Monday, August 18, 2014
Tuesday, April 29, 2014
Recovery is an ongoing process; It's as simple as that.
My previous blog posts about diabulimia invited readers into my closet, filled with skeletons.
I chose to reveal my secrets and deepest confessions, in order to raise awareness, and help other type 1 diabetics, who may have been struggling with the same demons.
My confession is this: I relapsed.
"Relapse" is a word I choose to use carefully; I'm not a drug user, however, I abuse my insulin—the drug needed to keep me alive.
My relapse started two days before Christmas (2013).
I was upset about all the weight that I had gained—weight that stuck to my body like glue. This weight was, for lack of a better word, "healthy weight." Weight that in September, I had been proud to bear with a hemoglobin a1c level of 7.4%.
I credit my Dexcom for helping me realize where I needed to make changes to my basal rates on my Medtronic insulin pump. The Dexcom opened my eyes to my blood sugar patterns. These patterns were adjusted consistently. I watched everything that I ate. I gave up Diet Coke for lemon water. I decreased my carbohydrate intake to 40 or less grams per day, all in the name of the diagnosis of "controlled type 1 diabetes, without mention of complications."
I had my Christmas shopping done in less than 4 hours. I packed up my things and journeyed home to stay with my family for the holiday.
I made a conscious decision to stop bolusing for my food. The only insulin I was receiving, was my 31.2 units of my basal, or "background" insulin.
I savored every bite of Christmas cookies and mashed potatoes. I did not bolus. My blood sugars were averaging a startling 330 mg/dL, but I didn't care.
Thirst came quickly; I dove back into downing Diet Coke, which only ended up increasing my thirst. I was getting up at night to use the bathroom. My sleep was constantly interrupted—I woke up grumpy.
Eventually, after the holidays, I stopped checking my blood sugar. I knew it was going to be high, so, what was the point in wasting my precious OneTouch test strips on a bad number?
New Years Eve came, then my February birthday. No bolus, or blood sugar check for my birthday cake. I felt no remorse.
I checked my weight around Valentine's Day, which had come down 12 pounds since Christmas. I was not happy with the result, but, my pants did feel loose, and for that, I was grateful.
March was quickly approaching, and I was giddy with excitement of traveling to JDRF Government Day in Washington, DC. I travelled alongside my best friend, Jenna, who is also a type 1 diabetic.
Packing for my trip was easy—I had all of my clothes ready, and I made sure to not pack high heels, with all of the walking we would be doing on Capital Hill. I knew that while I was there, I would need a set change, so I did pack extra infusion sets. I brought one vial of insulin, which was exactly enough for my reservoir, which was filled with 200 units.
Throughout the trip in DC, I checked my blood sugar maybe four times. I was lying to everyone—all of these new, fresh faces. I wanted to appear as though I was in the best state of health, for being a type 1 diabetic. I met quite a few parents of type 1 children, and one woman had remarked how "wonderful" I looked, for having lived with this disease for 23 years. I felt awful, and guilty, on the inside. I couldn't reveal my secret.
Also during this time, I chose to not renew my lease with my apartment. I had a realtor, and was going through the stressful process of buying a home.
Stress, actually, is an understatement. It was pure torture. It was a lot to handle, and I thought by avoiding my diabetes, that it would make it easier. My logic was jolted—I could barely keep two thoughts together.
I would struggle upon waking up everyday. I had my clinic manager's telephone number on my iPhone screen, ready to dial her, and tell her that I wouldn't be making it into work for the day, however, I couldn't bring myself to do it. I don't like disappointing people (I'm sure that no one does), and I didn't feel like explaining myself over a telephone.
No one at work knew; I didn't want to tell anyone and end up revealing my weakness.
I also did not tell my family.
It's very hard to explain type 1 diabetes, and the psychological impact it has on a person who lives with it. I chose to avoid that road, because I didn't want to deal with it.
March 31st came, the day of closing on my new home. I left work early to meet my realtor at the title agency.
The following week, I moved my life into my new house. I moved every single box that had staked out in my tiny apartment. Moving was miserable; I was so out of shape and weak from my high blood sugars. My muscles were so tight, and I was stiff.
My family and my best friend helped me move my furniture into my house thereafter.
I learned how to mow a lawn, which was a terrifying experience, being that it was brand new to me. This past weekend, I mowed my entire lawn without supervision from my father (or my neighbor), and I literally thought that I was going to die. I almost called the ambulance for myself. I checked my blood sugar that morning, just for shits and giggles, and it was 548 mg/dL. I figured, with all of the push-mowing that I would be doing, it would come down on its own, and I wouldn't have to worry about it.
