I realize there are quite a few spelling and grammar mistakes in my story but with a baby in my arms and a three year old crawling all over me… I’m not going to take the time to fix it. 🙂
This week marks 10 years since I was diagnosed with type 1 diabetes. It’s been a decade of both struggling and thriving without a functioning pancreas.
This is my diagnosis story, sharing the time in my life when life became pre diabetes and post diabetes.
The bagpipes played a cheery tuned as men in kilts marched in time to the steady drum. Children ran behind the fire truck eagerly grabbing up candy as it hit the pavement. It was St.Patricks day 2006. I sat down on the side walk, feeling weak and drained. I had a headache. I held an empty gatorade bottle up and licked the rim trying to get one more drop out of it. My throat was so parched. Water. All I could think about was water…. “Will you walk with me to the porta potty again?” I asked Allie. “We just got back!” she laughed. “I know,” I said embarrassed, “they’re so nasty but I have to keep peeing!” We jogged down the road weaving in between people lined up and down the road dressed in green. During the course of the parade I had to keep going back to those nasty port potty’s an alarming amount of times!
We were sitting in the back seat, my dad driving and Allie, her sister and I in back. Allie a type 1 diabetic since she was 8, pulled out her blood sugar meter and dutifully pricked her finger. I watched as the little strip sucked up the blood and a number registered on the screen. “Maybe you should check my blood sugar,” I said with a laugh to make it sound like I was joking but I was actually a little bit concerned. “I will” she said. “Rememeber I checked Hannah’s blood sugar that time and we found out she had diabetes.” I looked at the thingy with the needle in it. I didn’t know a clean needle could be put in it and I knew dirty needles were not safe. “Oh it’s okay..I was just joking” I said.
I was laying on my bed to sick to move. An empty plastic galloon water jug was beside me. My stomach ached from the effort of trying to fit so much water in my stomach but I could not stop drinking. I was so thirsty. Unknowingly I was in the later stages of diabetic ketoacidosis. As defined by Mayo Clinic diabetic ketoacidosis is, “a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. Diabetic ketoacidosis develops when the body is unable to produce enough insulin. Insulin normally plays a key role in helping sugar (glucose)- a major source of energy for your muscles and other tissues- enter your cells. Without enough insulin, your body begins to break down fat as an alternative fuel. This process produces a buildup of toxic acids in the blood stream called ketones, eventually leading to diabetic ketoacidosis if untreated.” Ketoacidosis if left untreated will quickly lead to diabetic coma or death.
I had begun to throw up as my body began to reject food, unable to digest it. I thought I had the flu. I lay on the bed reading Uncle Tom’s Cabin. I was at the part where the beautiful, golden curled, gentle spirited little girl died in her bed. I put the book down to make one of my many trips to the bathroom. I momentarily went blind and my head spun as I walked across the hallway to the toilet. I was panting from the effort. I closed the door and saw myself in the full length mirror on the back of the door. I think feeling emotional about the girls death in the book put me in a place mentally where for the first time I could admit to myself that something was very wrong. I lifted up my shirt in the mirror and looked at my ribs sharply protruding from under my skin. I touched my stomach. I looked like I had a 6 pack because my skin was stretched tightly over my muscles with no fat in-between. My skin was dry and flacky. My lips were cracked and bleeding. I sat crossed legged on the bathroom floor too weak to stand up. “God!” I prayed silently, “I’m dying like the little girl in the book. What is wrong with me?..”
My mom was taking my brother to karate class. I asked her to drop me off at the health food store and pick me up on her way back. I scanned the shelfs looking at bottles of herbs and vitamins. I was searching for something to give me energy, to make me gain weight, to make me well again. I was searching for something but I didn’t know what. Thirsty, I picked up a bottle of juice with green spirulina floating around in it. I choose a seat next to the bathroom. I sat down exhausted and tried to catch my breath as the room spun faster and faster around me.
We were going to target. I remember that because that was a place we didn’t often go. It was a short drive. I had to have my mom stop on the way there so I could run into a gas station and pee. We pulled into the parking lot and I ran into the store just making it to the bathroom. I then walked to the other side of the store where my family was. I walked to where they were when I had to pee. I started a fast walk to the bathroom, then a jog, I just about made it to the door of the ladies room when my body took over and I peed my pants trying to make it to the toilet. My body didn’t care that I was almost 14 and too old too wet my pants. I was dying and my kidneys were trying with all their might to purge the excessive sugar built up in my blood stream through urinating.
