Who knew that there was an administrative side to having diabetes. Most people know about the obvious management it takes- finger pokes, testing, juice boxes, etc., but what about the other stuff?
Like when you are running late and trying to get out the door and right then, your pod alarms (I have an Omnipod) and you have to put on a whole new pod before you can go. Which reminds you that you are almost out of pods and you haven't received a new shipment- where are they? You make a mental note to call Omnipod/Insulet Corp later to check the status.
It's as if managing T1 everyday isn't quite enough- you have to battle your insurance company every so often when they randomly decide you are using too many test strips per month and therefore deny your prescription, or they suddenly change the brand you use to the non-formulary list and hike your copay up another 20%.
It's realizing you don't have anymore tape as your CGM or your pod is falling off/coming loose.
There's always stuff to stay on top of, it's always time to re-order something. That's why I need a diabetes secretary. That way I can have some normal down time in my day. And sometimes, I just want to feel nondiabetic for just 5 minutes. Because it wasn't that long ago that I was, and I still remember what "normal" feels like. I miss it.
Side note- I've recently identified that I talk more to myself now that I have diabetes. Is this normal????? I say things like "Are you kidding me???" "You are NOT going to do this now, are you?" "Ohhhh, can't you just leave me alone for a little bit???" Sadly, I find that I tend to do it outloud, even in grocery aisles, only to look up and see people looking at me, wondering who I'm talking to.
I need a bubble bath. Calgonnnnnnnnnnnn!
Saturday, February 12, 2011
Happy 1 Year Anniversary, T1 Diabetes.
One year ago on February 6, 2010, I was diagnosed with Type 1 diabetes. It was a Saturday, a normal one, and the day before the Super Bowl. I had plans that weekend. In fact, I was sitting at Starbucks on the phone with my sister, telling her that I didn’t feel well and was going to go get “checked out” at the urgent care clinic before going out with my friends later that evening.
I never made it to the date with my friends.
I am still reeling from how much my life changed one year ago. I've had friends ask me why I'd want to acknowledge or celebrate that day. One even asked "how is that day really any different than any day?" My answer: because that day marks the end of my old life, my “normal” life. Living stress free. It marks the day when I no longer got to take for granted being healthy every day, effortlessly.
It marked the day that going forward, I would never not have a medical diagnosis attached to my name when I went to any doctor visit.
The day fear set in as well as the reality of mortality.
And the day that there were no more birthdays or holidays where I could say “this time, last year, I didn’t have diabetes.”
It marked the day that I’d had D for one year, and I realized it was time to stop measuring time in “before D”/ “after D.”
The new-ness of the disease wore off for me and everyone else.
Being newly diagnosed with D reminded me somewhat of what happens after a funeral. Just like when someone unexpectedly dies, with the new diagnosis, everyone around you is shocked, sad for you, supportive and rallies around you. Everyone offers their 24/7 help. “Call me if you need anything.” There’s food being brought to your house. There are lots of questions like “how did you get it?” “What were your symptoms?” “How did you know you had it?” People are secretly questioning their own mortality, too, off of your new diagnosis.
But as time rolls on, the calls slow. The casseroles are no longer being delivered to your house. The offers of 24/7 help seem to fall by the wayside. Everyone else has moved on with their lives. As the last flower bouquet eventually dies, you are left to mourn alone. When everyone else has forgotten about it, you still have to manage the disease. Daily. Hourly.
The first year, I witnessed people and friends tire of hearing about my daily struggles with managing big D. I even had one friend ask if I needed to mention D every day, as if having D wasn’t as big of a deal as I was making it. I almost felt as if he were telling me to “let it go.”
Learning diabetes was like taking a super crash course in a foreign language. Health providers would whip out terms to me like I was a seasoned veteran. To me, it might as well have been in Chinese. I had no idea what a “bolus” was, and later didn’t understand the difference between a bolus and a basal rate. And what the hell is “ background insulin?” What constituted a fast-acting insulin versus a slow-acting one? Can I really only have 30 carbs at breakfast and 45 at lunch and dinner? (I had been given a Type 2 workbook in the hospital). The nurses in the hospital took my bg regularly and would tell me my bg had gone from 300 to 185. Was that a good number? Where’s it supposed to be at?
