“Never criticize a man until you’ve walked a mile in his moccasins”
—American Indian Proverb
We are approaching another National Diabetes Awareness Month (November) and in that month another World Diabetes Day (November 14th). During this time, the diabetes community goes blue, reaches out to other families living with diabetes, shares their stories, and creates awareness of diabetes, the types, the symptoms and its real impact. So many hear “diabetes” and believe it is caused by fast food and candy, can be managed with Splenda and exercise, and those with any type of diabetes battle this perception daily and use every opportunity in the month of November to get the word out.
For the over five years I’ve been working with JDRF I’ve been on the outside looking in, as I myself do not have type 1 diabetes or a child or spouse with it. I’m up to my ears in books and papers, but I can only know about type 1, not life with it, unless I one day am given that diagnosis. So, I’m way passed the perception that diabetes in Snicker-induced but not even close to understanding what it is to have diabetes. I not only wanted to continue my efforts in spreading awareness, but also wanted to become a bit more aware myself.
It was recommended to me a few years ago by an acquaintance to try saline injections and the pump. As someone without diabetes, it said it gave him perspective. I thought it was a great idea, and there it lingered in the back of my mind.
Then when I moved into my current position and turned myself back into a student, devouring as many books and studies in as short amount of time as possible all the while meeting more families and individuals living with type 1, it became strikingly apparent. While I learned the ratios, how to carb count and how to administer a bolus and correction, I had never had to do the math, just glance at it and appreciate it. I had never taken a shot outside of for the flu and vaccines, and never given myself one. I knew of the pumps on the market and the ones destined to be as well as continuous glucose monitors (CGM), but never had one connected to me. In a group of people living each day with type 1 diabetes, I am the nerd, the bookworm. In a group of healthcare professionals treating people with diabetes every day, I am the research nerd, the research bookworm. I knew that just a bit of perspective might mean I learn something new, and being such an academic at heart, I cannot ignore that possibility.
After a brief appointment, I asked my endocrinologist.
“I, uh, know a lot of people who have tried saline shots, and have done pump trials to gain some hands on experience. I would like to do that if it is possible…maybe.”
Her eyes brightened, and she thought it was a great idea. Phew. I had a hard time asking. I told her I wanted to go through a “diagnosis” to learn the management decision making process a bit better. I felt guilty, because even though the electrical discharges in my brain have been abnormal, my immune system has not gone rogue, so there really is no decision I have to make that my body doesn’t already have covered. I have no factors that would lead to one. My beta cells compensate for highs and lows, and everything that can influence highs and lows, including my erratic exercise schedule and carbaholic ways. Who am I to ask for this trial that really pales in comparison to the real deal? But even though I knew I would be spared from shock of learning of the disease, the sick feeling of highs and lows, danger in short-term complications and fear and stress…even the simple act of testing more than 3 times a year and learning how it felt to be a pin cushion and learn more about my body and myself would be worth the embarrassment of asking to do it.
D-Day, October 5, 2011
I really thought about cancelling my diagnosis. I’m tired. I’m under a lot of work stress and I need to go back to Target because I forgot sandwich baggies. Also, my stomach hurts today.
The last few months have been rough and uncertain. I really just don’t need another thing to do.
But then again, no one can choose the day of their diagnosis, and if they could, they never would. So, I get in my car to meet with a certified diabetes educator (CDE).
I made sure that I was not taking her time away from patients so she could treat my fake diabetes (from now on called “fakeabetes”). There were no patients at this time. I double checked. No patients waiting to be seen. People with actual diabetes (also called “realabetes”).
I told her that I didn’t just want to jab myself more times a day than usual (I’m a clumsy person to begin with), but I also wanted her to create a carb ratio and insulin sensitivity factor (ISF) for me. I never ask for math. She made mine super easy.
It’s not that I’m bad at math, it just takes more application for me. I was an “A” or “B” student in math and science, but after my second year of college when it was all fun and calculators, I became lazy. Nowadays, applying basic mathematical principles usually starts with a Google search. Because my blood glucose levels would stay in a normal range, my math would be infinitely easier, and I realize that, but still…math and I aren’t buddies. I love you right side of my brain, who treats me well. Curses to the left side.
So, she started filling me in on my days with fakeabetes. How often I should test and when, what she tells newly diagnosed patients and what she doesn’t. I really wanted to learn how to apply what she was telling me as if I didn’t know of the disease, but couldn’t keep my mouth shut, so we talked about research, artificial pancreas, treatments and people we both knew and volunteer with. I take full blame for that.