As I cried and had to go find my mom to tell her I peed myself and had to leave, in that moment she realized for sure I had diabetes. Her best friend at the time ironically had type 1 diabetes and she had been googling symptoms unsure of what was wrong with me. Back at the house my mom called my pediatrician and listed my symptoms. It was 5 in the evening and the doctor’s office was closing but the doctor was concerned enough that she said to bring me in and her and her staff would stay there until they saw me.
I sat on top the crinkle paper on the examination table. I had peed in a cup that was going to be tested for sugar and for a UTI and now I was waiting. The doctor came in and her professional smile turned to a look of fear. She had my mom go out of the room. “Megan,” she said concerned as she drew her wheely chair close to me. “Have you been dieting?” “No, I told her. I’m so hungry, I’ve been eating more than I ever have because I am so hungry but I don’t ever stop feeling hungry. Lately when I’ve tried to eat I throw up. I guess I’m sick.” “Have you ever heard the word bulimia?” she asked me. “Are you making yourself throw up because you think your fat?” I was confused by the question but I was interrupted before I could answer by the door swinging open and a nurse coming in. “There is a lot of sugar in her urine.”
The pediatricians eyes grew wide as she watched the nurse prick my finger with a needle and put it into one of those little machines I had seen Allie use. My blood sugar was almost 600. (Normal is between 80-120). Things began to move at a rapid pace as my mom was called back into the room and the doctor told us we needed to get strait to the hospital for an antibody test. She hastily explained that I had diabetes, she presumed type 1 but said they would confirm that at the hospital. In a few sentences in between making phone calls to Lawrence and Memorial hospital she explained that my white blood cells were mutant and had mistook my pancreas for a foreign invader and had killed the insulin producing cells of my pancreas. She told me that tomorrow I would go to Hartford Children’s hospital and they would take care of me there. I asked her if I shouldn’t eat until then. “You can eat whatever, just don’t drink soda or juice.”
I sat in numbed silence as we drove the short distance to L&M hospital. My mom crying called our pastors wife as we drove. At the hospital the lab took blood. I waited around in the waiting room until a heavy set woman came with a clip board. “You have the antibodies active in your blood, the diabetes is type 1. As your doctor told you have an appointment made at Hartford Children’s hospital tomorrow and they will teach you every thing you need to know. Okay? ” “Okay.” And then we left.
To this day I have no idea why I was not kept over night in the hospital and why I was not put in the ICU and immediately started on insulin. I don’t know why I didn’t see a doctor at the hospital. It was only by the grace of God that I did not die that night. My blood sugar was so high and I was in such an advanced stage of ketoacidosis, I could have died that night.
We got home late and I was hungry. Even though the Dr. said I could eat anything I though that since I had diabetes I should eat something low carb. I ate a piece of lasagna! I had no idea what a carb was! If my blood sugar was 600 before the lasagna I can’t imagine what it got up to that night. Definitly high enough to kill me. It was the first night in weeks I had slept through the night. I was desperately sleep deprived because even at night I had to pee every 15 minutes to an hour. This night I was so dehydrated I had nothing left for my body to pee.
I called Allie that night..”Allie, I told her, I was at the hospital today, I have type 1 diabetes.” “Oh my gosh! Oh my gosh! Mom! She yelled, Megan has diabetes! Type 1…”
My alarm went off while it was still dark the next the morning. It was time to make the hour drive to the hospital. I tried to move. My legs… my legs weren’t working. My muscles were contracting painfully as I experienced severe dehydration from all the peeing. My mouth was filled with gross syrup taste. I rolled off the bed using my arms to support me. I don’t remember the rest of this morning or the drive to Hartford. I only remember dragging myself out of the house leaning on stuff to support me as my legs refused to work.
My mom, and step dad at the time along with my 2 younger homeschooled brothers and sister came.
