diabetic, and that there will be times that I will need to leave class to eat something or drink some juice and also since I became diabetic I have problems holding my bladder, because of the peeing and drinking mode as explained earlier.
When I was in 3rd Grade, about a year after I was diagnosed, I must have trained my body to need to use the bathroom every day at 10:20. Luckily for me, recess was at 10:15. So I could take my time, maybe eat my 10:15 snack, maybe not eat my snack, go to the bathroom and still have fun for the rest of recess. During the hunting season, Utah got a ½ day on one of the Fridays; we were able to go home at 11:30 or 12:00. So our morning recess, didn’t happen, although my teacher, who was a substitute because my actual teacher was on bed rest for pregnancy. She did excuse us row by row to go to the bathroom. I really needed to go by 10:30 and walked up to her on my tippy toes trying to hold things in and asked her if I could go to the bathroom. She said I could wait till my row’s time to go. By the time my row came up it was 10:45, and I couldn’t even stand to head to the restroom. I peed my pants right there sitting in my chair. I got really upset and ran to the bathroom, with my wet pants.
The substitute teacher (who was a really nice woman, and I still feel bad for the way I treated her) called my mom and found out what to do. Mom told her to find out what my blood sugar felt like. When asked at the time, with a bathroom stall door in between me and my teacher, I didn’t feel like telling her, so I didn’t. I was low at the time, and if you remember a low blood sugar for me, enhances what I am feeling. I started out embarrassed, hurt and upset; now enhance that with a low blood sugar! I was pissed. I was not about to talk to my teacher, whom I blamed all of this on. My teacher got from my mom that if I am low, to get me some sugar, I should have some in my desk. Now I didn’t eat all of those snacks that I was taking to school every day for the 10:15 snack, so there was some left sitting in my desk.
She brought every moldy piece of bread, and all the rotten apples and oranges, into the bathroom with us and tried to get me to open the stall door. She ended up shoving the yucky food on top of paper towels under the door towards me. I finally opened the door, and my teacher seemed as upset as I was. I like to think it was because she was worried about me. She may have been concerned for her own job, but I think it was because she was concerned about what she could do to help me. She became a member of the team at that point. That is where my mom found us, on the floor of the bathroom, looking at moldy bread and rotten fruit.
Another experience I had with teachers and school was in 4th Grade. My actual teacher at the time was a good friend of the family. My mom had talked to him, and he knew of my situation. We switched classrooms. My teacher taught math, and the other 4th grade teacher taught science. For the last hour of the day, I would walk down to the other 4th grade class and learn science. One day, I was in science class and my blood sugar got low. The “real” teacher had left during class leaving a student teacher from the local University teaching us. I went to the student teacher and asked her if I could go get some juice because my blood sugar was low (it worked in the past with previous teachers.) She looked at me, and said “I have heard that one before you can wait till after class.” These teachers did not make it onto my team. I walked back to my desk and waited the rest of class. I then tried to make it to the faculty room (where the fridge that had my juice was located) I made it to the hallway in front of the door, but was so fuzzy and out of it, I didn’t get the door open. I passed out right there, almost hitting a kid from a lower class, because school was out for the day and the hallways were crowded. One of the 5th grade teachers saw me pass out and he tried taking care of me. He put something in my mouth so that I wouldn’t swallow my tongue, and made sure my feet were elevated. He didn’t realize that it was diabetes that had caused me to pass out. If I had been wearing my necklace that shows my medical problem he may have known it was diabetes, and not epilepsy. I believe now that a bracelet or necklace with a medical symbol on it is crucial to telling people that are trying to take care of you, when there are problems, what the problem may be. Luckily the schools secretary’s husband was diabetic, and she was able to help by getting some sugar in my mouth. When my mom was called she did not have the car and she had to run over to the school. She showed up breathing heavy, the adults that were all working on me, thought that she was panicking because I had passed out. She wasn’t panicked, just in a hurry. They basically left me there lying on the floor of the hallway. I was barely starting to become conscious but they took care of my mom I find that ironic that I was the one passed out, but she was the one they were concerned about.
For years after I was diagnosed with diabetes I went to diabetic camp, it was Camp UTADA. It was an outstanding experience. I had friends, counselors, doctors that all knew how I was feeling. I will push any diabetic to go to camp at least once; just for the knowledge that they are not the only ones in the universe with this disease. I ended up volunteering for staff at the camp, from the time I was 15 until I was 28. I would go 6 weeks out of the summer, just so I could be at camp. I would even pack for camp two weeks early. I wanted to give back to camp, the equivalent of what it gave me. Camp gave me a sense of normalcy. I loved camp. Diabetes is with me 24/7 for the rest of my life. I will never be free of it. I understand this from the support of my team and from camp.
