How interesting the last blog post was a good-bye letter to Mrs Osborn. This blog is about my anxiety regarding the upcoming school year.
We met the teacher and new nurse yesterday. She's certainly no Mrs. Osborn. I mean, seriously, there will never be another Mrs Osborn and Lord knows she left some pretty big shoes to fill.
Mrs. Hahler came flying into the meeting 100 MPH. Judging by the chicken scratch, the amount of talking and unorganized stack of papers she had ... that made a first impression on me I won't forget. I remember walking into a meeting full of staff members when we went through this before Kindergarten and within three minutes I felt so comfortable and knew Mrs Osborn was going to be an angel. She was cool, calm, collected and let me talk while jotting down notes.
Mrs. Hahler .... interrupted me every chance she could, didn't let the teacher have anything to say and just seemed ... I guess I don't even have words. But I left that 75 minute meeting frustrated as hell.
I was awake for two and a half hours in the middle of the night because I couldn't turn my brain off. I went through so many scenarios in my head (most of which will never happen, but hey ... at 2am your brain wants to go through it ALL).
Most definitely we are at square 1 this year. Something I sort of thought would happen, but now I know for certain. Ugh.
I woke up today knowing the poor teacher didn't really get to ask me anything nor did I get a chance to visit with her in regards to just every day routines with Trey, so I sent her a book ... I mean long email ... apologizing and yet just breaking down the day-to-day basics. It's my hope that this year Trey remains in his classrooms during the low blood sugars, instead of sitting down in the office missing valuable lesson time. Yes, the office will still be a safe place for him, however, I've made boxes for each room Trey will visit in hopes that he can just get a juice box and remain in class while the teacher calls the nurse to him. Will see how it works out.
As for the teacher, I have no issues or worries. Well, except for the fact there are 12 boys and 7 girls (POOR TEACHER) in the class. She is very good friends with Mrs Osborn so she's heard about Trey already and she also chatted with Mrs Salfrank about how we did things last year.
I just hope that Hahler calms down or something. I hate to write her off before dealing with her, but I just foresee a few weeks of some breakdowns for all of us.
Momma needs a drink.
Thursday, August 16, 2018
Tuesday, May 22, 2018
Dear Mrs. Osborn
Dear Mrs. Osborn;
I remember being told you were going to be my little boy's nurse, and the first thing I did was 'stalk' you on Facebook. I saw we had some mutual friends, so I asked them to tell me about you. Everyone, and I'm not exaggerating, said you were super sweet.
We met at the 504 meeting and I knew from the second I saw you, you were sweet. The way you looked at Trey and how you carried yourself, put me at ease. I will never be able to fully explain the anxiety I had to send my newly diagnosed T1 kid to Kindergarten. Terrified is an understatement. After speaking with you briefly, I knew Trey was going to be in great hands and I left that meeting feeling much more calm.
In the first couple days of school, we exchanged many text messages regarding Trey. Over the following weeks, I remember telling you "I trust you" and maybe to you that wasn't a big deal ... but for me it was a huge step. To this day, Heather, I trust you 100% with my son's life ... and I can assure you the number of people I trust 100% is VERY small.
In the last two years, you've been Trey's second mother (only much, much nicer than his first mom). You know the kid inside and out. You know what different carbs do to him, what carbs to avoid, how to dose for certain things and what he needs to come up or go down. You have gone above and beyond for not only him, but for me. You didn't need to text me daily to confirm snacks or give me his insulin dosage .. but you did. You didn't (and shouldn't!) have to let him play your phone during recess when he couldn't go outside due to blood sugar. You didn't have to stay at OMT late or arrive early because Trey's numbers were whacky. Jordan and I both told you, on more than one occasion, that you were too nice. Trey learned he could play you a little, but was quickly reminded of how good he had it when Mrs Wagner filled in. You weren't just his nurse - you were his best friend.
We joked with you after Bode was born, that you couldn't leave us and you had to promise to come back. We told Mr Ahlberg that he could never get rid of you, because we needed you. While I always knew there was a possibility that you would not be his school nurse, I can honestly say it never really carried much weight with me because Trey loved you ... we love you. But then the phone call happened ....
You don't know this, but after I hung up the phone with you, I collapsed on my kitchen floor and sobbed like someone had just died. It was me ... I felt like part of me died. It was like a bad dream and I didn't want to believe it to be true. I called Jordan and I couldn't even talk, I was crying so hard. Devastation is a good word to explain how I felt. The one person I trust with my kids life .. the one person who knows my kid like I do ... the one person my kid loved more than any other person at school ... was leaving. (Before I go on ... please know we hold nothing against you and understand this was not your choice)
So as I reflect back on the last two years, I am beyond grateful for all you did. I feel blessed that God sent his very best nurse to take care of my son, and to ease my mind/heart/fears. We are beyond lucky it was YOU, Heather. I tell everyone, and I mean it when I say it, you are truly an angel on earth. 100%. You helped Trey not only manage his diabetes, but you continued to teach him about it. You showed trust in him to learn to use his pump himself. You helped me learn to let go and hand the reigns over to someone else. It had to be you, the best of the best, to get us to the point we are at now and I hope you always know you will hold a very, very special piece of our hearts forever.
As we say good-bye to our favorite nurse, we learn to trust and love a new one. While I feel like I'm back at square 1, I know that's not true, as Trey has grown so much and knows so much already. God feels like it's time for us to handle a new challenge and perhaps that's what we need now. You're needed to change lives at SMS like you did at OMT ~ and perhaps this next step is what Trey needs to continue to grow more independent. It isn't going to be easy, but I know we can do it.
Thank you, from the bottom of my heart, and I truly wish you all the best as you move on in your career. There is a reason for it all. We love you ... and we always will.
Natalie Casanova
~ T1D Momma ~
I remember being told you were going to be my little boy's nurse, and the first thing I did was 'stalk' you on Facebook. I saw we had some mutual friends, so I asked them to tell me about you. Everyone, and I'm not exaggerating, said you were super sweet.
We met at the 504 meeting and I knew from the second I saw you, you were sweet. The way you looked at Trey and how you carried yourself, put me at ease. I will never be able to fully explain the anxiety I had to send my newly diagnosed T1 kid to Kindergarten. Terrified is an understatement. After speaking with you briefly, I knew Trey was going to be in great hands and I left that meeting feeling much more calm.
In the first couple days of school, we exchanged many text messages regarding Trey. Over the following weeks, I remember telling you "I trust you" and maybe to you that wasn't a big deal ... but for me it was a huge step. To this day, Heather, I trust you 100% with my son's life ... and I can assure you the number of people I trust 100% is VERY small.
In the last two years, you've been Trey's second mother (only much, much nicer than his first mom). You know the kid inside and out. You know what different carbs do to him, what carbs to avoid, how to dose for certain things and what he needs to come up or go down. You have gone above and beyond for not only him, but for me. You didn't need to text me daily to confirm snacks or give me his insulin dosage .. but you did. You didn't (and shouldn't!) have to let him play your phone during recess when he couldn't go outside due to blood sugar. You didn't have to stay at OMT late or arrive early because Trey's numbers were whacky. Jordan and I both told you, on more than one occasion, that you were too nice. Trey learned he could play you a little, but was quickly reminded of how good he had it when Mrs Wagner filled in. You weren't just his nurse - you were his best friend.
We joked with you after Bode was born, that you couldn't leave us and you had to promise to come back. We told Mr Ahlberg that he could never get rid of you, because we needed you. While I always knew there was a possibility that you would not be his school nurse, I can honestly say it never really carried much weight with me because Trey loved you ... we love you. But then the phone call happened ....
You don't know this, but after I hung up the phone with you, I collapsed on my kitchen floor and sobbed like someone had just died. It was me ... I felt like part of me died. It was like a bad dream and I didn't want to believe it to be true. I called Jordan and I couldn't even talk, I was crying so hard. Devastation is a good word to explain how I felt. The one person I trust with my kids life .. the one person who knows my kid like I do ... the one person my kid loved more than any other person at school ... was leaving. (Before I go on ... please know we hold nothing against you and understand this was not your choice)
So as I reflect back on the last two years, I am beyond grateful for all you did. I feel blessed that God sent his very best nurse to take care of my son, and to ease my mind/heart/fears. We are beyond lucky it was YOU, Heather. I tell everyone, and I mean it when I say it, you are truly an angel on earth. 100%. You helped Trey not only manage his diabetes, but you continued to teach him about it. You showed trust in him to learn to use his pump himself. You helped me learn to let go and hand the reigns over to someone else. It had to be you, the best of the best, to get us to the point we are at now and I hope you always know you will hold a very, very special piece of our hearts forever.
As we say good-bye to our favorite nurse, we learn to trust and love a new one. While I feel like I'm back at square 1, I know that's not true, as Trey has grown so much and knows so much already. God feels like it's time for us to handle a new challenge and perhaps that's what we need now. You're needed to change lives at SMS like you did at OMT ~ and perhaps this next step is what Trey needs to continue to grow more independent. It isn't going to be easy, but I know we can do it.
Thank you, from the bottom of my heart, and I truly wish you all the best as you move on in your career. There is a reason for it all. We love you ... and we always will.
Natalie Casanova
~ T1D Momma ~
Thursday, March 29, 2018
What's Normal?
It's such a fine line between normal and different.
As much as I remember being told Trey will lead a 'normal' life. I can't help but to think this isn't normal. It's different.