So for the first time, I left that office taking more resources than I had taken in.
First realization – I’m going to need a bag for this, and then I’m going to need a bigger purse so the the little bag can fit in it.
Oh crap, I’m going to need a sharps container. Go to Walgreens. Get my strips, get the container. Already, fakeabetes is bugging me. I hate trips to Walgreens for scripts, and I do it too often in my opinion as is (I do con others to do it for me with the promise they can buy candy once there). Get home, absolutely starving…
Alcohol wipes. Dammit. Sounds like another con job is in order…
Finally, the only kitchen counter I have is now designated as my supply area (who needs toast?), and I check my blood sugar because I want to eat. 78. Okay, that hurt. Testing only a few times a year means my fingers sting post-testing when I type or touch things or look at them.
Ratio time. Wow. I eat a lot of carbs. At 78 I wouldn’t need a correction and I wouldn’t have to think of insulin already in my system, which to me resembles,
“If Train A left the station in Littletown, Arkansas at 8am heading west at 80mph, and Train B left the station in Smallcity Kansas at 10pm heading north at 769mph, where is Train C in the year 2045?
I think that even though I am second guessing every little thing, I am using my experience to fill in the gaps, like timing my shot and when I should eat. So, clumsy me preps my first shot meant for myself. This takes a little finesse. I’m completely comfortable around needles, but that doesn’t mean I’m good with them. Shot goes in the thigh. Pinch and sting, then ow, ow…ow. Not really pleasant, and a bit sore.
My “Lantus” will be my second shot. Somehow, I feel clumsier than with the first shot. Holding the vial and the syringe and drawing the saline is not a fluid process for me. It’s why I drop pens all the time. All…the…time. Nothing dropped! Shot goes in the stomach. Don’t even feel it. I am happy because I had no sting and no soreness, AND the needle didn’t end up in my eye. An actual possibility for me.
Nighttime blood glucose check (BG) hurt worse than the shots. Couldn’t get blood and then did another fingerstick and blood everywhere. I don’t have my Dad’s fingertips of steel. Typing “w” and “s” is the worst. Ow. I am at 83. I feel somewhat successful even though I did nothing to achieve this BG after an all-natural probiotic frozen yogurt treat for dinner. If I had type 1, I would not feel comfortable going to sleep with this BG. I don’t want to eat anything. My all-natural probiotic frozen yogurt treat really filled me up.
Week of Shots
Luckily, JDRF has a new Adult Type 1 Toolkit (shameless plug!). There is information for diabetes in the workplace. Gotta tell my boss that I have fakeabetes. I think JDRF is one of the most perfect places to work for someone with diabetes. It’s understood. Fakeabetes, uh, not so much.
“I can’t believe you’re taking on another thing,” she said.
She’s right, as I’m managing a lot. I explained to her my reasons for doing it, and she understood and told me to keep her posted on how it goes. My director and colleagues are completely supportive, and I know in the coming days my coworkers and friends with diabetes are going to probably get a bit of a laugh of out me as I attempt to manage fakeabetes.
Already, I’m not liking it. I didn’t expect to like it, but the time commitment is already becoming a pain, and all the little considerations that go along with it don’t mesh with a crazy busy life at work. I knew I needed a break, so I had planned a trip to visit my parents for the weekend. Fakeabetes was coming with me.
I was at security when I realized I had left War and Peace at the ticketing counter. Argh! That’s hard to do, too, because that book is like 10 lbs, and I should have noticed that my arm felt lighter right away. I was on the plane when I realized my saline was back at home in the fridge. AAARRRGGGHHHH!! My heart stopped. Saline is my “insulin.”
Greet parents, and tell them I need to try to find saline. Ha. Hahaha. If you know where this is going, feel free to read on so you can laugh at me. First pharmacy doesn’t have saline vials. Go to Walgreens. First pharmacist doesn’t know what I’m talking about, pulls in second pharmacist. So I begin every request with, “Ha, okay, this is a long story…” Second pharmacist says, “This is going to sound really stupid, but you need a prescription for it, and it has to be special ordered unless some pharmacy has it already in stock.” I feel like I have bothered my CDE enough with the initial time she spent with me on this project, but I am willing to make that call if I can find a pharmacy that already has it in stock, and my parents are hungry, so I am running out of time. Call after call, lead after lead, and I am told by a hospital to try urgent care (seriously, this was after explaining the situation). I actually call urgent care, and after being handed off a couple of times (this is an unusual urgent request, I would think), I tell my story to a sweet guy who finds a number of a pharmacy for me. My parents are ordering food at this point. I call the pharmacy, and it is a fax line. My mother makes the observation that it would probably be easier to get heroine or meth than saline.