Boy, was I wrong.
The sun was up, and the temperatures had increased to 75 degrees. I had to take multiple breaks between finishing the lawn; My heart felt as though it was going to beat out of my chest, and I couldn't catch my breath.
I sat down on the concrete steps, on the side of my house, that led into the kitchen. I was panting, and begging God to let me live. I knew that I had taken one too many chances, and I literally thought, "This is it—I'm going to die right here in my driveway."
Thankfully, I caught my breath, after resting for 15 minutes. The tightness in my chest had subsided, and my pulse was back to a normal rate.
After I finished with the yard work, I checked my blood sugar—488 mg/dL. I chose to take a correction bolus, only because I truly thought I would drop dead, at any moment.
It was only this last week, that my eyes were truly opened.
I met a 33 year old female, who had been diabetic for 10 years. Her list of complications was extensive—a gastric pacer, a neurogenic bladder, and a left foot amputation. She let me look at it. All that was left, was a heel stump. She told me her story, and I cried. I hugged her, and thanked her for letting me see what could potentially be my future.
That same afternoon, I called my endocrinologist's office to schedule what would be my first office visit since September.
I saw my endocrinologist today.
My hemoglobin a1c was 10%, which surprised me—I thought it was going to be closer to 14%.
Dr. Christofides did not judge me, nor did she criticize me. She listened to me, and helped me form a plan.
It's currently 8:31 PM, on Tuesday, April 29, 2014. I have a plan for my health, and I have until June 3, 2014, to make an improvement.
My doctor and I have a plan.
I have a plan.
My plan is this—take small steps toward recovery. I am a work in progress; I am not perfect, and I am not a "model" patient. I am going to make mistakes, and I know that being a "repeat offender" is only going to hurt me in the long run. So, I am making conscious, daily decisions about caring for myself. Being here for me, and thinking of me.
It's like Zig Ziglar had said, several times, in his career as an author and motivational speaker—“It's not how far you fall, but how high you bounce that counts.”
I'm going to take that chance, and see how high I can bounce.
Thursday, November 14, 2013
Tuesday, October 29, 2013
Thursday, October 17, 2013
Monday, September 23, 2013
I have had type 1 diabetes, or "juvenile" onset diabetes, since 1990.
I was four and a half years old when I was diagnosed.
Living with type 1 diabetes is no easy feat; the decisions I make are primarily based around my disease. I am consistently testing my limits, wondering if the choices I make will affect me and my disease in a positive or negative way.
People try to understand – people say that they can “totally relate,” when the reality is: You Think You Know, But You Have No Idea.
A day in the life? I am a walking pin cushion. In the days before my Medtronic insulin pump and my Dexcom CGM, I had to test my blood sugar up to eight times per day. Can you imagine drawing blood from yourself before and after each meal, or any time you didn’t feel good? How about injecting a chemically engineered liquid that saves you from winding up six feet under, more than 5 times per day? The thought makes many nauseous, but it’s unfortunately become routine for me.
When my parents and my endocrinologist gave me the reins to take care of my disease on my own, I abused it. More on my story with diabulimia can be found in earlier posts.
I was denied the privilege of having my driver’s license at 16 – my parents wouldn’t even let me get my permit until I started taking better care of myself to bring my hemoglobin A1c down.
I finally obtained my driver’s license at 17 and a half years old – well into my junior year of high school, when most of my friends had already been driving since they turned 16.
I was also unable to attend college after graduating high school, which at the time, was hard to understand from my parents point of view. I wasn’t healthy, I was having too many high blood sugars, and having intermittent seizures from low blood sugars – they couldn’t trust me to take care of myself, and they were scared. I understand this now, but at the time, I was angry. It was no one’s fault but my own. So, while my friends were getting ready to pack up for college and have the experience of their lives, I was working two jobs and applying at technical/trade schools for medical assisting and phlebotomy.
In 2007, I started using an insulin pump, but the process to get one wasn’t easy. I had to keep a log for 60-80 days. I had to write out my blood sugars (up to eight times per day), the food that I ate, the amount of insulin I used, and the correction that was needed. My doctor even had me wear a CGM, or “continuous glucose monitor” for seven days. The needle/sensor that they injected into my belly was a good 1” long, and I won’t lie, it hurt! The CGM (circa 2006-2007) looked like a cardiac Holter monitor, and it was concealed in a black bag with a strap that I had to wear on my shoulder, like a purse. I had to put a Ziplock bag over it when I showered. It was exhausting, but for the first time, I wanted the change. I worked my butt off, and my hemoglobin A1c that was consistently between 10% and 12%, dropped to 7%, one month before I received my insulin pump. I achieved that on my own, and I was so proud of myself.