As much as we don't want Trey to be 'different', the truth is, that he is.
I was recently out of town and I dropped Trey off with my step-dad for a bit. I wanted Trey to have a snack before I left and Grandpa suggested an orange. "It's healthy". Yes, it is healthy, but it's not something Trey should really have for a snack without getting insulin for it. Is that normal for every person? No.
Trey was at 4x4 hockey on Sunday and had been on the ice for a long time. I could tell he was exhausted and needed a break, but do you think he would go to the bench to ask to sit? Hell no. Momma Bear went to the bench, called him over and told him to sit. His sugar was going up and he said, "I don't feel right. I'm sort of dizzy and I'm really tired." Normal?
Grocery shopping with Trey requires label checking. He sees something he wants, grabs it off the shelf, reads the carbs aloud, looks at me and either puts it in the cart or back on the shelf. Normal for a 7 year old?
Normal for a kid to know when he needs some protein to balance out his carbs in a snack/meal?
Being woke up in the night - sometimes more than once - to eat Skittles or drink a juicebox isn't normal.
Asking a child to poke his finger 9 times a day, to remember to take his kit with him everywhere he goes, to having to ask mom/dad for a snack before eating and always having to have a diet soda instead of fruit juice isn't normal. Unless you're T1.
But he plays hockey, he eats pizza and McDonalds, he goes to birthday parties and eats a cupcake/cake. Normal!
Truth is he isn't normal - this life we live isn't normal. It's different, and it's harder than hell. We put on a brave face and plow our way through every 24 hours and if you didn't know our situation, you'd assume everything is well. Truth is we don't get enough sleep; truth is we have diabetes on the brain 24/7/365. Truth is every food item I look at, a number is associated with it. (Example: I once saw a kid eat an applesauce pouch, a Slo-Poke candy, a Dilly Bar and a pack of fruit snacks all in the course of one hockey game. Want to know what popped into my head? 10, 35, 24, 20. In that order. Carb counts for everything that child ate.) It's not because I'm trying to - it's because for the last 2 years that's how I've had to look at food and it's just how my brain works now. Truth is T1 has put a strain on our family. Truth is, Jordan and I don't go anywhere or do anything with friends because the question looms "Who's going to watch Trey?" Truth is, it's also unfair to Delanie.
Look, I'm not trying to have everyone say "Poor Natalie". Read it how you want, but this life isn't for the weak. It's a daily struggle and hell, sometimes it's an hourly struggle. Jordan and I are in control of keeping our child alive and making the right decisions at the spur of the moment. Even his school nurse verifies with me different things. It's exhausting! But here we are - living the life we were handed. We don't know if we are doing it right, we don't know if we could be better, we are just doing the best we can.
There are still days I go through the grieving process. There are days I feel so totally defeated by this disease, I cry for hours. Some days we nail it and we smile and give high-fives. Some days I'm so pissed off about it, that I wonder what we did to deserve this battle. Sometimes I am thankful that it's not worse (such a touchy phase. Please don't ever, ever say this to a T1 family). We miss the easy life ... the life where Trey ate anything he wanted and we got to sleep 8 solid hours. The life where anyone could watch Trey for 3 hours so mom and go to Lagers. . The life where we didn't even know what a normal blood sugar was or how disgusting the smell of insulin is.
But it's not our life. Our life is complicated. It's not normal - it's different. So many people don't understand it; and truthfully until you live it you can't fully wrap your head around it either. But friends and even family just don't understand how much effort and thought it takes to make sure Trey is OK. From extra CGM and pump sites, to making sure there is the correct foods/drinks for him, to monitor his activity level, to having someone 'watch' him.
You can't just take Trey to an event without him having his kit, a snack and a bottle of water. You can't allow him to eat foods without having to give him insulin. If his sugar is high you don't feed him more carbs, therefore you must know the carb counts for foods and know he needs protein to go with it. Just because a food is healthy - it's not always safe for Trey's blood sugar. Banana??? No way. EVERY DETAIL OF OUR LIVES revolves around Trey. Everything. Normal??? Not for most, but I guess for us, it is.
As much as I remember being told Trey will lead a 'normal' life. I can't help but to think this isn't normal. It's different.
As much as we don't want Trey to be 'different', the truth is, that he is.
I was recently out of town and I dropped Trey off with my step-dad for a bit. I wanted Trey to have a snack before I left and Grandpa suggested an orange. "It's healthy". Yes, it is healthy, but it's not something Trey should really have for a snack without getting insulin for it. Is that normal for every person? No.
Trey was at 4x4 hockey on Sunday and had been on the ice for a long time. I could tell he was exhausted and needed a break, but do you think he would go to the bench to ask to sit? Hell no. Momma Bear went to the bench, called him over and told him to sit. His sugar was going up and he said, "I don't feel right. I'm sort of dizzy and I'm really tired." Normal?
Grocery shopping with Trey requires label checking. He sees something he wants, grabs it off the shelf, reads the carbs aloud, looks at me and either puts it in the cart or back on the shelf. Normal for a 7 year old?
Normal for a kid to know when he needs some protein to balance out his carbs in a snack/meal?
Being woke up in the night - sometimes more than once - to eat Skittles or drink a juicebox isn't normal.
Asking a child to poke his finger 9 times a day, to remember to take his kit with him everywhere he goes, to having to ask mom/dad for a snack before eating and always having to have a diet soda instead of fruit juice isn't normal. Unless you're T1.
But he plays hockey, he eats pizza and McDonalds, he goes to birthday parties and eats a cupcake/cake. Normal!
Truth is he isn't normal - this life we live isn't normal. It's different, and it's harder than hell. We put on a brave face and plow our way through every 24 hours and if you didn't know our situation, you'd assume everything is well. Truth is we don't get enough sleep; truth is we have diabetes on the brain 24/7/365. Truth is every food item I look at, a number is associated with it. (Example: I once saw a kid eat an applesauce pouch, a Slo-Poke candy, a Dilly Bar and a pack of fruit snacks all in the course of one hockey game. Want to know what popped into my head? 10, 35, 24, 20. In that order. Carb counts for everything that child ate.) It's not because I'm trying to - it's because for the last 2 years that's how I've had to look at food and it's just how my brain works now. Truth is T1 has put a strain on our family. Truth is, Jordan and I don't go anywhere or do anything with friends because the question looms "Who's going to watch Trey?" Truth is, it's also unfair to Delanie.
Look, I'm not trying to have everyone say "Poor Natalie". Read it how you want, but this life isn't for the weak. It's a daily struggle and hell, sometimes it's an hourly struggle. Jordan and I are in control of keeping our child alive and making the right decisions at the spur of the moment. Even his school nurse verifies with me different things. It's exhausting! But here we are - living the life we were handed. We don't know if we are doing it right, we don't know if we could be better, we are just doing the best we can.
There are still days I go through the grieving process. There are days I feel so totally defeated by this disease, I cry for hours. Some days we nail it and we smile and give high-fives. Some days I'm so pissed off about it, that I wonder what we did to deserve this battle. Sometimes I am thankful that it's not worse (such a touchy phase. Please don't ever, ever say this to a T1 family). We miss the easy life ... the life where Trey ate anything he wanted and we got to sleep 8 solid hours. The life where anyone could watch Trey for 3 hours so mom and go to Lagers. . The life where we didn't even know what a normal blood sugar was or how disgusting the smell of insulin is.
But it's not our life. Our life is complicated. It's not normal - it's different. So many people don't understand it; and truthfully until you live it you can't fully wrap your head around it either. But friends and even family just don't understand how much effort and thought it takes to make sure Trey is OK. From extra CGM and pump sites, to making sure there is the correct foods/drinks for him, to monitor his activity level, to having someone 'watch' him.
You can't just take Trey to an event without him having his kit, a snack and a bottle of water. You can't allow him to eat foods without having to give him insulin. If his sugar is high you don't feed him more carbs, therefore you must know the carb counts for foods and know he needs protein to go with it. Just because a food is healthy - it's not always safe for Trey's blood sugar. Banana??? No way. EVERY DETAIL OF OUR LIVES revolves around Trey. Everything. Normal??? Not for most, but I guess for us, it is.
Sunday, March 11, 2018
Happy 2 Year Diaversary
"Being diagnosed with diabetes isn't something to celebrate, but the
hard work, perseverance and bravery you have shown throughout your
journey definitely is."
Two years ago I sat in a doctors office with Trey hearing the words "Trey has Type 1 Juvenile Diabetes." It is a day I won't ever forget. I remember calling the doctors office at 8:02am that morning asking for a diabetes test; I remember looking at Trey sitting on the couch looking exhausted and not wanting to eat breakfast; I remember the nurse squinting her eyes at me when she asked why I wanted him tested for diabetes; I remember the look on Dr Biegler's face when he came in the room after getting the urine results; I remember holding Trey down on the table in the lab as they drew blood from his arm as I reassured him he was so brave and strong; I remember holding Trey on my lap when Dr Biegler came in the room for the second time and him saying "I don't like this ..." and how he wiped his eyes when he said the dreadful words to me. I remember looking at Trey and with tears in my eyes, I gave him my bravest smile and then texted Jordan to please come to the doctors office. It wasn't a shock for me, but it still hurt. Like I often do in tough situations, I pull up my big girl panties and forge ahead to get business done and then when no one is looking, I let it all out and have the breakdown.
