Why I Started This Blog
Where were you 20 years ago? I was sitting on a cold
blue chair in the Children's Hospital Lab waiting for
the funniest, tall, black man with glasses to make my
first poke, on my journey of pokes, seemingly painless.
(If you know him let him know I still remember this
night like it was yesterday). It was a night that would
change my life forever.
Over 20 years there have been the good, the bad and the ugly days. If you knew me as a toddler you know that I could throw a mean temper tantrum now imagine you've been diagnosed with a chronic illness that not a single person in your family has. Let's just say my parents are incredible humans. They were and still are an amazing support system and I firmly believe one of the reasons I am "such a good diabetic" is because they taught me the ropes and pushed me to stay on track. Ask them how easy those conversations were especially in high school.... I still have vivid memories of the noise the vials (NPH/ Humalog) made against my dad's wedding band while he rolled them between his hands every morning as I ate breakfast. I also remember shopping for all things sugar free after I was first diagnosed with my mom and my aunt. They were always there.
Oh how things have changed. I went from shots on shot on shots and pokes on pokes on pokes to great technology followed by less pokes. I have been on an insulin pump for 17 years now. I was one of the 1st kids to go on the pump. They wouldn't let me start on one until 10 years old because the system came up with an arbitrary number for kids being "old enough" and "responsible enough" to hold this technology as their own. If you knew me as a 9 year old, you know why my mom faught like mad to get me that pump before my 10th birthday.
Then it happened. I was attached to a tube for the next 17 years. And life as a diabetic was "easier." But let me ask you something. As a teenager getting ready for your first homecoming dance did you have to think twice about finding a place for your "portable pancreas?" (This term was coined by my dear friend KJ during club vball as an 8th grader) So while yes diabetes got "easier" it sure came with some other obstacles. I always felt like I was different. I had a hard time being ok with my body image. Think back to those teenage years when you already are struggling with body image and throw in a chronic illness that people DO notice on the outside, tell me how you help someone through that? Well my English teacher did something that empowered me. She wanted me to publish my article describing life with diabetes. So yes, I'm a published author. Yes, I've battled with depression. Yes, I've been questioned by the FBI. (A story for another time with one of my other chronic conditions) All before I graduated high school.
Now let's take this disease on the road. All the way to Pittsburgh, PA. Nursing school. I wanted to be the NP in diabetics lives that looked at them as people not a disease and help them through those hard times. I wanted to be just like my NP from HS who saved my life. She noticed something inside me that didn't seem right for HS girl. Anyways, when you send your kid off to college they become a little more independent. How do you sleep at night when they also have a chronic disease that is incredibly dangerous to add to alcohol, drugs and pregnancy? Well I'm sure you pray, A LOT.
College was interesting to say the least. My A1C got better despite being "on my own." I think it honestly was because my parents had made sure I knew how to take care of MY disease and made sure that I took ownership for it. Despite the yucky nature of the disease they instilled in me the facts that this disease was manageable and livable. It wasn't a death sentence unless I chose to make it one. But it did have to be at the center of a lot of my decisions. There were hurdles to be had but they supported me through each and every one of them.
The past 2 years have brought about MANY changes. 1st was having a baby. Having the baby is no small mountain to climb but I will not discredit the hours I spent managing my disease while growing him inside me. It was a challenge. It was hard. The lack of knowledge around type 1 diabetic mommas in the OB world was astounding. The words people feel is appropriate to say to these type 1 diabetic mommas is incredible. I had to learn a new level of patience while being extremely hormonal and emotional. But I remembered that each and every comment gave me a chance to EDUCATE. One of my passions.
Now the number 42 holds a new level of endearment in my heart. That was my blood sugar when my baby was born. I felt off. Despite the spinal medications I had on board, despite the fact that I was on an operating table trying to puke without any abdominal muscles, despite the fact that i was being cut open and having a baby for the first time, i felt off. The anesthesiologist asked if he should get my blood sugar? I said absolutely. 42 they said. It was 2202 my son was taking his first breaths. They wanted to know if I wanted them to give me sugar through the IV. YES. Now I will say in the OB world you as a diabetic you hold the power. They let you keep that sense of control for as long as they can. So I appreciated the control while I had lost all other forms of it.
With the turn of the year, I went TUBELESS! After 17 years of having something connected to you 24/7 it sure felt different. I wasn't tethered anymore. I could go to sleep and not think twice about where my pump was because it was just sitting there, against my skin. I could go to the bathroom and not worry about putting the tubing away before heading out of the bathroom. I have fallen in LOVE with this sense of freedom. And now for the first time I can go DAYS without testing my blood sugar. Now before you get any crazy ideas....I get a sugar sent to my phone every few minutes from my new sensor. I wear it in my arm because that's where it works for me. It gives me a sense of freedom but in reality it just keeps me more attached to this blessing of a disease. Because in reality I "check" my blood sugar far more often than I ever have in my life. Constantly wondering where it's headed and what the food I just ate will do to it.
Diabetes has been a blessing in an awful disguise for me. I've become who I am because of this disease. This disease has caused me to fight like mad to overcome some of my greatest obstacles. It has been my greatest mountain to climb but it has been the best journey to endure. I have more battles ahead. Insulin is essential to live and yet people have put a price on my life. I guess time will tell how the years to come pan out. Thank you for reading this post to the end. Thank you for those who have been a part of this amazing journey. Here's to another 20 years and a cure!