I give up. I’m going to have to tea party it for the weekend, and no, I don’t mean take a far right conservative stance on managing fakeabetes, but pretending to draw saline as if I was holding the vial, like a little girl drinking imaginary tea. This actually works, even though I feel like an idiot. By the time I’m done checking my blood sugar, writing it down, “prepping” the shot and going to the bathroom to give it (Mom said not at the table, pffft), my parents are already half way done with their food.
I don’t have high BGs to use my ISF, but Dad does. Having type 2 for over the past 20 years, Dad is too familiar with highs. So, I ask Dad to check his BG every time I do, so I can use his numbers. Considering that Dad went from checking on average 2-3 times a day to over 7 times a day, I’ve given him another reason to fret my visits. As a nagging daughter, I’ve laid off the diabetes cop role and he the epilepsy cop role for the past few years, but I’m still nosy about his management. It was actually fun to check our sugars together, except when I told him to down water for a high, and then we couldn’t get him to a bathroom quickly, so he was very uncomfortable as we tried to park. I felt bad about that one. Sorry Daddy.
Every time we sat for a meal, Mom would preface for those at the table, “You know what she’s doing?” And then she would follow with, “I can’t believe kids have to do this every day.” It’s a lot to imagine a small child or teen dealing with this, but at 26 I’m not enjoying it very much, gotta say. I don’t know if being older makes a person better equipped to take it on. I am fairly set in my daily ways and like the flexibility to change my daily habits when I please. I loved my life without fakeabetes, just like I loved my life before epilepsy. Nothing hanging over you to take care of first.
My first week of injections could have left me really ill or put me in the hospital if the saline had been insulin. I saline stacked twice, and giving myself a shot, I went through the process of prepping it, and didn’t realize until after I injected that I had given myself 30 units. My eyes bulged out of my head and my heart stopped. The syringe was still in my hand and I was frozen. I remember that feeling well, because I get the exact one when I forget my pills. Crap! I learned from these experiences that even if managing diabetes becomes more routine, it still takes your complete focus. It demands it. You have to stop everything your doing and focus on the task at hand. This is really difficult for a multitasker like me.
In a week, BG checks were a lot easier (I was gettin’ good at it), and shots were easier and a little bit quicker. Still didn’t make me a fan, though. I was ready to stop the shots.
Our Medtronic Diabetes Clinical Manager, Alison, worked to set up a time to put me on a pump trial. She recommended a Barnes & Noble, which was kismet because I needed to replace my copy of War and Peace.
She went through all the steps with me. This was too easy, I thought. It’s an easy to use device, I knew, but it actually is easier for me, because I knew I would get to play with it, without measuring the consequences of every change in delivery and make more changes. And then adjust, and then measure, and then possibly make more adjustments. I was on the Mini Med Paradigm REAL-Time Revel 523 and using Mio infusion sets. Connecting to the pump was painless, and I didn’t even feel it at all. I just looked at her blankly for the next step to put it in. After I was ready to go, we sat and talked about research and technology and our jobs, so once again, I take full responsibility for that.
My first bolus came with dinner, and I was so excited. It was so easy and accurate and took so much less time than the shots. All this I knew, but never experienced, so I was on cloud nine. So, after I bolused, and wanted to sit and relax and eat, I looked at the pump. It was going to be with me for dinner. I looked at it, as if to say, “Thank you for your medical magic, but I am so over you now.” I don’t like having something connected to me. I got thrills bolusing and playing with it, but then wanted it off immediately. Slowly, during the course of my four day trial, it felt a bit more normal having it on. I still wanted to take more showers just to disconnect from it. I was very proud of myself doing my first site change, but then thought, “Ah dammit, it’s back on me again.” That 3 minutes of heaven is over.