Two years has felt both like two days and yet 20 years all at the same time. When I was talking to Trey about his upcoming 2 year diaversary, I asked him if it has felt like he's had T1 for a long time or no. He said, "Like 1,000 days yeah."
I look at how far he (and we!) has come in two years. How at the beginning of this journey, we didn't know what foods to buy, how to adjust insulin, what a CGM was, etc. We have learned so much, and we continue to learn it. Trey has always been great at his site changes and about foods, but he's becoming so much more aware of how his body feels when he is low or high. He really has become more independent and more responsible about his care. During school hours, he watches the clock and knows when it's time to check his sugar. He knows to check carb counts on the classroom snack to see if it is within his range, and if not, he picks from his own bucket. When he has school lunch, he knows to ask for things "without the bun please" and that by just looking at a banana, his blood sugar rises (ok, so that's not quite accurate but bananas are a major No-No for him).
I look at the last two years and see all the people we have met because of Type 1. I look at the money we (YOU!) have raised for JDRF to help find a cure. I see the people who we have helped in one way or another because of us speaking up about T1D. I think of Trey Bagwell who will forever be in our hearts for all he did and I know him being in Aberdeen was for us - not for the Wings. I see the members on T1D Trey's Facebook page and realize how many people we have educated on the facts of T1D. I smile when I remember the newspaper wanting to interview him and help spread awareness. We are making a difference and that is something I am beyond proud of. Our work isn't done though.
Trey has an Instagram page with photos of his Dexcom numbers and other things. Today I received a message from a family in Pennsylvania who wanted to thank Trey for posting pictures because her 6 year old T1 daughter wanted to try the Dexcom after seeing Trey's photos. The mother and I began a conversation on T1D and she told me she never thought someone in South Dakota would be the person she and her daughter needed, but we were and they found Trey's page so inspiring. The little girl asked her mom if her and Trey could have a play-date and be friends. I sobbed ... I'm so happy that because of something as simple as photos of Trey's life with T1D, he touched another family and now their daughter is willing to wear a Dexcom.
Trey Thomas, I am so proud of you for how you handle your disease. You are so strong and brave and you are a terrific advocate for those living with T1D. How you've learned to listen to your body is something I am most proud of. I love that you explain your finger pokes to those who watch and ask questions. I love that you know carb counts on foods and how you know what are good/bad choices depending on your blood sugar. It makes me smile to know how many lives you've touched and how many others you've helped out just by being open and honest about the disease. It warms my heart that you, like me, get upset when we hear of a new T1 diagnoses and that you say "We need to help them."
Happy 2 year Diaversary, buddy. Today we celebrate another year of life of living with T1, how far you have come, how much stronger you are and your bravery. "Throughout your diabetes journey, I have seen you grow stronger and deal with things no one even knew you were capable of. Being diagnosed with diabetes is an overwhelming experience, and living with it requires hard work, resilience, persistence and courage. That is something to be so, so proud of. Today, we do not celebrate the highs and lows, but rather the strength you have shown by dealing with them all day, every day." (not written by me, but so fitting)
730 Days
6,932 Finger Pokes (average)
17 Vials of insulin
7 Pen vials of insulin
99 CGM site changes
70 pump site changes
100s of manual injections prior to pump
1 kick-ass little boy
Two years ago I sat in a doctors office with Trey hearing the words "Trey has Type 1 Juvenile Diabetes." It is a day I won't ever forget. I remember calling the doctors office at 8:02am that morning asking for a diabetes test; I remember looking at Trey sitting on the couch looking exhausted and not wanting to eat breakfast; I remember the nurse squinting her eyes at me when she asked why I wanted him tested for diabetes; I remember the look on Dr Biegler's face when he came in the room after getting the urine results; I remember holding Trey down on the table in the lab as they drew blood from his arm as I reassured him he was so brave and strong; I remember holding Trey on my lap when Dr Biegler came in the room for the second time and him saying "I don't like this ..." and how he wiped his eyes when he said the dreadful words to me. I remember looking at Trey and with tears in my eyes, I gave him my bravest smile and then texted Jordan to please come to the doctors office. It wasn't a shock for me, but it still hurt. Like I often do in tough situations, I pull up my big girl panties and forge ahead to get business done and then when no one is looking, I let it all out and have the breakdown.
Two years has felt both like two days and yet 20 years all at the same time. When I was talking to Trey about his upcoming 2 year diaversary, I asked him if it has felt like he's had T1 for a long time or no. He said, "Like 1,000 days yeah."
I look at how far he (and we!) has come in two years. How at the beginning of this journey, we didn't know what foods to buy, how to adjust insulin, what a CGM was, etc. We have learned so much, and we continue to learn it. Trey has always been great at his site changes and about foods, but he's becoming so much more aware of how his body feels when he is low or high. He really has become more independent and more responsible about his care. During school hours, he watches the clock and knows when it's time to check his sugar. He knows to check carb counts on the classroom snack to see if it is within his range, and if not, he picks from his own bucket. When he has school lunch, he knows to ask for things "without the bun please" and that by just looking at a banana, his blood sugar rises (ok, so that's not quite accurate but bananas are a major No-No for him).
I look at the last two years and see all the people we have met because of Type 1. I look at the money we (YOU!) have raised for JDRF to help find a cure. I see the people who we have helped in one way or another because of us speaking up about T1D. I think of Trey Bagwell who will forever be in our hearts for all he did and I know him being in Aberdeen was for us - not for the Wings. I see the members on T1D Trey's Facebook page and realize how many people we have educated on the facts of T1D. I smile when I remember the newspaper wanting to interview him and help spread awareness. We are making a difference and that is something I am beyond proud of. Our work isn't done though.
Trey has an Instagram page with photos of his Dexcom numbers and other things. Today I received a message from a family in Pennsylvania who wanted to thank Trey for posting pictures because her 6 year old T1 daughter wanted to try the Dexcom after seeing Trey's photos. The mother and I began a conversation on T1D and she told me she never thought someone in South Dakota would be the person she and her daughter needed, but we were and they found Trey's page so inspiring. The little girl asked her mom if her and Trey could have a play-date and be friends. I sobbed ... I'm so happy that because of something as simple as photos of Trey's life with T1D, he touched another family and now their daughter is willing to wear a Dexcom.
Trey Thomas, I am so proud of you for how you handle your disease. You are so strong and brave and you are a terrific advocate for those living with T1D. How you've learned to listen to your body is something I am most proud of. I love that you explain your finger pokes to those who watch and ask questions. I love that you know carb counts on foods and how you know what are good/bad choices depending on your blood sugar. It makes me smile to know how many lives you've touched and how many others you've helped out just by being open and honest about the disease. It warms my heart that you, like me, get upset when we hear of a new T1 diagnoses and that you say "We need to help them."
Happy 2 year Diaversary, buddy. Today we celebrate another year of life of living with T1, how far you have come, how much stronger you are and your bravery. "Throughout your diabetes journey, I have seen you grow stronger and deal with things no one even knew you were capable of. Being diagnosed with diabetes is an overwhelming experience, and living with it requires hard work, resilience, persistence and courage. That is something to be so, so proud of. Today, we do not celebrate the highs and lows, but rather the strength you have shown by dealing with them all day, every day." (not written by me, but so fitting)
730 Days
6,932 Finger Pokes (average)
17 Vials of insulin
7 Pen vials of insulin
99 CGM site changes
70 pump site changes
100s of manual injections prior to pump
1 kick-ass little boy
Wednesday, March 7, 2018
F U T1D
I don't even know how to explain how I feel about today. My mood today hasn't been great thanks to the lack of sleep the last couple nights. Sorry ... I'm a person who needs her sleep. While I'd love a solid 8 hours ... I'm down to calling 5 1/2-6 sufficient.
Trey has a head old which means whacky sugars. We also have had 2 snow days from school so the kids have been at home, playing electronics and not following a schedule or getting 45 minutes of recess time (although I did make them go outside each day). What I'm getting at is that Trey's been running high for about ... 3 days. We are using oils in a diffuser and on his feet as well as sucking on vitamin c drops but it is what it is ... an illness.
Then last night T1D decides to be an asshole and hover at about 75-80 all night long. While that's a great blood sugar, it's not so great for night-time. In addition, my alert is set at 75 so my phone will buzz when he gets to 75 and his alert is set at 80 so his monitor buzzes at 80. There was A LOT of buzzing last night. At 3am I wake - because I always wake at 3am - and I decide to set a temp basal on his pump so he gets a little less insulin for the next three hours because Momma needs her beauty rest. Wouldn't you know that 800 dump trucks decide this is the best time to start hauling snow out of town? About every 15 seconds there is a dump truck going 50mph down 8th Ave hitting that little sewer hole that is RIGHT OUTSIDE MY BEDROOM WINDOW which makes it sound like whatever vehicle hits it, is coming through my bedroom wall. It was 4:18am the last time I looked at the clock. 6:39am my alarm goes off and I knew from the second my eyes opened .... momma was in a bad mood.
So Trey has peanut butter toast and bacon for breakfast. I only allowed one piece because lately 2 pieces of toast sends him over 200. Jordan doses insulin and away they go off to school. About 8:30 I check his CGM number and he's 289. WHAT??? I confirm with Jordan insulin was given. At 9:15 I get a message from Nurse Heather that says 297 with a sad face. Yep ... awesome. She gives him a snack, doses insulin and we wait. Soon we are looking at 350 and I knew something was wrong. More insulin given and a conversation with Jordan about what we should do. It's creeping up to lunch time and his CGM is now reading "HIGH" which means it's over 400.