My next memory is of receiving my first dose of insulin. The doctor explained that this was a “shot in the dark” because there was no way to know exactly how much to give me because every person’s body produces different amounts of insulin. The diabetes educator Brittany told my mom that she was going to have to learn to give shots, that this was life now and besides her protests she was going to have to administer the first dose. “I can’t do it!” she cried, the syringe in her hand. “You don’t have a choice, Megan needs this if she is going to live.” I pinched my arm and held it towards her, “Come on, you can do it. See, I don’t even feel it at all,” I lied.
The next 8 hours or so we spent in a room with a diabetes educator being bombarded with a huge amount of information. Thankfully at almost 14 I was very mature and memorized every piece of information because I knew my life depended on it. How to draw up a syringe, what is high blood sugar, what is low blood sugar, what to do when you’re sick, how to treat a low, ketones, how to test for ketones, how to get the bubbles out of the syringe, what to do in the event of a seizure, don’t let the insulin get too hot or cold, what is a carbohydrate, how many carbohydrates are in every food, and on and on and on…
I understood for the first time what insulin was as I studied a cartoon drawing in a pink panther book that was designed to teach kids about diabetes. There was a bus inside a persons blood stream labeled “insulin.” Boarding the bus was sugar and nutrients from the food eaten. The bus in the illustration carried it’s load to the cells and loaded them up with their fuel. In another illustration, the insulin was a key that unlocked the cell and allowed the fuel to go in.
I was sweating profusley soaking my clothes. My hands trembled violently. I could bearly pick up a syringe or take notes with a pen as my body reacted to my blood sugar slowly began to come down. “I’m low,” I panted to the diabetes educator as I pointed to the page of the book where the illustrated pink panther was experiencing hypoglycemia. “Prick your finger and find out.” It was was still very high she explained but that I would feel like this for a while because my body had gotten used to the feeling of high numbers.
We took a brake for lunch. The only place to get food was a Friendly’s in the hospital. A Friendly’s! My siblings loaded their plates with fries and ordered extravagant ice-cream sundaes. I ordered a salad and water. We took the food back up to the education room and the educator helped me look up the salad in my new carb counting book. I was surprised to learn that it was actually very high in carbs. I drew up my second dose of insulin so I could eat and she pinched my arm as I poked it into my skin and pressed down on the syringe feeling the insulin burn like cold fire under my skin.
I still don’t know why at the end of that day I was sent home. Most newly diagnosed diabetics are kept for a time on an IV to restore electrolytes and fluid from the dehydration. I was not.
The trip home I lay back in my seat exhausted to my core. I clenched my teeth fighting the urge to vomit.
Within weeks the insulin was restoring my body. I gained weight and was able to retain fluid. My skin took on color again and was no longer cracked and flaky. On the outside, I looked like a healthy teenager, but on the inside, one of my vitals organs had been destroyed by my own body. And living with one of your organs missing is no walk in the park. Yes, I can be healthy and am healthy but it takes 24/7 diligence and work to stay alive. If I ever stop taking my insulin and pricking my fingers I will die.
I’ll end this with a list of symptoms of type 1 diabetes. Knowledge is power. If you have diabetes your own knowledge is what will keep you healthy and alive. Doctors, especially pediatricians and emergency room doctors are unfortunately dangerously uneducated about the disease. Misdiagnosis is way to common. Diabetes gets misdiagnosed as everything from the flu to bronchitis to failure to thrive, and in teenager girls especially, an eating disorder. Children die at the hands of uninformed doctors. After the white blood cells kill the insulin producing cells, time is limited before it is to late. In my own story above I went from seemingly healthy to very sick in a matter of 2-3 weeks. Youtube, “my child died of type 1 diabetes.” Unfortunately there are to many stories where the doctor prescribes tylenol or antibiotics and sends the patient home.
This is not to say there aren’t some great doctors out there doing everything they can to find out more about this disease and help their patients.
Signs of type 1 diabetes:
sudden unexplained weight loss
symptoms of dehydration
mood swings and sudden change in personality
a “sweet taste” in the persons mouth
fruity smelling breath
fatigue and exhaustion
increased appetite or no appetite
My callused and scarred fingers after being pricked at least 6 times a day for the last 10 years
Since this is the internet and I’m writing about a medical topic I want to put a disclaimer that I’m not a doctor or a diabetes educator. I’m sharing my own experience of living ten years with this disease.