While in the hospital, day 2 of my diagnosis, the rounding endocrinologist finally convinced me that the diagnosis wasn’t a mistake, as I had hoped. That I, in fact, did have diabetes. I had a complete meltdown. I darn near begged the doctor to allow me some time (a week?) to go home and digest all this before I had to start taking care of it (the answer was no). I walked from my hospital bed to my bathroom shower and I turned the water on. I cried so hard in that shower that my whole body convulsed. I leaned my back against the corner and slowly slid down until I was sitting on the floor. I hoped the water was drowning out the sounds of my sobbing so the nurses wouldn’t come in. I felt more alone and isolated in that moment than I have ever felt. The reality of the situation and the fear overwhelmed me all at once. I wondered how a 5’6”, 112 lb. woman with a healthy lifestyle and no family history could get diabetes (I didn’t fully understand the difference between Type 1 and 2).
I left the hospital a couple days later with 500 new prescriptions and the hope that the medical insurance I had never really used was good.
The first year of diabetes involved changing glucose meters a couple times until I found one I liked, (realizing they require different amounts of blood), literally figuring out and trying to remember which end of the test strip went in the meter (the stripes end, not the dots!), and getting an Omnipod insulin pump a week after diagnosis. It was realizing I didn’t have to use gloves or alcohol wipes each time I pricked my finger (like the nurses did).
A year later, I’m still trying to figure out how certain things affect my blood sugar: foods, illness, stress, exercise.
I’ve, to this day, never given myself a shot of insulin (too afraid of the needles). I know I know, I need to get over it and learn, in case my pump fails. I’m working on it. You can hold your tongue.
I’ve learned to put my diabetes care at the forefront of my life, and to not be embarrassed or ashamed that I have to do things in front of other people. I used to feel bad when I thought I was making others uncomfortable because I was adjusting my pump or checking my bg in front of them. I decided I wasn’t going to get up and leave every time I needed to do it. And I realized that for the most part, people won’t make a big deal out of it unless you do. I decided to put my needs first. My saying became “After me, you come first!”
I also learned that acquiring as much info on T1 was important on a couple different levels. It educated me, first and foremost, which has allowed me to take better care of myself and to educate others. But it also gave me a sense of control over my illness. I found a great CDE and endo. I subscribed to Diabetes Forecast. I signed up for the local JDRF walk. I joined the ADA, the JDRF Advocates, DOCs and read T1 diabetes blogs. I watched documentaries. Bought a happy lamp. I went to 2 hospital dieticians, followed by a holistic one, and another one at the wellness department at my insurance company. I visited two therapists and realized it wasn’t for me- I wanted to figure out how to manage this emotionally without a therapist or medication. I read more books (about diabetes) in the last year than I’ve read in the last 5 years combined. I tried every hokey diet that promised to cure me and reverse my diabetes. I went back to church weekly and prayed HARD. I read positive thinking books and did a “vision board.” And although I still have diabetes (nope, none of these things cured me), they all helped me in some way. You do what you gotta do to feel empowered.
I still have a lot to learn, especially with learning how to deal with the emotions that having D brings. And dealing with how it affects those around me. And maybe learning to not feel responsible for other people’s feelings.
I am open to anyone’s advice and suggestions, because I’m still a diabetes pup.
I never made it to the date with my friends.
I am still reeling from how much my life changed one year ago. I've had friends ask me why I'd want to acknowledge or celebrate that day. One even asked "how is that day really any different than any day?" My answer: because that day marks the end of my old life, my “normal” life. Living stress free. It marks the day when I no longer got to take for granted being healthy every day, effortlessly.
It marked the day that going forward, I would never not have a medical diagnosis attached to my name when I went to any doctor visit.
The day fear set in as well as the reality of mortality.
And the day that there were no more birthdays or holidays where I could say “this time, last year, I didn’t have diabetes.”
It marked the day that I’d had D for one year, and I realized it was time to stop measuring time in “before D”/ “after D.”
The new-ness of the disease wore off for me and everyone else.
Being newly diagnosed with D reminded me somewhat of what happens after a funeral. Just like when someone unexpectedly dies, with the new diagnosis, everyone around you is shocked, sad for you, supportive and rallies around you. Everyone offers their 24/7 help. “Call me if you need anything.” There’s food being brought to your house. There are lots of questions like “how did you get it?” “What were your symptoms?” “How did you know you had it?” People are secretly questioning their own mortality, too, off of your new diagnosis.