Knowing lots of people on shots and their reasons and lots of people on pumps and their reasons, I’m starting to understand the emotions behind them. I hated having to take shots, the time it took, and all the saline stacking and miscalculations I made. You can’t deliver the an exact amount of insulin with shots. Pumps do seem like magic after that. It does all the thinking for me, I can deliver “insulin” over time as my food would would demand and it accounts for “insulin” already in my system, which I didn’t even do on a remedial level. It’s safer and more accurate, and if I want to snack on the way home from the grocery store, I can bolus in the store! But, with shots, I take a shot, done. I’m disconnected. It seems like the difference of what you want to do and should do, and every decision I have made so far, has been a battle between the two. What is difficult, is finding out what you should do and when you should do it, something I don’t have to face without the actual disease.
After one week, 2 days with fakeabetes, I was getting really sick of it. I started thinking about the day when I would be done. The thought made me happy. I also was having nightmares. I would dream that I forgot to check my BG and something wrong was happening. The first few seconds after I would wake up, I thought I had diabetes, and first thought was to check my blood sugar. Then reality would flood back in. I have fakeabetes.
The pump made me question my decisions. For instance, I found a new popcorn at Whole Foods. Popcorn is very addicting for me, and even though I thoroughly read nutrition labels, (especially the ingredients list) and I eat really healthy, I never carb counted until now. So, looking at the carb count on popcorn, I could actually imagine money being pumped out of me. Insulin is money, and even though I was attached to saline, I put the popcorn back.
I was becoming used to the pump by day 3 and on the morning of the 5th day, I returned it. I can imagine that if I was getting used to it in just that amount of time, that after weeks of wear, it would have felt close to normal. Ironically, it was kind of hard knowing that I had to give it back. I became somewhat attached, especially because I still had fakeabetes. I had even named it! I named her “Pump.”
Had to take another shot in the meantime, and it hurt, too! It stung, as if my body was saying, “We don’t do this anymore, I hate you!”
Only had to supplement with one shot until…
Denise came into my office to put me on the Ping. With her calm voice and slow instructive movements, I felt as if I was watching a professional tutorial, so I was really quiet and listened. My infusion set was the inset, so the same procedure as my first. I went through the menu options with Denise and we played with the remote. She took the pump across the hall and I administered a bolus. So cool! I can definitely see how remote bolusing is a great feature for parents of small children, but even me…the Ping clips really tight to my pants, so it is easier for me to check BGs and bolus with the remote than trying to unhook the pump (okay, I just outed myself on laziness on that one).
After visiting our office, I was able to show Denise a bit more of what we do and we talked about programs and education, and I take full responsibility for that.
It was so great to be back on a pump even after just that one shot.
Coming into JDRF in 2006, I immediately began advocating for CGM. JDRF funded trials to prove efficacy of the devices and then made those trials visible. JDRF advocated for wider coverage of the devices, making them more available to patients today than just a few years ago. Now, as JDRF has invested in the artificial pancreas and we are strongly advocating to bring a closed-loop system to homes in the very near future, I was so excited to try CGM myself. I know a lot of people on CGM, and I have heard the cons and I have heard the benefits, and now I get to put one on, or er…in….or rather in and on….?
Sierra came into my office. We both knew that CGM is meant for people with diabetes, to provide safety and a wealth of applicable knowledge. For me, I thought I would learn how to use the device, but that I would flat line, meaning I wouldn’t get alarms that I was too high or too low, and I wouldn’t be making proactive decisions from it.
I was practically jumping up and down, it is soooo COOL! I felt shaky before dinner, and I checked my BG and it was 59…weird. Later, I had my first callibration and watched my CGM. I wanted to watch my CGM constantly. I was fascinated by it. It was 20 points higher than my BG before bedtime, but I knew it wouldn’t be exact, and I had a fresh new sensor so…
I didn’t sleep at all the first night. When setting my alarms with Sierra, she was surprised I wanted any alarms. Sure, I said! I do run low, so I thought 70 would be a good low threshold, and 120 my high. Omigod, it alarmed constantly. I did hear the vibrations, but the alarm was loud. So, when I actually did sleep, it was not good, because as you can imagine, having a new device slightly imbedded your body and it screaming at you does not for sweet dreams make.
It was alarming me that I was in the 50s. Impossible, and now I was angry, so I got up and checked my BG at 1am. I was a little shaky, but I was half-asleep! I was in the low 60s. Huh. I never would have thought that. The screaming receiver that I despised for its sleep-interrupting lies just seconds ago, I now had a deep appreciation for. My body protects me when my BG levels are low, but if I had diabetes, that alarm could easily have saved me. And I was up and in the kitchen and not asleep completely unaware.
