20 Years, 20 Stories on Diabetes
Twenty years ago, I was in sixth grade and was diagnosed with diabetes. My fame was gaunt, I was excessively dehydrated, and I had no strength for daily life. I live with diabetes in a way that tries to keep myself healthy while minimizing my awareness of this disease without cure. I am fortunate enough to have incredible technology keeping me alive each day, yet every day holds the challenge of “coloring in the lines” well enough to stay that way. Diabetes can wreck pretty much every body system in some way or another, and many who have lived with diabetes for as long as I have, have either passed out when low, entered a coma when too high, or are dealing with the long-term side-effects of a failing body with such things as blindness or amputation of a limb. I have had none of that. However, there is a side of me as a diabetic that isn’t a pretty picture to paint. I have felt for the past year like it is important to share it.
Imagine with me 20 scenarios. Know that all of them are true, and all of them have happened to me, some over and over again.
1. Imagine waking up as a teenager and your parents tell you a story of the night before. You have no recollection that you have done anything but sleep. Unable to recognize your own name, your parents find you throwing frozen waffles across the kitchen floor like frisbees. Your blood sugar is too low for you to know how to function, recognize your name, and find edible food.
2. The love of your life talks to your dad about marriage. Your heart sinks into the couch as the only two conditions you hear to his acceptance are about your health. Your future spouse must, with no exceptions, have a job with good insurance, and he also must be going into the marriage with eyes wide open that you will get sick and you might die prematurely.
3. Imagine your wedding day arrives. As you climb into the car to leave the reception, you are on a high and so excited. Plans for dinner with friends and then off to the wedding night dance in your eyes. When you realize that you aren’t merely emotionally high, your blood sugar is too high. Too high to be read by your meter. It only reads, “HIGH.” Your insulin pump died during wedding from a probable combination of tight hugs, tight dress, and sweat. Your dreamed of wedding night turns into a handful of phone calls to medical companies, pharmacies, and medical friends attempting to keep you from spending your first married night in the ER. Your new pump has to be shipped to your honeymoon location, and you have to use your emergency back up plan to stay in range long enough to get to the new pump. Your first hours of wedded bliss on your honeymoon are spent programming your new pump and hoping you brought all the right supplies.
4. In middle school, you are an over achiever and do all your science fair projects on diabetes. Your excellent projects send you to the state competition, where you realize that you left your supplies at home and your science teacher has to drive you to the hospital on the charter bus to get back up supplies. Your parents are a wreck.
5. Your second anniversary arrives, and you have saved money to afford a fancy bed and breakfast to celebrate. Just as you are ready to settle in for the evening, your blood sugar drops to the lowest it has ever been, and your husband has to leave your side to see if there are any extra snacks in the house, as you used everything you had brought with you, and your body isn’t responding. You are scared that you will die while he is out of the room, but you don’t have the strength to stand up to go with him.
6. In high school, you are an honors student who takes a few art classes to satisfy the future photographer in you. Goodie Two Shoes to the max. You also have a secret enjoyment for lifting weights and skip out on an extra AP class to take weights a second time. The crew in a Weights II class is certainly different than the classmates you have in Calculus II. They like it when your blood sugar goes low because they think you are more fun- you act drunk. You are filled with embarrassment, but it happens a lot.
7. You are at your weekly get together with friends from church to talk about the Bible and pray together. Someone new comes in the door while you are low, and you have a panic attack. You hide in the kitchen, shoving food in your mouth hoping it kicks in before introductions and you greet them while feeling and acting drunk. Crumbs fall out of your mouth and you feel all your classiness crashing to the floor.
8. You are a preteen, hospitalized, and due to your high blood sugar need to urinate often. You are hooked up to so many tubes and wires that you can’t go without help. You can’t hold it any more and wet your gown and your bed. You have no more clean underwear at the hospital and your parents aren’t scheduled to arrive for another few hours.
9. Your appointments to the endocrinologist are always exceptionally stressful rollercoasters. They tell you to work harder or you are working too hard and to lighten up. They tell you that maybe you shouldn’t have so many kids. They like your kids. Your test results are worse. Or better. You think you are doing great but watch them type “uncontrolled” into the computer. You concoct lies with your mom about what you ate for dinner to tell the dietician, because surely you ate that healthy meal sometime…right? Maybe last week?
10. You face the embarrassment of having to store collected urine in the fridge to test if your kidneys (that you probably damaged in gymnastics on the uneven bars) are functioning OK. You have to pee in a “hat” at home and in the hospital.
