I was a 26 year old ER nurse and thought I must have contracted chronic fatigue syndrome from one of the many patients I treated in Baylor ER in downtown Dallas. I was just so darn tired. I remember working nights and struggling to stay awake - well who isn't sleepy working nights? I had to pee all the time - again what nurse doesn't put off "taking care of her own business" to take care of patients? We all have to pee all the time - nothing new there. Yeah, I had dropped a few pounds and just thanked the "fat Gods" for finally adjusting my metabolism to match my food intake! I had been a nurse for 6 years and treated patients on med/surg units with diabetes, in ICU with diabetes and DKA, and countless in the ER who were new onset, in the midst of a hypoglycemic episode that caused injuries, or just dealing with some of the many complications that diabetes may inflict. Never in a million years did I think it was happening to me!
I remember working one night and the Bat Phone rang (our ER slang for the red phone that alerted us to incoming ambulances). I had the sickest thought in my head - "please be a GSW to the head". GSW was gunshot wound and when it occurs in the head, the outcome is usually quick and usually fatal. Horrible, I know. But I was so tired, the thought of having to care for someone intensely for a few hours seemed more than I could bear. It wasn't a GSW and even though I didn't have the strength, but I trudged on. Not too much later, I saw my primary care physician during a shift when he had come to see another patient. "John, something is up with me. I think I have Epstein Barr or chronic fatigue or something. I am just always exhausted!” He asked what I had been up to lately and my answer was my typical busy life, "Well I am in the midst of buying a house, I have a new boyfriend, I am working extra shifts and partying with friends when I have an open evening”. He raised an eyebrow, "What's your diet like?” Hmmmmm, I had to think. When was the last time I ate a meal? With all the running around I was doing and working nights, my top meals, were candy bars, take out and cafeteria food (yuck!). And of course, I was too tired to exercise so my basic pillars of health: food, sleep, exercise were basically non-existent. No wonder I was tired. His advice: get some sleep, eat a few square meals, and come see me next week.
He wanted to run some fasting lab work, so I had to go without food all night during my shift (that is HARD to do!). Looking back, I am pretty sure he knew what was up, but I was clueless. My fasting glucose was 140! He asked, "Sure you didn't sneak Snickers on the way over?” "Nope - nothing". He didn't diagnose me then, but suggested I do some fingersticks at work after a meal.
I was horrified when the meter read > 300. There had to be a mistake. My nurse brain knew what it meant, but searched for anything that might explain the number other than the dreaded DM. In the weeks to follow, I was started on oral hypoglycemics and sent to an endocrinologist. He confirmed I had insulin antibodies and that even though I wasn't insulin dependent yet. I would be. Honeymoon phase they called it. Great! Who did I just get married to?
So I exercised and starved myself to make the numbers on my meter tell the story I wanted to hear. I worked side by side with a dear friend who was type I (love you Debbie!). She shared her story and tried to help me along, but I wasn't having any of it! I was just fine with my little pills and I would NOT be crossing the line to needles. No way. No how. I was a nurse! An ER nurse at that! We are the ones who take care of poor diabetics. We are on the other side of the triage desk. We are there to provide empathy to those poor souls who have this affliction. I am not, cannot be one of "them". They call this stage denial - I did it perfectly!
|Party Time! No worries|
|Rocking the bikini!|
|Dehydrated and worn out!|
Eventually the pills were no longer doing the trick. I was still losing weight and I was oh so tired. I remember driving to an endocrinology appt. I was on the freeway, doing 65 or 70 mph and I just wanted to close my eyes, just rest a bit, so I had more energy. The fact that it would be a lethal decision was lurking somewhere in my consciousness, but the idea of sleep was so enticing. I didn't succumb, but it took all the will power I had not to nod off driving down I30. It was at that point that I asked for insulin. I didn't care anymore about the needle. I just wanted to feel better. My endo wanted me to wait until I could go to diabetes education. I pointed out that if our discussion been about any random patient in the ER the day before, he would have no problem giving me an order to administer insulin. I didn't need to practice on oranges and learn what insulin did. I had those skills. I wanted to feel better NOW! So that was it. On July 5th, 1991, I took my first injection of insulin that day alone in my kitchen. I became insulin dependent the day after Independence Day - ha!