But as time rolls on, the calls slow. The casseroles are no longer being delivered to your house. The offers of 24/7 help seem to fall by the wayside. Everyone else has moved on with their lives. As the last flower bouquet eventually dies, you are left to mourn alone. When everyone else has forgotten about it, you still have to manage the disease. Daily. Hourly.
The first year, I witnessed people and friends tire of hearing about my daily struggles with managing big D. I even had one friend ask if I needed to mention D every day, as if having D wasn’t as big of a deal as I was making it. I almost felt as if he were telling me to “let it go.”
Learning diabetes was like taking a super crash course in a foreign language. Health providers would whip out terms to me like I was a seasoned veteran. To me, it might as well have been in Chinese. I had no idea what a “bolus” was, and later didn’t understand the difference between a bolus and a basal rate. And what the hell is “ background insulin?” What constituted a fast-acting insulin versus a slow-acting one? Can I really only have 30 carbs at breakfast and 45 at lunch and dinner? (I had been given a Type 2 workbook in the hospital). The nurses in the hospital took my bg regularly and would tell me my bg had gone from 300 to 185. Was that a good number? Where’s it supposed to be at?
While in the hospital, day 2 of my diagnosis, the rounding endocrinologist finally convinced me that the diagnosis wasn’t a mistake, as I had hoped. That I, in fact, did have diabetes. I had a complete meltdown. I darn near begged the doctor to allow me some time (a week?) to go home and digest all this before I had to start taking care of it (the answer was no). I walked from my hospital bed to my bathroom shower and I turned the water on. I cried so hard in that shower that my whole body convulsed. I leaned my back against the corner and slowly slid down until I was sitting on the floor. I hoped the water was drowning out the sounds of my sobbing so the nurses wouldn’t come in. I felt more alone and isolated in that moment than I have ever felt. The reality of the situation and the fear overwhelmed me all at once. I wondered how a 5’6”, 112 lb. woman with a healthy lifestyle and no family history could get diabetes (I didn’t fully understand the difference between Type 1 and 2).
I left the hospital a couple days later with 500 new prescriptions and the hope that the medical insurance I had never really used was good.
The first year of diabetes involved changing glucose meters a couple times until I found one I liked, (realizing they require different amounts of blood), literally figuring out and trying to remember which end of the test strip went in the meter (the stripes end, not the dots!), and getting an Omnipod insulin pump a week after diagnosis. It was realizing I didn’t have to use gloves or alcohol wipes each time I pricked my finger (like the nurses did).
A year later, I’m still trying to figure out how certain things affect my blood sugar: foods, illness, stress, exercise.
I’ve, to this day, never given myself a shot of insulin (too afraid of the needles). I know I know, I need to get over it and learn, in case my pump fails. I’m working on it. You can hold your tongue.
I’ve learned to put my diabetes care at the forefront of my life, and to not be embarrassed or ashamed that I have to do things in front of other people. I used to feel bad when I thought I was making others uncomfortable because I was adjusting my pump or checking my bg in front of them. I decided I wasn’t going to get up and leave every time I needed to do it. And I realized that for the most part, people won’t make a big deal out of it unless you do. I decided to put my needs first. My saying became “After me, you come first!”
I also learned that acquiring as much info on T1 was important on a couple different levels. It educated me, first and foremost, which has allowed me to take better care of myself and to educate others. But it also gave me a sense of control over my illness. I found a great CDE and endo. I subscribed to Diabetes Forecast. I signed up for the local JDRF walk. I joined the ADA, the JDRF Advocates, DOCs and read T1 diabetes blogs. I watched documentaries. Bought a happy lamp. I went to 2 hospital dieticians, followed by a holistic one, and another one at the wellness department at my insurance company. I visited two therapists and realized it wasn’t for me- I wanted to figure out how to manage this emotionally without a therapist or medication. I read more books (about diabetes) in the last year than I’ve read in the last 5 years combined. I tried every hokey diet that promised to cure me and reverse my diabetes. I went back to church weekly and prayed HARD. I read positive thinking books and did a “vision board.” And although I still have diabetes (nope, none of these things cured me), they all helped me in some way. You do what you gotta do to feel empowered.
I still have a lot to learn, especially with learning how to deal with the emotions that having D brings. And dealing with how it affects those around me. And maybe learning to not feel responsible for other people’s feelings.
I am open to anyone’s advice and suggestions, because I’m still a diabetes pup.
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