11. You try to give blood in high school and your friends think you have a blood disease and shouldn’t donate. You make it through the screener, and the workers tell you to stop trying. Your arms are too full of scars from blood draws to get a good draw that doesn’t clot. They have to throw out your bag of blood that was 90% full.
12. You are ready to have a baby, but that means blood sugar work before, during, and after the pregnancy to keep you and baby healthy. It becomes a part time job, requiring an incredible amount of effort. You have to stop eating cereal. You have to keep your blood sugar almost low, right at the point that your body keeps you in a mild anxiety attack for a few weeks until you get used to it. You have 60 appointments in about 8 months. When you aren’t at the doctor, you are recording everything and sending it in via the fax machine you don’t have. Despite your best efforts, your babies grow gigantic and your body never grew much after 5th grade so your body doesn’t like keeping giant babies inside but also can’t get them out. Pregnancy becomes dangerous and you spend many days in the hospital.
13. You are a wedding photographer, photographing people on the day that only happens once. No do overs. Your blood sugar spikes to where you are not supposed to exercise or exert yourself, but you have to weigh the risk of working anyway to finish the reception or tell the couple you can’t photograph the rest of their wedding while you sit down. You otherwise look and sound fine, and are fully capable of working. But poison is building inside until you can rest later.
14. Your blood sugar is high as you show up to a potluck at church. You scan the table, it is covered in carbs. Potatoes, potatoes, bread, potatoes, cookies, cake. You decide that you still need to eat, but by the time you have given insulin and eaten, you are feeling awful. You paste a smile on and act fine but as soon as you hit the passenger seat to head home you collapse. Your stomach hurts, your mouth is dry, you need to pee, you are grouchy, and feel generally unwell. Since you started high and ate “high” foods it takes an extra few hours to recover, so even in the morning you still aren’t hungry for breakfast but need to eat so you can take your medicine.
15. You remember your previously athletic self and think perhaps you should shape up and be that active person again. But every time you exercise you have to eat a snack or three to keep your blood sugar from falling or to correct one that did. It defeats the purpose when you have to eat more than you were able to burn on that walk…It’s a defeating cycle.
16. You cannot go swimming without a low blood sugar which enhances the already anxiety ridden, stressful situation of staying alive in water on whatever the occasion. You wonder how creepy you look to people who don’t understand why you have machines and tubes coming out of multiple places on your body. You cannot go clothes shopping without a low blood sugar which enhances the already anxiety ridden, stressful situation of finding clothes that are suitable for whatever the occasion. And in addition, you have to consider if the clothes have a place to clip or hide your pump, if you can access it if you hide it, is it too heavy and pulls on the waist band, how much does the waistband cover where I put my pump site, can you see my sensor, do I care?, can I sew a pocket in it if I need it?
17. You have a few toddler types at the grocery store, hungry, tired, and at the end of their ropes. You are also hungry, tired, and at the end of yours, but your rope is shorter and unattached to anything. You can tell your blood sugar is falling, and fast. Your body needs food immediately or you will fall down and lose consciousness. You brain is trying to stay awake, but you are scared and you feel lost, even in the same store you are in every week. Even though you are in a store full of food, your cart full of food, your mind is unable to process what to do and all you can think about is the glucose in the car. You already ate what you keep in your purse but you need more.
18. You think you find a good rhythm and have had pretty good blood sugars, then they go haywire. Your doctor reminds you that you are fully out of control, because even a nightmare can throw your blood sugar into a spike overnight.
19. You wake up almost every night a few times with your pump alarming that it can’t find its wifi signal, you are low, you are high, you are almost low, you need to check your blood sugar, you are almost out of insulin. You rarely feel rested except for when you sleep through all the alarms and wake in the morning to find it screaming at all the things you didn’t hear or feel throughout the night.
20. Your pump site needs to rotate, but you have kids who get their toes stuck in the tubing, their hands pull on the sites, the tape gets yanked out, you forget that they can’t see or feel what you can and get cranky when they sit on a sore site for story time. You try somewhere else, but it hurts to sleep or you get stuck on the doorknob. Your kids can’t understand that you drink juice to save your life and you can’t share it with them. You have to keep stashes of candy on hand and they can’t eat it. You have to help your kids practice saying, “My mom has diabetes.”
When I felt like I wanted to write this, I had no idea that the timing of my twenty year anniversary would fall so remarkably close to the time when my story would remarkably change. Most of the stories shown here will rarely happen again as of now, when I start a new pump that will take care of me in a way I cannot take care of myself. These last couple of months I’ve taken time to reflect and anticipate what my future as a diabetic might look like. I am overwhelmed at the possibilities and surprised at the ways I’ve never realized I’ve held myself back.