At that point, I was 21 years old, and had a great job with great insurance, but I was still worried about the cost of an insulin pump.
After my physician submitted a letter of medical necessity to my insurance company, all I had to do was wait.
I finally received a phone call from a “Juan” at Medtronic. The call came while I was getting ready to sit down to dinner. Once Juan delivered the news that, yes, I was approved to receive an insulin pump, and yes, it was covered 100% by my insurance company, I sank to my kitchen floor and started crying. This was going to change my life. This would possibly extend my life. No more injections? Like, ever? I couldn’t believe it.
Pump training was miserable. All great changes are preceded by chaos, am I right? My dad was laid off from work at the time (winter of 2007), so he drove us to Toledo and attended the 3 hour long class with me. It’s funny, to me, because those are some great memories of just my dad and I.
We learned how to draw up insulin into the reservoir, how to inject the infusion set, how to remove the infusion set, and how to disconnect from your pump. Confusing, right? Are you still with me?
For a week, I had to infuse saline with my pump, instead of insulin, just until I got the hang of it. I was still using injections, but I would have to remember to enter my blood sugar and the amount of carbohydrates (measured in grams) I was eating into the insulin pump, so it could calculate the amount of insulin (or saline) I would need to cover my meal and my blood sugar, if a correction bolus was warranted.
The most hilarious part of training and learning to use my insulin pump on my own, were the mini “freak outs” I had. I was frustrated with learning. I couldn’t get it perfect each time I tried, and that made me crazy (because I’m a perfectionist)! I remember running downstairs before I got in the shower, telling my dad that I couldn’t disconnect my infusion set from my body—it’s going to be stuck there forever! I’m going to die! Oh my God! Help! It always makes me smile when I think about it, how overwhelming change can be. I am the world's biggest drama queen, because I made my dad attempt to disconnect my pump with a pair of PLIERS! So hilarious!
I moved to Columbus in 2009, which was nerve-racking. How would I be able to care for my diabetes so far away from home and the familiar? At the time, the insurance I had through the first hospital I worked at had ridiculously expensive co-pays for my insulin and my pump supplies; Three hundred dollars plus! I went back to using injections temporarily, because it was what I could afford.
The first endocrinologist I established care with through Mount Carmel was awful. He never kept eye contact with me. He didn’t explain his plan of care for me. He billed my insurance company as Type 2 Diabetes. I was angry. He never listened to me. I felt like he didn’t want to help. I was dealing with my own personal hell, and this guy wasn’t making my life any easier.
I would intermittently just skip doses of my insulin to save money, and because I was still struggling with diabulimia.
At the time, I was working full-time at a cardiology office, where 14 physicians dictated my whole shift. I was given dirty looks when I would take a break to test my blood sugar, or run to the break room to drink juice for a low blood sugar. To the doctors I worked for—who only knew the cardiovascular side of medicine—stopping to check my blood sugar, or treating a low blood sugar meant that I was "brittle," or "uncontrolled." It meant weakness.
There was one exceptional cardiologist that I worked for, who advised me to stop seeing the endocrinologist I had just established care with, and to make an appointment with one he recommended. “You’ll love her!” he exclaimed. His excitement for this endocrinologist gave me newfound hope.
Since establishing care with my new endocrinologist, I feel confident working 50+ hours a week and living alone.
I wish someone could have seen my mini “freak out” (the sequel) when I had to change the sensor for the first time by myself. I was dancing around, fake crying, and being so over dramatic (as usual) about it! I had Kerri, my Dexcom representative on speaker phone, coaching me through it. It took me about a half hour to insert a new sensor by myself, and now, months later, it takes me less than 10 seconds to insert one!
The Dexcom has been extremely crucial and beneficial to my disease. I love being able to know what my blood sugar is, at any given moment. I can confirm the blood sugar reading on my Dexcom by doing a finger stick glucose, and 90% of the time, they match.
Now that you know a little bit about my background, let me tell you about the “Diabetes Police” or the people who constantly criticize the way I care for myself and my diabetes.
The “Diabetes Police” are those individuals (even a group of people) who constantly feel the need to judge everything I eat. These people are sorely uneducated. They shake their finger at me when I have ice cream or pasta. They tell me I will eventually die from eating these things. Are you kidding me right now? You know what I want to say to them? “If you keep eating the way YOU eat, you’ll end up with Type 2 diabetes, and then we’ll actually have something in common!”