Keep in mind momma was 1) short on sleep 2) angry as soon as she woke up 3) working with 3 toddlers, 2 infants and 2 more extra drop-in children today 4) trying to prepare daycare kids lunch 5) arguing with a fellow DoTerra oil user/seller about benefits of oils and T1D 6) listening to her husband asking "what should I do?"
I'm now worried about Trey. Obviously something isn't right and he needs to have his ketones checked and probably needs a pump change. Jordan went to school - Moderate ketones and sugar 347. Trey ate lunch, went outside and sugars continued to climb so he changed the pump site. Ketones are now gone, sugar coming down fairly well so all is well.
2:08pm (3 of 7 daycare kids awake already ... just tossing this fun fact in there for drama effect) message from Nurse Heather "60 - juicing".
Oh. My. God.
From 400 to 60. I honestly wanted to cry, scream, throw up, run away, and kick the cat. I just kept saying "poor Trey ... his poor little body. What does a high to low sugar like that do to my little guy?" Jordan was quite worried as well. So was Nurse Heather. He ended up having four juice boxes between 2 and 3:10. He also had applesauce. He rode between 70-75 from the time he got home at 3:15 until supper at 6pm. When he walked in the door, he looked like total shit. He was pale, he had dark bags under his eyes, he looked like he hadn't slept in weeks. I asked if he was OK and he said no. He said he just feels bad. Couldn't explain to me what it was, but he didn't feel good. Right before supper he was at 84. Spaghetti (whole grain pasta), 2 breadsticks, Fairlife milk. He went up to 150 but by 7:30 he was back down to the perfect 100. Bag of cheetos at bedtime and now 107.
Sometimes I just don't understand. I mean, I usually don't understand, but on days like today, when diabetes flat out kicks his (our) ass ... it sucks the life right out of you. I can't imagine what Trey felt today .. the high down to the low, all the sugar from juice in his system ... all of it. He missed so much class time today because he was in the office getting 'fixed up'. I was exhausted from the worry. From trying to figure out what to do next, how many carbs to say to give and when to give it. The constant checking of the CGM to see if he was finally trending down and then trending back up. Nurse Heather actually called me about 3:06 today because as Trey was in line for the bus in the gym, he really didn't feel good so he grabbed a teacher and she took him back down to the office. He was 56 via finger poke. Heather made him slam a juice as she called me and asked if he should ride the bus.
It's scary sometimes. People tell us we are strong and Trey is brave and strong and the truth is - we really have to be. It truly is a mater of life and death and we all do have to work together and be on the same page because if we aren't ... Trey isn't being taken care of and I can't lose my little boy. It's reality - it's a reality that no one wants to talk about. Many people don't even realize T1 can kill a person. No, we don't like to focus on the bad (blindness, numbness in the nerves, losing limbs, loss of kidney's) but it's reality. It is also reality that T1 people can live a very long, full, 'healthy' life. It's a fact that T1's are some of the strongest people on the planet. It's a fact that T1's are brave. It's also a fact that there are days that T1 kicks your ass and beats you down and reduces you to tears and you question "why?" because you're so tired and frustrated.
Real life ... real disease .. real people ... really sucks. Truly.
Thank God tomorrow is another day.
Trey has a head old which means whacky sugars. We also have had 2 snow days from school so the kids have been at home, playing electronics and not following a schedule or getting 45 minutes of recess time (although I did make them go outside each day). What I'm getting at is that Trey's been running high for about ... 3 days. We are using oils in a diffuser and on his feet as well as sucking on vitamin c drops but it is what it is ... an illness.
Then last night T1D decides to be an asshole and hover at about 75-80 all night long. While that's a great blood sugar, it's not so great for night-time. In addition, my alert is set at 75 so my phone will buzz when he gets to 75 and his alert is set at 80 so his monitor buzzes at 80. There was A LOT of buzzing last night. At 3am I wake - because I always wake at 3am - and I decide to set a temp basal on his pump so he gets a little less insulin for the next three hours because Momma needs her beauty rest. Wouldn't you know that 800 dump trucks decide this is the best time to start hauling snow out of town? About every 15 seconds there is a dump truck going 50mph down 8th Ave hitting that little sewer hole that is RIGHT OUTSIDE MY BEDROOM WINDOW which makes it sound like whatever vehicle hits it, is coming through my bedroom wall. It was 4:18am the last time I looked at the clock. 6:39am my alarm goes off and I knew from the second my eyes opened .... momma was in a bad mood.
So Trey has peanut butter toast and bacon for breakfast. I only allowed one piece because lately 2 pieces of toast sends him over 200. Jordan doses insulin and away they go off to school. About 8:30 I check his CGM number and he's 289. WHAT??? I confirm with Jordan insulin was given. At 9:15 I get a message from Nurse Heather that says 297 with a sad face. Yep ... awesome. She gives him a snack, doses insulin and we wait. Soon we are looking at 350 and I knew something was wrong. More insulin given and a conversation with Jordan about what we should do. It's creeping up to lunch time and his CGM is now reading "HIGH" which means it's over 400.
Keep in mind momma was 1) short on sleep 2) angry as soon as she woke up 3) working with 3 toddlers, 2 infants and 2 more extra drop-in children today 4) trying to prepare daycare kids lunch 5) arguing with a fellow DoTerra oil user/seller about benefits of oils and T1D 6) listening to her husband asking "what should I do?"
I'm now worried about Trey. Obviously something isn't right and he needs to have his ketones checked and probably needs a pump change. Jordan went to school - Moderate ketones and sugar 347. Trey ate lunch, went outside and sugars continued to climb so he changed the pump site. Ketones are now gone, sugar coming down fairly well so all is well.
2:08pm (3 of 7 daycare kids awake already ... just tossing this fun fact in there for drama effect) message from Nurse Heather "60 - juicing".
Oh. My. God.
From 400 to 60. I honestly wanted to cry, scream, throw up, run away, and kick the cat. I just kept saying "poor Trey ... his poor little body. What does a high to low sugar like that do to my little guy?" Jordan was quite worried as well. So was Nurse Heather. He ended up having four juice boxes between 2 and 3:10. He also had applesauce. He rode between 70-75 from the time he got home at 3:15 until supper at 6pm. When he walked in the door, he looked like total shit. He was pale, he had dark bags under his eyes, he looked like he hadn't slept in weeks. I asked if he was OK and he said no. He said he just feels bad. Couldn't explain to me what it was, but he didn't feel good. Right before supper he was at 84. Spaghetti (whole grain pasta), 2 breadsticks, Fairlife milk. He went up to 150 but by 7:30 he was back down to the perfect 100. Bag of cheetos at bedtime and now 107.
Sometimes I just don't understand. I mean, I usually don't understand, but on days like today, when diabetes flat out kicks his (our) ass ... it sucks the life right out of you. I can't imagine what Trey felt today .. the high down to the low, all the sugar from juice in his system ... all of it. He missed so much class time today because he was in the office getting 'fixed up'. I was exhausted from the worry. From trying to figure out what to do next, how many carbs to say to give and when to give it. The constant checking of the CGM to see if he was finally trending down and then trending back up. Nurse Heather actually called me about 3:06 today because as Trey was in line for the bus in the gym, he really didn't feel good so he grabbed a teacher and she took him back down to the office. He was 56 via finger poke. Heather made him slam a juice as she called me and asked if he should ride the bus.
It's scary sometimes. People tell us we are strong and Trey is brave and strong and the truth is - we really have to be. It truly is a mater of life and death and we all do have to work together and be on the same page because if we aren't ... Trey isn't being taken care of and I can't lose my little boy. It's reality - it's a reality that no one wants to talk about. Many people don't even realize T1 can kill a person. No, we don't like to focus on the bad (blindness, numbness in the nerves, losing limbs, loss of kidney's) but it's reality. It is also reality that T1 people can live a very long, full, 'healthy' life. It's a fact that T1's are some of the strongest people on the planet. It's a fact that T1's are brave. It's also a fact that there are days that T1 kicks your ass and beats you down and reduces you to tears and you question "why?" because you're so tired and frustrated.
Real life ... real disease .. real people ... really sucks. Truly.
Thank God tomorrow is another day.
Saturday, March 3, 2018
Atsmosphere
LOWS ... we've been dealing with a week of constant lows. It's not typical for Trey. He's gone through four juice boxes at school this week. They haven't been scary lows, we've been able to get him up ok, but he doesn't climb sky high from 10 carbs like normal.
Not that I like lows, but they are easier to bring up than trying to bring a high down. He feels low, he eats some sugar, and he goes back to normal activity in 15-20 minutes. Highs seem to take hours to come down and it's frustrating and annoying.
Speaking with a couple other people who relate to the T1 world -- they, too, have been lower than normal this week. Means there is something in the air! Crazy, right? It's so true though. Barometric pressures ... temps ... moon ... friggin everything affects sugars. I never knew but quickly discovered it.