Over 20 years there have been the good, the bad and the ugly days. If you knew me as a toddler you know that I could throw a mean temper tantrum now imagine you've been diagnosed with a chronic illness that not a single person in your family has. Let's just say my parents are incredible humans. They were and still are an amazing support system and I firmly believe one of the reasons I am "such a good diabetic" is because they taught me the ropes and pushed me to stay on track. Ask them how easy those conversations were especially in high school.... I still have vivid memories of the noise the vials (NPH/ Humalog) made against my dad's wedding band while he rolled them between his hands every morning as I ate breakfast. I also remember shopping for all things sugar free after I was first diagnosed with my mom and my aunt. They were always there.
Oh how things have changed. I went from shots on shot on shots and pokes on pokes on pokes to great technology followed by less pokes. I have been on an insulin pump for 17 years now. I was one of the 1st kids to go on the pump. They wouldn't let me start on one until 10 years old because the system came up with an arbitrary number for kids being "old enough" and "responsible enough" to hold this technology as their own. If you knew me as a 9 year old, you know why my mom faught like mad to get me that pump before my 10th birthday.
Then it happened. I was attached to a tube for the next 17 years. And life as a diabetic was "easier." But let me ask you something. As a teenager getting ready for your first homecoming dance did you have to think twice about finding a place for your "portable pancreas?" (This term was coined by my dear friend KJ during club vball as an 8th grader) So while yes diabetes got "easier" it sure came with some other obstacles. I always felt like I was different. I had a hard time being ok with my body image. Think back to those teenage years when you already are struggling with body image and throw in a chronic illness that people DO notice on the outside, tell me how you help someone through that? Well my English teacher did something that empowered me. She wanted me to publish my article describing life with diabetes. So yes, I'm a published author. Yes, I've battled with depression. Yes, I've been questioned by the FBI. (A story for another time with one of my other chronic conditions) All before I graduated high school.
Now let's take this disease on the road. All the way to Pittsburgh, PA. Nursing school. I wanted to be the NP in diabetics lives that looked at them as people not a disease and help them through those hard times. I wanted to be just like my NP from HS who saved my life. She noticed something inside me that didn't seem right for HS girl. Anyways, when you send your kid off to college they become a little more independent. How do you sleep at night when they also have a chronic disease that is incredibly dangerous to add to alcohol, drugs and pregnancy? Well I'm sure you pray, A LOT.
College was interesting to say the least. My A1C got better despite being "on my own." I think it honestly was because my parents had made sure I knew how to take care of MY disease and made sure that I took ownership for it. Despite the yucky nature of the disease they instilled in me the facts that this disease was manageable and livable. It wasn't a death sentence unless I chose to make it one. But it did have to be at the center of a lot of my decisions. There were hurdles to be had but they supported me through each and every one of them.
The past 2 years have brought about MANY changes. 1st was having a baby. Having the baby is no small mountain to climb but I will not discredit the hours I spent managing my disease while growing him inside me. It was a challenge. It was hard. The lack of knowledge around type 1 diabetic mommas in the OB world was astounding. The words people feel is appropriate to say to these type 1 diabetic mommas is incredible. I had to learn a new level of patience while being extremely hormonal and emotional. But I remembered that each and every comment gave me a chance to EDUCATE. One of my passions.
Now the number 42 holds a new level of endearment in my heart. That was my blood sugar when my baby was born. I felt off. Despite the spinal medications I had on board, despite the fact that I was on an operating table trying to puke without any abdominal muscles, despite the fact that i was being cut open and having a baby for the first time, i felt off. The anesthesiologist asked if he should get my blood sugar? I said absolutely. 42 they said. It was 2202 my son was taking his first breaths. They wanted to know if I wanted them to give me sugar through the IV. YES. Now I will say in the OB world you as a diabetic you hold the power. They let you keep that sense of control for as long as they can. So I appreciated the control while I had lost all other forms of it.
With the turn of the year, I went TUBELESS! After 17 years of having something connected to you 24/7 it sure felt different. I wasn't tethered anymore. I could go to sleep and not think twice about where my pump was because it was just sitting there, against my skin. I could go to the bathroom and not worry about putting the tubing away before heading out of the bathroom. I have fallen in LOVE with this sense of freedom. And now for the first time I can go DAYS without testing my blood sugar. Now before you get any crazy ideas....I get a sugar sent to my phone every few minutes from my new sensor. I wear it in my arm because that's where it works for me. It gives me a sense of freedom but in reality it just keeps me more attached to this blessing of a disease. Because in reality I "check" my blood sugar far more often than I ever have in my life. Constantly wondering where it's headed and what the food I just ate will do to it.
Diabetes has been a blessing in an awful disguise for me. I've become who I am because of this disease. This disease has caused me to fight like mad to overcome some of my greatest obstacles. It has been my greatest mountain to climb but it has been the best journey to endure. I have more battles ahead. Insulin is essential to live and yet people have put a price on my life. I guess time will tell how the years to come pan out. Thank you for reading this post to the end. Thank you for those who have been a part of this amazing journey. Here's to another 20 years and a cure!
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