Just because I have diabetes, doesn’t mean I can’t eat something. I can eat anything I desire, anything I am craving, anything that a “normal” person eats, I just have to make sure that I take the correct dose of insulin to break down the nuclear content of the food, in order to convert it into energy, like someone with a working pancreas does.
If I don’t take enough insulin for something I eat, I’ll have a high blood sugar (hyperglycemia). When my blood sugar is high, I need take insulin to bring it back down. This is known as a correction bolus. I don’t feel good when my blood sugar is high. I feel grouchy, impatient and so thirsty. I feel feverish, like I have the flu. I need to drink lots of water to prevent the blood sugar from rising even higher, and from developing ketones in my urine. Ketones in my urine could be the beginning stages of DKA (diabetic ketoacidosis), which is potentially fatal to type 1 diabetics.
If I take too much insulin, or get too much exercise, I’ll have a low blood sugar (hypoglycemia). When my blood sugar is low, I need to eat 15 or more grams of carbohydrate (with a small dose of protein to stabilize the blood sugar), like peanut butter crackers, or Goldfish crackers. I also need to drink juice, or a regular soda—something with fast-acting sugars. I can eat candy, such as Smarties, or Nerds (my favorite!) to bring my blood sugar back up to an acceptable level. I can usually feel when I am low; you feel shaky, sweaty, and hungry. I also get very irritable and near-impossible to deal with. I usually explain to others that my low blood sugars feel like borderline intoxication. I have trouble thinking and processing information. After I eat a snack, I usually wait 15-20 minutes to recheck my blood sugar. If it’s still low, I have to eat more to bring it back up. The lower my blood sugar gets, I can become combative. My mom used to tell me I had "super human strength" when my blood sugar dropped to a level where I required assistance. Falls put me at risk with extreme lows. Low blood sugars can be just as dangerous as a high blood sugar; in the past, I have had seizures from going so low. This is considered a true diabetic emergency—I would need the assistance of an EMT to administer what is called a Glucagon (a manmade hormone injection) to raise my blood sugar quickly. I have not had a true emergency since 2001, and for that, I am grateful. The side effects of the Glucagon shot are not pleasant! Vomiting and feverish for hours!
Having type 1 diabetes has also subjected me to teasing and ridicule from people. Co-workers, friends, family members, and strangers offer me their two cents on a daily basis. I don’t mind answering questions and providing education where I can, but the teasing, especially since I am a 27 year old woman, is uncalled for.
I currently work in a medical office, and each day at lunch, there is a gang of women who are ready to pounce on me at a moment’s notice when I walk into the break room to make my lunch.
My lunch usually consists of a large salad—not because I have to eat it, but because I want to eat it; I enjoy salad. These women always roll their eyes at me and announce, “Oh, here she comes with her huge salad! How do you eat that? Ew! I’m so glad I don’t have diabetes so that I don’t have to eat that crap.” One day, I had finally had enough, so I provided detailed information and education on type 1 diabetes. I don’t think they listened to a damn word I said, because they were still asking stupid questions like, “Did you get diabetes because you had too much sugar as a kid?” and providing commentary, such as “My cousin has diabetes and he is so overweight. Did you lose weight to become a type one?”
The only thing you can do in a situation like this is to find a different place to eat your lunch every day.
I once had a physician, whom I worked for, tell me that I would lose my feet from eating too much sugar. First of all, you’re a doctor—you should know the laws of diabetes have changed, and type ones can eat whatever they would like, to their heart’s desire, as long as a sufficient amount of insulin is provided. His nurse would also constantly badger me about every single thing I put in my mouth—even gum!
Strangers are a whole different playing field. I have people accuse me of wearing a pain pump, saying things such as, “Wow, you don’t look like you are in as much pain as I am in. My doctor won’t even prescribe Percocet.” I explain that it is an insulin pump to help infuse insulin for my type 1 diabetes. The woman then goes on to say that, “You must have it bad, then.” I tell her that I wasn’t aware a ‘bad’ kind existed.
My mom tells me stories all the time about when I was younger, and the terrible things people said to her about me. “Say goodbye to your old daughter,” one woman had said. “She’s gone. This is the new Meghann.” What sort of heartless person says that to a terrified young mother?
The only thing I can do is to just ignore the ignorance, continue to provide education at each opportunity, and smile through the tears.
As I have said, many times before—diabetes is hard.
I assume I was chosen by God to live with this disease, so that I can be a symbol. What kind of symbol, you ask? A symbol of strength, courage, and bravery. I want to use this opportunity to be a light in someone else’s darkness—a sign of hope.
To me—That’s worth fighting for.