March brings our 3 month Endo appointment in Sioux Falls. Hoping for a good A1C again ... under 7.5 would be ideal. Hockey has been over for a month, but he will begin 4 on 4 hockey for 4 weeks here pretty soon. It will be good to get him back on the ice to work on the skills. We also will be heading to Sioux Falls for a mini vacation as we will take in the college hockey tournament. We had hoped Ohio State would get put in the SF bracket but it's not looking good for that. Which is good though ... means OSU is ranked high enough to play closer to home. Now we hope St Cloud will beat out UND (SORRY FRIENDS) and they come to SF as there are a few former Wings players on the Huskies team.
Spring is right around the corner .. my favorite month. Let it melt and give me tulips! !
Not that I like lows, but they are easier to bring up than trying to bring a high down. He feels low, he eats some sugar, and he goes back to normal activity in 15-20 minutes. Highs seem to take hours to come down and it's frustrating and annoying.
Speaking with a couple other people who relate to the T1 world -- they, too, have been lower than normal this week. Means there is something in the air! Crazy, right? It's so true though. Barometric pressures ... temps ... moon ... friggin everything affects sugars. I never knew but quickly discovered it.
March brings our 3 month Endo appointment in Sioux Falls. Hoping for a good A1C again ... under 7.5 would be ideal. Hockey has been over for a month, but he will begin 4 on 4 hockey for 4 weeks here pretty soon. It will be good to get him back on the ice to work on the skills. We also will be heading to Sioux Falls for a mini vacation as we will take in the college hockey tournament. We had hoped Ohio State would get put in the SF bracket but it's not looking good for that. Which is good though ... means OSU is ranked high enough to play closer to home. Now we hope St Cloud will beat out UND (SORRY FRIENDS) and they come to SF as there are a few former Wings players on the Huskies team.
Spring is right around the corner .. my favorite month. Let it melt and give me tulips! !
Friday, February 23, 2018
Who wants a job?
We are spoiled having Heather as our school nurse ... I'm well aware. I have heard stories from others who don't have a good school nurse and all the extra stress that causes not only the parents, but the T1 child him/herself. I don't take her for granted and I've expressed to her many times our gratitude and that she can never leave us. HaHa
This week her poor infant is sick ... like super sick. He's in the hospital and they don't really know what's wrong. All tests come back negative but he's basically having Influenza symptoms. It breaks my heart for her and for the little guy as a sick child is never fun, but a sick, hospitalized infant is down-right awful.
We have had a substitute nurse this week, obviously. Unfortunately, it's the old hag that we've dealt with before who Trey really does not like. Jordan and I try to keep Trey level headed about her and be sure he's respectful to her, even if he doesn't like her. Last year his Kindergarten Teacher made some comments to Jordan and I about how this old hag isn't really very friendly and how she felt bad for Trey because he was so scared of her and nervous around her.
We've dealt with her a few times this school year already, and every time Trey dreads it but he keeps an open mind. Now, Trey handles much of his care himself. He knows what time's he's supposed to check his sugar, he knows about how many carbs his snacks should be and basically the only need for the nurse is to administer insulin for him as I'm not ready for him to do that himself yet. One day he told me, "She's not that bad I guess. She talked to me about hockey a little bit." which made me feel good because I know that's something to make him comfortable.
According to the 504 Plan I have typed up for the school, the nurse is to contact me with any questions. Heather has it written for her Subs to contact me to let me know what the pre/post blood sugar is for meals and snacks and to work with me on the proper snack carb count. Wednesday I heard from the old hag once ... at the end of the day. Thursday I heard from the hag once ... at 2:45.
(504 violation x2) You already saw the convo her and I had via the phone yesterday on the facebook page. When Trey got home at 3:10 he came downstairs like always and said, "Mommy ... today Kathy was kinda mean again. When I say she was mean, she just has a really bad mean voice. I was at recess and then I had PE and I buzzed low when Mrs Falk was talking to our class. I told Kathy I was low and she said, 'Go back and listen to Mrs Falk. School is almost done.' so I did but I tried really hard not to cry because I felt low too and I buzzed."
If you know me ... you know I had steam rolling out of my ears already after the phone convo with her but after talking to my son about it, I was showing those Devil Horns.
You sent a child ... who was buzzing low ... back to his class without treating the low sugar because school was almost out???????? 504 Violation His sugar was 73 with an arrow kitty-korner down on the CGM. He had 15 minutes of school left and a 10 minute bus ride home. 25 minutes ... dropping sugar and you didn't want to deal with him for 5 seconds to give him a damn juice box??? REALLY?
The reason she eventually called me was because the teacher saw my text message I sent to her 15 minutes prior to the phone call.
I realize I am a protective parent. I realize we are spoiled with Heather (again). I realize I don't have the most patience in the world. I realize Trey is my baby. But what I don't understand is why in the hell this woman even agrees to substitute. You have to give insulin MAYBE three times a day to a child via a pump. THAT'S IT. He does the rest on his own!!! I have carb counts written down on everything that is in his snack bin and in his "Low Sugar Treatment" bin. I have a note in his lunch box EVERY DAY with the amount of foods and the carb counts on it. I can't make it any easier!! Yet she's so inconvenienced by him telling her he's low in the middle of a lecture by the Guidance Counselor to give him a juice box???? Furious.
So today, 9:08 I get a text message from the teacher at school that says, "Trey feels low. 80 finger poke. Can he have a snack now or does he have to wait until 9:15? No nurse here yet." I tell her he can have 10-12 carbs now. Then wrote back "Thanks. Nurse here now." followed with the eye-roll emoji face. That's all I needed to know that the teacher wasn't impressed with this old hag either. I sent it to Jordan who went to the school and talked to the teacher about what she's seen this week and what happened yesterday to be sure Trey wasn't just telling us a lie. Nope ... Trey was right. The teacher said she's not impressed with how this lady does it either and that she's not very friendly. She says Trey is very independent in his care and she can tell how nervous he is with the old hag. Yesterday once he asked the teacher to help him and to not tell the nurse. She said she was surprised he went to the old hag yesterday afternoon when he was low because he tries to avoid her but he did what he has been told to do and she knew if he was willing to deal with her - he truly didn't feel well.
Got an alert of a 64 sugar after his lunch today. She called me, "Trey came in from recess and told his teacher he didn't feel good but he didn't come and tell me. She called me and he's having a juice box now that she gave him but what else do you want me to do." I said to feed him whatever he picks up to 20 carbs. She says, "oookkk then." and hangs up. Ya know - I don't blame Trey at all. Just talking to her for 34 seconds on the phone is enough to tell me what she's like in person.
We will be visiting with the Nurse Supervisor on Monday and inform her that this old hag will not be taking care of Trey again. She has two months until official retirement but if she can't do her god damn job then I sure as hell won't make her. It's MY job to be sure my kid is safe and taken care of, so I'll keep doing MY job.
This week her poor infant is sick ... like super sick. He's in the hospital and they don't really know what's wrong. All tests come back negative but he's basically having Influenza symptoms. It breaks my heart for her and for the little guy as a sick child is never fun, but a sick, hospitalized infant is down-right awful.
We have had a substitute nurse this week, obviously. Unfortunately, it's the old hag that we've dealt with before who Trey really does not like. Jordan and I try to keep Trey level headed about her and be sure he's respectful to her, even if he doesn't like her. Last year his Kindergarten Teacher made some comments to Jordan and I about how this old hag isn't really very friendly and how she felt bad for Trey because he was so scared of her and nervous around her.
We've dealt with her a few times this school year already, and every time Trey dreads it but he keeps an open mind. Now, Trey handles much of his care himself. He knows what time's he's supposed to check his sugar, he knows about how many carbs his snacks should be and basically the only need for the nurse is to administer insulin for him as I'm not ready for him to do that himself yet. One day he told me, "She's not that bad I guess. She talked to me about hockey a little bit." which made me feel good because I know that's something to make him comfortable.
According to the 504 Plan I have typed up for the school, the nurse is to contact me with any questions. Heather has it written for her Subs to contact me to let me know what the pre/post blood sugar is for meals and snacks and to work with me on the proper snack carb count. Wednesday I heard from the old hag once ... at the end of the day. Thursday I heard from the hag once ... at 2:45.
(504 violation x2) You already saw the convo her and I had via the phone yesterday on the facebook page. When Trey got home at 3:10 he came downstairs like always and said, "Mommy ... today Kathy was kinda mean again. When I say she was mean, she just has a really bad mean voice. I was at recess and then I had PE and I buzzed low when Mrs Falk was talking to our class. I told Kathy I was low and she said, 'Go back and listen to Mrs Falk. School is almost done.' so I did but I tried really hard not to cry because I felt low too and I buzzed."
If you know me ... you know I had steam rolling out of my ears already after the phone convo with her but after talking to my son about it, I was showing those Devil Horns.
You sent a child ... who was buzzing low ... back to his class without treating the low sugar because school was almost out???????? 504 Violation His sugar was 73 with an arrow kitty-korner down on the CGM. He had 15 minutes of school left and a 10 minute bus ride home. 25 minutes ... dropping sugar and you didn't want to deal with him for 5 seconds to give him a damn juice box??? REALLY?
The reason she eventually called me was because the teacher saw my text message I sent to her 15 minutes prior to the phone call.
I realize I am a protective parent. I realize we are spoiled with Heather (again). I realize I don't have the most patience in the world. I realize Trey is my baby. But what I don't understand is why in the hell this woman even agrees to substitute. You have to give insulin MAYBE three times a day to a child via a pump. THAT'S IT. He does the rest on his own!!! I have carb counts written down on everything that is in his snack bin and in his "Low Sugar Treatment" bin. I have a note in his lunch box EVERY DAY with the amount of foods and the carb counts on it. I can't make it any easier!! Yet she's so inconvenienced by him telling her he's low in the middle of a lecture by the Guidance Counselor to give him a juice box???? Furious.