The needles and injections were fairly easy to adapt to - just had to get used to the patient being me, but I had the skills. Hypoglycemia, however (low blood sugar) was an aspect of the disease I wasn't prepared for - but it is part of the gig. It happens. Sometimes your food intake, activity, and medication don't match up and your blood sugar plummets. This has to be one of the WORST feelings in the world. I still can't stand it and it scares me. The first time it hit, I was home alone and became dizzy and diaphoretic (sweaty) like no patient I had seen before. Fluids were literally pouring out of my skin and puddling on the floor as my body attempted to correct my blood sugar levels by concentrating my blood. I had a hunger like I had never known. I only knew I had to eat. And eat I did - much more than the 15 grams of carbohydrates that is recommended but there was no way you could have stopped me. A cup of orange juice, are you kidding? I am dying here! I need food! And lots of it! In a few minutes the fog cleared and my blood sugar came back up (most likely a little too much). Mr. Hypoglycemia, meet Patricia. Your free gift with purchase. He comes with your husband Mr. Diabetes
My second date with Mr. Hypo was in a Walgreens and I started noticing the dizzy, sweating feeling come on. I knew I needed to get some carbs so I head over to the snack aisle. There are hundreds of cookies and candies in front of me, but I was so fuzzy I couldn't make a decision. I just stood there looking at all the options, swaying back and forth, and trying to focus my blurry vision. Anyone watching would have thought I was high on something (irony - I was low on something!) I finally selected a bag of Pepperidge Farm Chocolate Chip cookies, sat down Indian style right in the middle of aisle and chowed down. Cue the Bob Marley music!
So life moved on. I kept my game face on and tried to make sure I didn't worry anyone. My Mom’s advice "If it's not a big deal to you. It won't be a big deal to everyone else". So I was very open and didn't try to hide it from the world or cover it up. I think almost every Firefighter in the Dallas Fire Department saw me inject in the ER break room. I wore diabetes like a badge of honor, proving I was tougher than it was and I could control this thing that had taken over my body. I ate pretty much what I wanted and did multiple injections to cover what I ate, I altered my long acting insulin according to my work schedule - sometimes I needed the insulin to peak at night when I was working, but on days off it needed to kick in during the daytime. It was a constant roller coaster but I was doing what I wanted. I was "winning"; I was doing diabetes on my terms. Or so I thought.
God teaches us lessons in many ways. I learned one from a man who presented to the ER when I was working triage. He was a black male, probably mid 50s who had suffered nearly every insult uncontrolled diabetes can inflict. He was blind, partially paralyzed from a stroke, with limbs partially amputated, his dialysis shunt was in his thigh because the vessels in his arms (the typical place for a dialysis shunt) were shot and he was disoriented. I looked at him and fear racked my body. Real terror. This shit is real, it is dangerous, and I have it. I wept. His memory still brings tears to my eyes. I didn't (and still don't) want to end up like that.
So I swung the pendulum to the other direction. I stayed in, weighed, and measured everything I ate, exercised diligently, changed my work schedule, and just "did" diabetes. Textbook. To my disappointment, I still had numbers that weren't perfect. Every finger stick became a judgment of my character and my worth. "Bad" blood sugars = "bad" Patricia. I wasn't doing it good enough. My type A personality and perfectionist tendencies did not serve me well. I was really hard on myself as I “failed" daily to control this thing that had killed off my pancreas. I wanted off this crazy ride! I couldn’t do it perfectly. It was too much and it had beaten me down. Life was not fun. Diabetes was not fun. I was frustrated and couldn't see a way out of the dark place that consumed me.
God sent another angel to rescue me. Another nurse friend was in the midst of a divorce and had been seeing a counselor to help her cope with the situation. She encouraged me to make an appt. I did and it changed everything. What I came to learn about myself was that diabetes wasn't my problem. It was how I handled problems. I was an avoider and a pleaser. My pattern was to power through uncomfortable situations, get busy, stuff my emotions, act like everything was ok, avoid conflict, try to live up to what people expected of me, please people, and put other's needs above my own, all so I wouldn't have to deal with my own "stuff". We nurses love to fix others so we don’t have to fix ourselves. For many aspects of my life, it worked, but diabetes couldn't be ignored or pleased or avoided. Sort of like a two year old, it demanded attention.
I did a lot of soul work, inner exploration, and crying. My counselor was the first person who said, "It is really awful that this happened to you" and when she did the flood of tears poured forth. No one else had acknowledged my tragedy or could sit with my tears. My friends and family just wanted to cheer me up. No one wanted to be negative. Tears are uncomfortable. She helped me to see the truth. I wasn’t OK. I wasn’t dealing with it. I wasn’t strong. A strong person has to face the situation and deal with it. Not hide, ignore, and act like nothing happened.
Her compassion and insistence on the truth helped me to accept my situation. I had diabetes and my life would never be the same. Ever. I had to grieve my non-diabetic life so I could accept this new one. I was in the throes of most of the stages of grief: anger, denial, bargaining, and depression. She helped me with the most important stage: acceptance. I had to face that I couldn't run from this situation, but I could turn and embrace it. I saw that my life would never be without diabetes as a part of it, but it didn't have to define me and it didn’t have to be a bad life. As I changed my viewpoint, my life got better and I became happier. I worked through some demons from my past and let them go. I learned that my blood sugar readings were just bits of information to help me better understand my insulin needs, not something to be done perfectly, or a reflection of my worth as a human. I came to appreciate that you cannot control diabetes, but you can care for it every day. I accepted that I wasn’t being punished for past mistakes. I learned to be nicer to myself.
A lot has happened in the nearly 24 years since that time; insulin pump, husband, kids, career changes – the stuff of life, with a little diabetes sprinkled in. And I am grateful for all of it.