When I had to wake up because morning had come I was exhausted. Also, I knew that night-time diabetes management and epilepsy do not mesh, but I really felt that weight and anxiety on me. Interrupted sleep and sleep deprivation is a common trigger for seizures. I forgot what day it was, but I knew that my BGs were climbing back into the 60s as the morning continued.
CGM started to become my friend. It wasn’t on point, but the trends were correct. One night it alarmed me that I was 120 and rising. Hmmm…I’ll just check. After a fingerstick it said I was 160! I had to use an exclamation point, because I never had a BG reading that high…but I was also never prompted to check. After 20 days with fakeabetes, I’ve been accused of now having hysterical diabetes. I also had a new attachment to CGM, not wanting to give it back. I can only imagine the attachment that happens between someone with diabetes and this tool once they have had all this information pouring from them, whether its exact 100% of the time or not.
Cutting the Cord – Omnipod
I must confess, with the pumps and meters, I have over and over again listened (well, eavesdropped) on how it works, their respective features, the steps to take, etc. But all that information flew out of my brain because I wasn’t placing it on my body and pushing buttons. I remembered most of the information, to my credit, but I really had to treat everything as it was new.
Sitting with Dino from Omnipod as he explained, I noticed that this was one of the first times I kept my mouth shut. Even though each step was incredibly easy, he really took his time and explaining how it worked, and I again appreciated it. After highly favoring my stomach for the past week, I went for the arm, so there the pod went. Filled with saline, I felt a slight flick on the back of my arm and looked at him questioningly. Good to go. By the time we were talking of the basic features, I was already playing with the PDM. Once he felt comfortable with my basic knowledge, I began talking about work, marketing and medical devices with his colleagues. I take full responsibility for that.
I really thought it would bother me, to be honest. I thought it would feel like well, a small pod was attached to my arm. I could only feel it when I thought about it and touched it, or heard a “thunk” as I would cut corners and it would hit the doorway. That’s just a clumsy alarm feature that comes with all pumps. I got tangled in the seat belt with a tubed pump, so that was the alarm for that one.
I had good fortune with the medical device trials. No kinking or malfunctions. The one I would choose? Ha, I’ll never tell. I shouldn’t tell, because fakeabetes is really easily managed in comparison. There is no comparison. The medical devices chosen by those living with diabetes should be chosen because that is the best option to go toe-to-toe against what their diabetes is trying to do to the body.
The 18 days with fakeabetes did create another level of awareness. I didn’t expect to enjoy it thoroughly, but I did expect to enjoy the learning! I learned on a deeper level that diabetes is a total pain, filled with little pains and confusion. I could only suppose as much before, but I really hated fakeabetes. I really liked seeing the technology and watching it work, but it was no comparison to not having to have it.
Flashback to the car ride back to the JDRF office after my first Kids Walk to Cure Diabetes assembly with my then boss, now colleague and one on my best friends. She has had diabetes since she was a small child, and I had just started working with JDRF. The students were beyond enthusiastic about finding a cure. They screamed and applauded. My friend contemplated what a world without diabetes would mean for her. It has been with her since childhood and her career is focused on defeating it once for all. All the care she takes in managing her diabetes, she thought, what would she do with her time? It is a lot of time to get back, not having to deal with this.
When I took off the last of my devices, I felt like a dog just released from a bath. I wanted to dance and run around rapidly in circles. I was very happy and felt free. After just 18 days, I got to shake it off.
My friend and coworker down the hall is feeling awful today because her diabetes is throwing her new punches. My friend across town is battling high blood sugars she can’t identify the source of. They can’t give their diabetes back, like I did. They can manage it, cherish times when they have it under their thumb, but they can’t give it back. Not yet.
I’m not naive. I don’t think a cure will appear and be readily available tomorrow or next week. I know it will be a long and persistent fight. A fight to fund cure therapies, a fight to educate, a fight to create awareness. But for that day when they can give it back, it is most certainly a fight worth waging.
Michelle Magorno and Pediatric Endocrinology of Phoenix
Alison LaCombe, Medtronic Diabetes
Denise Griswold, Animas Corporation
Sierra Cristiano, Dexcom
Dino Pierce and Alice Kraft, Insulet Corporation