So today, 9:08 I get a text message from the teacher at school that says, "Trey feels low. 80 finger poke. Can he have a snack now or does he have to wait until 9:15? No nurse here yet." I tell her he can have 10-12 carbs now. Then wrote back "Thanks. Nurse here now." followed with the eye-roll emoji face. That's all I needed to know that the teacher wasn't impressed with this old hag either. I sent it to Jordan who went to the school and talked to the teacher about what she's seen this week and what happened yesterday to be sure Trey wasn't just telling us a lie. Nope ... Trey was right. The teacher said she's not impressed with how this lady does it either and that she's not very friendly. She says Trey is very independent in his care and she can tell how nervous he is with the old hag. Yesterday once he asked the teacher to help him and to not tell the nurse. She said she was surprised he went to the old hag yesterday afternoon when he was low because he tries to avoid her but he did what he has been told to do and she knew if he was willing to deal with her - he truly didn't feel well.
Got an alert of a 64 sugar after his lunch today. She called me, "Trey came in from recess and told his teacher he didn't feel good but he didn't come and tell me. She called me and he's having a juice box now that she gave him but what else do you want me to do." I said to feed him whatever he picks up to 20 carbs. She says, "oookkk then." and hangs up. Ya know - I don't blame Trey at all. Just talking to her for 34 seconds on the phone is enough to tell me what she's like in person.
We will be visiting with the Nurse Supervisor on Monday and inform her that this old hag will not be taking care of Trey again. She has two months until official retirement but if she can't do her god damn job then I sure as hell won't make her. It's MY job to be sure my kid is safe and taken care of, so I'll keep doing MY job.
Saturday, February 3, 2018
"That Parent"
I had to be 'That Parent' today, and I'm not even sorry about it.
Trey's Termite Hockey career ended today and he will move up to the next level of Mites next year. The team had a pizza party for the boys after the game today and I made sure my little "sugar baby" was taken care of. Jordan talked to the coordinator about what kind of pizza the kids were getting and said he was going to buy Trey a thin crusted one. The coordinator insisted she would order him one and apologized for not thinking about Trey's needs. We don't expect people to think of Trey's needs ... why would they?? It's Jordan and I's job to think of our son's needs and take care of things accordingly. Eventually it will be Trey who will need to speak up and make the choices.
When the pizza's arrived, the coordinator asked me to follow her and grab our pizza. She handed me a box, I said 'thank you' and a fellow hockey mom (and a lady I've known for 30 years) looked at me strange. I said, "It's Trey's." and she said, "Oh, does he have allergies or something too?" and I said, "Nope, but it's half the carbs." and I walked away. Didn't need to get into the whole deal right at that time, but I hope sometime she asks details. I'm happy to quickly explain.
I was "that parent". I am "that parent" for the sake of my son and I'm not sorry, embarrassed or ashamed. As a parent, we look out for our children and do what is best for them, right? That's exactly what I did. We didn't raise a stink about pizza, Jordan was going to buy the pizza and no one would even know about it --- and in fact, hardly anyone else noticed.
The same mom that made comments to me brought chocolate chip cookies and juice boxes. I took three 12 packs of PowerAde Zero.
When all was said and done, both Jordan and I thanked the coordinator and a coach for understanding and they both said that it wasn't a big deal and they felt bad they didn't know or think of Trey.
It's such a fine line between your kid being normal and yet your kid being different. Yes, he could have had regular pizza at 31 carbs per slice, a juice box for 15 carbs, a chocolate chip cookie for 15 carbs and 15 chips for 16 carbs .... and we could've given him a massive load of insulin to cover it and then chased highs the rest of the day. It's true. We opted on a pizza that was 16 carbs per slice, a powerade zero for 0 carbs, and the cookie and chips as mentioned above. He still got 5 units of insulin. (and is running at 150 blood sugar right now - 2 hours after eating) Normal, but different. Healthier too, quite honestly!
As we continue with this hockey deal - and any other sport - it's going to continue to happen ... regular pizza, regular pasta, regular gatorade, etc. Eventually I believe parents/coaches will remember and either just know from previous times or ask Jordan and I. No, I don't want to raise a stink and he is only ONE child on a team of 20+ ... but he deserves to have the things he needs just like any other child. Thin crust vs regular crust ... really DOES make a difference. Regular PowerAde vs PowerAde Zero really DOES make a difference.
I always go to this ... "If a child on the team has a peanut allergy, we would all be fully aware of it and be sure the child is protected. Why isn't diabetes the same? Because if my kid drinks two juice boxes, eats three cookies and has 2 slices of regular crusted pizza - his blood sugar could quite possibly be so high he ends up in DKA and dead. Diabetes kills too."
Forever "That Parent" and damn f'n proud to be!
Trey's Termite Hockey career ended today and he will move up to the next level of Mites next year. The team had a pizza party for the boys after the game today and I made sure my little "sugar baby" was taken care of. Jordan talked to the coordinator about what kind of pizza the kids were getting and said he was going to buy Trey a thin crusted one. The coordinator insisted she would order him one and apologized for not thinking about Trey's needs. We don't expect people to think of Trey's needs ... why would they?? It's Jordan and I's job to think of our son's needs and take care of things accordingly. Eventually it will be Trey who will need to speak up and make the choices.
When the pizza's arrived, the coordinator asked me to follow her and grab our pizza. She handed me a box, I said 'thank you' and a fellow hockey mom (and a lady I've known for 30 years) looked at me strange. I said, "It's Trey's." and she said, "Oh, does he have allergies or something too?" and I said, "Nope, but it's half the carbs." and I walked away. Didn't need to get into the whole deal right at that time, but I hope sometime she asks details. I'm happy to quickly explain.
I was "that parent". I am "that parent" for the sake of my son and I'm not sorry, embarrassed or ashamed. As a parent, we look out for our children and do what is best for them, right? That's exactly what I did. We didn't raise a stink about pizza, Jordan was going to buy the pizza and no one would even know about it --- and in fact, hardly anyone else noticed.
The same mom that made comments to me brought chocolate chip cookies and juice boxes. I took three 12 packs of PowerAde Zero.
When all was said and done, both Jordan and I thanked the coordinator and a coach for understanding and they both said that it wasn't a big deal and they felt bad they didn't know or think of Trey.
It's such a fine line between your kid being normal and yet your kid being different. Yes, he could have had regular pizza at 31 carbs per slice, a juice box for 15 carbs, a chocolate chip cookie for 15 carbs and 15 chips for 16 carbs .... and we could've given him a massive load of insulin to cover it and then chased highs the rest of the day. It's true. We opted on a pizza that was 16 carbs per slice, a powerade zero for 0 carbs, and the cookie and chips as mentioned above. He still got 5 units of insulin. (and is running at 150 blood sugar right now - 2 hours after eating) Normal, but different. Healthier too, quite honestly!
As we continue with this hockey deal - and any other sport - it's going to continue to happen ... regular pizza, regular pasta, regular gatorade, etc. Eventually I believe parents/coaches will remember and either just know from previous times or ask Jordan and I. No, I don't want to raise a stink and he is only ONE child on a team of 20+ ... but he deserves to have the things he needs just like any other child. Thin crust vs regular crust ... really DOES make a difference. Regular PowerAde vs PowerAde Zero really DOES make a difference.
I always go to this ... "If a child on the team has a peanut allergy, we would all be fully aware of it and be sure the child is protected. Why isn't diabetes the same? Because if my kid drinks two juice boxes, eats three cookies and has 2 slices of regular crusted pizza - his blood sugar could quite possibly be so high he ends up in DKA and dead. Diabetes kills too."
Forever "That Parent" and damn f'n proud to be!
Tuesday, January 9, 2018
2018 already!?
I knew it had been awhile since I posted, but October???? Wow! Shame on me! Goodbye to 2017 and hello 2018 I guess.
December really isn't our month it seems. While we did have a fantastic Endo appointment with a 6.9% A1C and a negative test for celiac disease, we lost my step-grandmother on the 27th. Besides myself, I'm pretty sure Grandma Fern was Trey's biggest fan. She was over 80 years old, but loved playing hockey in the hallways of the nursing home with him. She even got her very own stick last year for Christmas. She bragged to every nurse, cook, dietician, maintenance man, stranger that she saw, about her little hockey star Great Grandkid. She had a shadow box made with his photo and the words "Hockey Star #44" on it and that is where she hung up her stick and kept her puck he gave her. She will be missed, but now she gets to watch him play for the rest of his career.
2018 is starting out sort of rocky. Trey has been running higher than normal so we've done some adjustments to his insulin ratios and basal rates. It's a never ending deal, but I'm thankful that I have the confidence and the knowledge to make these adjustments for him. Right now he is averaging 166 and of course I hope to get that back down to the 150's before our appointment in March. January 4th was the first day back at school after Christmas break and Trey was complaining of a tummy ache. I shrugged it off as him not wanting to be at school but at noon, both the nurse and teacher said he wasn't faking it so he came home. Blood sugar was in the 170's but I checked his ketones anyway and it came back as him having a large amount. Naturally I felt bad for not believing him something was wrong. He didn't fail to rub it in my face "I TOLD YOU MY TUMMY HURT!" Mom fail! I used some Doterra oils on him, cranked up his insulin and by the next morning he was good as new. Not sure was was brewing but it didn't hit full force, thankfully.
We got word last week that 'our' Trey Bagwell was traded to the Amarillo Bulls NAHL hockey team. Tough pill to swallow for sure. There have been some tears shed (admittedly mostly by me) but we have to trust that his job here in Aberdeen was done and someone in Amarillo needed him more than we did now. Without getting too sappy, I'm forever grateful for him and his family, and he will live in our hearts forever. Trey hasn't really said much about it, but we did add him to Snapchat so Trey has been sending Bags some snaps and when he read the one that said, "I miss you guys" Trey made a sad face. I don't think it will fully sink in until this weekend when we are at the Odde and there isn't Bagwell anywhere to be found. I can tell you we will be keeping close tabs on the Bulls now! Best of luck, Bags.
Trey was featured in the Aberdeen Newspaper in December for his T1D. Well, it was more because of his social media accounts, but whatever. It's 'out there' about his T1D and I hope it inspired another little T1D to not let the disease stop him/her. God's using Trey and our family and I will do what I can to help raise awareness. Some people call it "attention seeking" and that's fine ~ those people don't matter to me ~ I call it advocating.
As I close, I want to ask you for some extra prayers for our racing buddy, Frank Heckenast Jr. At the end of last year he hit the wall hard with his race car, casing some damage to his neck. He received word yesterday that he is not cleared to race yet and if he takes another hit like that, it would do permanent damage. He's really bummed as the racing season starts up soon, so healing prayers for him are appreciated. He and his crew are like family to us.
Here's to 2018 .... Happy New Year!
December really isn't our month it seems. While we did have a fantastic Endo appointment with a 6.9% A1C and a negative test for celiac disease, we lost my step-grandmother on the 27th. Besides myself, I'm pretty sure Grandma Fern was Trey's biggest fan. She was over 80 years old, but loved playing hockey in the hallways of the nursing home with him. She even got her very own stick last year for Christmas. She bragged to every nurse, cook, dietician, maintenance man, stranger that she saw, about her little hockey star Great Grandkid. She had a shadow box made with his photo and the words "Hockey Star #44" on it and that is where she hung up her stick and kept her puck he gave her. She will be missed, but now she gets to watch him play for the rest of his career.
2018 is starting out sort of rocky. Trey has been running higher than normal so we've done some adjustments to his insulin ratios and basal rates. It's a never ending deal, but I'm thankful that I have the confidence and the knowledge to make these adjustments for him. Right now he is averaging 166 and of course I hope to get that back down to the 150's before our appointment in March. January 4th was the first day back at school after Christmas break and Trey was complaining of a tummy ache. I shrugged it off as him not wanting to be at school but at noon, both the nurse and teacher said he wasn't faking it so he came home. Blood sugar was in the 170's but I checked his ketones anyway and it came back as him having a large amount. Naturally I felt bad for not believing him something was wrong. He didn't fail to rub it in my face "I TOLD YOU MY TUMMY HURT!" Mom fail! I used some Doterra oils on him, cranked up his insulin and by the next morning he was good as new. Not sure was was brewing but it didn't hit full force, thankfully.
We got word last week that 'our' Trey Bagwell was traded to the Amarillo Bulls NAHL hockey team. Tough pill to swallow for sure. There have been some tears shed (admittedly mostly by me) but we have to trust that his job here in Aberdeen was done and someone in Amarillo needed him more than we did now. Without getting too sappy, I'm forever grateful for him and his family, and he will live in our hearts forever. Trey hasn't really said much about it, but we did add him to Snapchat so Trey has been sending Bags some snaps and when he read the one that said, "I miss you guys" Trey made a sad face. I don't think it will fully sink in until this weekend when we are at the Odde and there isn't Bagwell anywhere to be found. I can tell you we will be keeping close tabs on the Bulls now! Best of luck, Bags.
Trey was featured in the Aberdeen Newspaper in December for his T1D. Well, it was more because of his social media accounts, but whatever. It's 'out there' about his T1D and I hope it inspired another little T1D to not let the disease stop him/her. God's using Trey and our family and I will do what I can to help raise awareness. Some people call it "attention seeking" and that's fine ~ those people don't matter to me ~ I call it advocating.
As I close, I want to ask you for some extra prayers for our racing buddy, Frank Heckenast Jr. At the end of last year he hit the wall hard with his race car, casing some damage to his neck. He received word yesterday that he is not cleared to race yet and if he takes another hit like that, it would do permanent damage. He's really bummed as the racing season starts up soon, so healing prayers for him are appreciated. He and his crew are like family to us.
Here's to 2018 .... Happy New Year!
Wednesday, October 18, 2017
Jimmy Kimmel - you dickhead
A show of hands who likes Jimmy Kimmel?????
I'll be honest, I've never watched his show. I did, however, watch a clip of his show on Facebook one time when he was in tears telling about his newborn son who has a heart condition and how he wanted to bring awareness to it. I had tears as I listened to his story and saw how emotional he was. I remember thinking .... yes, raise awareness. This is perfect! Bad things happen to famous people as well, and these people have the voice/money/following to spread awareness to MILLIONS of people within mere minutes.
Tonight I'm reading posts on my Mod Squad Facebook page and I come across a screen shot of Jimmy Kimmel eating a box of cookies sent to him by Kelly Ripa. He says, "You're sweeter than diabetes."
Now, it's not a secret to those who have talked to me this week, that my mood has been less than pleasant the last couple days. I'm probably PMSing (how's that for TMI?!) since I've eaten a carton of cookies and drank a gallon of chocolate milk since Sunday. Anyway -- this post Jimmy made set me off. Like OOOOOFFFFFFFFFFF.
People!!! THIS IS WHY THE WORLD THINKS DIABETES IS A GOD DAMN JOKE! Normal every day people who are ignorant of T1D drive me crazy. Famous people --- who claim to be big healthcare advocates --- who are ignorant of T1D flat out pisses me off. He has MILLIONS of people following him on Facebook/Twitter/Instagram and MILLIONS of people watch his show .... and now MILLIONS of people are STILL misinformed on T1D. uuugghhhhh
I know, I know ... calm down. Take a deep breath. He doesn't know better. He was trying to be funny. I get offended too easy. I know. Say it .. I know. What I also know is that playing a pancreas for the past year and a half isn't a f'n joke. It's hard work!
WHY is it still OK for people to link cupcakes, donuts, candy bars to diabetes? WHY?????? My friend's 9 month old daughter was diagnosed .... because she ate donuts???? NO! Because her pancreas is an asshole and decided to stop making insulin.
Jimmy Kimmel's son has a major heart issue. As I was scrolling through some of the comments left to him by angry T1 folks, someone posted "Eating all those cookies will give you open heart surgery" and people started attacking this guy for his comment. Saying things like his kid is sick, you jerk! and that's really not funny at all given his baby had open heart surgery. The guy's point was proven .... that as soon as we make fun of something other than diabetes, the world steps in and fights. When will people start fighting for diabetes? When will they stop linking diabetes ... type 1 or type 2 ... to sugar?? WHEN?? It's 2017!!!
Why can't we make fun of childhood cancer? Or any cancer for that matter?? My uncle had bladder cancer ... we sure didn't think that was funny or make jokes about how that could've possibly happened. When someone has brain cancer we don't assume it's because they are dumb or because they are too smart for their own good! Someone gets prostate cancer, breast cancer, ovarian cancer .... we all pray for them. We wear pink the whole month of October. Let me ask you ... do you know what month is National Diabetes month?? Do you know what colors are associated with T1D?
I tell you what ... the day before 3/14/2016 I didn't know much about diabetes. I knew a little from having gestational diabetes but I had no clue what dealing with Type 1 Diabetes was all about. I will be honest and tell you that working with a few people at Wyndham who had Type 2 diabetes got to be 'old' for a lack of a better word. One guy thought he had to eat at 12:00 pm every day or he would have a diabetic reaction. Then we would see him eat 5 pieces of pizza and grab candy bars from the vending machine and we would make comments about his diabetes. We then started getting Sugar Free items for these T2 folks when it came to Sno-Cone syrup, soda or candy. What I'm saying is that I, too, was ignorant. I was. While I don't recall making jokes about it, I sure didn't educate myself on it anymore than I had to when I was pregnant with both my children.
That's why I do what I do. That's why I blog, that's why I post on Facebook, that's why I submit photos and answer questions on Twitter, that's why Trey has his own Instagram page with T1 things on it. Because now that I know what diabetes is ... I want to be a small voice in setting the record straight. I want to end the stigma for my child and for all others who suffer from this disease. I want people to know that while yes, most T1's live a long, fulfilled life ... diabetes CAN kill you. That while you're friends cancer is in remission and they are 'cured', my little guy can only pray for a cure for his illness. That while you're sleeping all night long, I'm up checking my kids blood sugar so he doesn't die in the middle of the night due to a high or low sugar. When you're home with the stomach flu wishing you were dead instead ... the stomach flu CAN be deadly to a T1. As your child is running up and down the court with his only worry about how many baskets he will make .... a T1 child is wondering what his sugar is and if he's high/low and it's affecting his game.
You see, friends ... I don't want your sympathy. I will take all the prayers you are willing to give, but don't pity us. It's the hand we were dealt. For reasons unknown and for reasons already known, Type 1 Diabetes is just who we are now. The more I can talk about it, the more facts I can point out, the more people that read my T1D Trey page or read this blog, the more people I am educating. It's not a cake-walk, it's truly not. According to JDRF by the year 2050 over 5 million people will be living with T1D ... if that doesn't scare you just a little, I'd be shocked.
Educate yourself, educate others and please please please help raise awareness to TYPE 1 DIABETES and help me end the stigma that sugars cause diabetes. Please.
I'll be honest, I've never watched his show. I did, however, watch a clip of his show on Facebook one time when he was in tears telling about his newborn son who has a heart condition and how he wanted to bring awareness to it. I had tears as I listened to his story and saw how emotional he was. I remember thinking .... yes, raise awareness. This is perfect! Bad things happen to famous people as well, and these people have the voice/money/following to spread awareness to MILLIONS of people within mere minutes.
Tonight I'm reading posts on my Mod Squad Facebook page and I come across a screen shot of Jimmy Kimmel eating a box of cookies sent to him by Kelly Ripa. He says, "You're sweeter than diabetes."
Now, it's not a secret to those who have talked to me this week, that my mood has been less than pleasant the last couple days. I'm probably PMSing (how's that for TMI?!) since I've eaten a carton of cookies and drank a gallon of chocolate milk since Sunday. Anyway -- this post Jimmy made set me off. Like OOOOOFFFFFFFFFFF.
People!!! THIS IS WHY THE WORLD THINKS DIABETES IS A GOD DAMN JOKE! Normal every day people who are ignorant of T1D drive me crazy. Famous people --- who claim to be big healthcare advocates --- who are ignorant of T1D flat out pisses me off. He has MILLIONS of people following him on Facebook/Twitter/Instagram and MILLIONS of people watch his show .... and now MILLIONS of people are STILL misinformed on T1D. uuugghhhhh
I know, I know ... calm down. Take a deep breath. He doesn't know better. He was trying to be funny. I get offended too easy. I know. Say it .. I know. What I also know is that playing a pancreas for the past year and a half isn't a f'n joke. It's hard work!
WHY is it still OK for people to link cupcakes, donuts, candy bars to diabetes? WHY?????? My friend's 9 month old daughter was diagnosed .... because she ate donuts???? NO! Because her pancreas is an asshole and decided to stop making insulin.
Jimmy Kimmel's son has a major heart issue. As I was scrolling through some of the comments left to him by angry T1 folks, someone posted "Eating all those cookies will give you open heart surgery" and people started attacking this guy for his comment. Saying things like his kid is sick, you jerk! and that's really not funny at all given his baby had open heart surgery. The guy's point was proven .... that as soon as we make fun of something other than diabetes, the world steps in and fights. When will people start fighting for diabetes? When will they stop linking diabetes ... type 1 or type 2 ... to sugar?? WHEN?? It's 2017!!!
Why can't we make fun of childhood cancer? Or any cancer for that matter?? My uncle had bladder cancer ... we sure didn't think that was funny or make jokes about how that could've possibly happened. When someone has brain cancer we don't assume it's because they are dumb or because they are too smart for their own good! Someone gets prostate cancer, breast cancer, ovarian cancer .... we all pray for them. We wear pink the whole month of October. Let me ask you ... do you know what month is National Diabetes month?? Do you know what colors are associated with T1D?
I tell you what ... the day before 3/14/2016 I didn't know much about diabetes. I knew a little from having gestational diabetes but I had no clue what dealing with Type 1 Diabetes was all about. I will be honest and tell you that working with a few people at Wyndham who had Type 2 diabetes got to be 'old' for a lack of a better word. One guy thought he had to eat at 12:00 pm every day or he would have a diabetic reaction. Then we would see him eat 5 pieces of pizza and grab candy bars from the vending machine and we would make comments about his diabetes. We then started getting Sugar Free items for these T2 folks when it came to Sno-Cone syrup, soda or candy. What I'm saying is that I, too, was ignorant. I was. While I don't recall making jokes about it, I sure didn't educate myself on it anymore than I had to when I was pregnant with both my children.
That's why I do what I do. That's why I blog, that's why I post on Facebook, that's why I submit photos and answer questions on Twitter, that's why Trey has his own Instagram page with T1 things on it. Because now that I know what diabetes is ... I want to be a small voice in setting the record straight. I want to end the stigma for my child and for all others who suffer from this disease. I want people to know that while yes, most T1's live a long, fulfilled life ... diabetes CAN kill you. That while you're friends cancer is in remission and they are 'cured', my little guy can only pray for a cure for his illness. That while you're sleeping all night long, I'm up checking my kids blood sugar so he doesn't die in the middle of the night due to a high or low sugar. When you're home with the stomach flu wishing you were dead instead ... the stomach flu CAN be deadly to a T1. As your child is running up and down the court with his only worry about how many baskets he will make .... a T1 child is wondering what his sugar is and if he's high/low and it's affecting his game.
You see, friends ... I don't want your sympathy. I will take all the prayers you are willing to give, but don't pity us. It's the hand we were dealt. For reasons unknown and for reasons already known, Type 1 Diabetes is just who we are now. The more I can talk about it, the more facts I can point out, the more people that read my T1D Trey page or read this blog, the more people I am educating. It's not a cake-walk, it's truly not. According to JDRF by the year 2050 over 5 million people will be living with T1D ... if that doesn't scare you just a little, I'd be shocked.
Educate yourself, educate others and please please please help raise awareness to TYPE 1 DIABETES and help me end the stigma that sugars cause diabetes. Please.
Monday, October 2, 2017
Now is your time to HELP ME
My life is so much different than I thought it would be. I never thought it would be my child living with a disease that required 24/7 care. Jordan and I used to enjoy a night at Lagers having supper and drinks with friends every once in awhile while the kids went over to Nan and Pop's house. You see, back then, Trey could be taken care of by anyone. Back when life was easier.
I won't lie when I tell you that this disease has been really rough on our family. Obviously, Trey suffers the most from it, but the rest of us do as well to a certain extent.
I've had the afternoon to myself today. Jordan is out of town and my mom picked up the kids and took them to their annual Hobby Farm excursion. I needed some time alone ... a small break if you want to call it that. Now let me tell you that my mom called me twice in four hours to ask something regarding Trey's diabetes care. The first call I had to approve a snack and walk her through giving him insulin and the second call was her panicking because his CGM was reading in the 60's and she gave him 4 skittles like I had told her to do before they left. I also spent some time baking - which I LOVE to do. I used to bake all the time as it was like therapy for me. After Trey's dx, I don't bake much because it's not good for him to have it and it's not really fair for us to eat it and not him so I just don't do it. Today I found some good low-carb recipes that I made. Pumpkin muffins and Betty Bagwell's recipe for low-carb chocolate chip cookies. I then made Delanie some no-bake bites with MM's because honestly, she deserves it.
Diabetes is on my mind no matter what I'm doing. There is never a break from it. Even when he's not in my care, it's on my mind. Last weekend I went to the Garth Brooks concert and my alarm for his CGM was going off randomly, so I knew what his sugars were even when I wasn't around him. Grocery shopping consists of more label reading now. Recipes consist of trying to make it as low carb as possible. Hell, our grocery trips are planned around Trey's schedule. Will he need his sugar checked while we are there? Will he go low or high? Today was Sunday School and at 7:45am Trey's CGM decided it had had enough and quit. 30 minutes before we walk out the door for church ... dead. So I checked his sugar (200) and gave him a brownie, knowing this would tie him over and prevent a low during Sunday School. We got home at 10:45, changed out the CGM, ate lunch and at 1:00 Grandma Lori came to take them to the hobby farm.
Friday night we went to the Wings home opener. Of course, I keep my eye on Trey Bagwell more than the other players. What I saw was Bags not acting like his normal, goofy self. I saw a stone faced kid, looking like his mom forced him out on the ice when he didn't have any desire to be there. During the line-up announcement, he walked right by my Trey and didn't give him knuckles or pat his head like he always does. All game, Trey looked as if he was not having fun - and that's not the Trey I'm used to seeing. I am usually saying, "God Bags, focus!!" Trey's dad, Bob, was in attendance. He came and visited with us a bit. I said to Bob, 'I wonder if Trey is running high because he looks really grumpy.' (After the game we got to talk to Bags and I asked him why he looked so crabby and he said he was low most of the game. I KNEW he wasn't right ... I just could tell.) We talked about the pump, food, Twist Cone, hockey and A1C's. Then he said something that bothered me. He said, "Trey doesn't want to be different. That's why he eats junk and why he doesn't want a pump hooked up to him - he wants to look like everyone else." My heart broke. I understood that, but yet I wish it wasn't that way. I wish Bag's wasn't ashamed or embarrassed. I wish he felt comfortable in being 'different' because he IS different. My Trey also has the same feelings sometimes. He hates it when someone asks "what's that?" when they see him pump. I've always tried explaining to Trey that people just don't know - so tell them 'this is my insulin pump because I'm a type 1 diabetic.' and leave it at that. While it doesn't have to be broadcast that Bag's is a T1 -- I want him to own it and rock it and be that inspiration to the little ones. Talk about it. Not just the good, but talk about the bad. It really got me thinking that I know Bags has good days and bad days. I know days he wakes up at 80 and days he wakes up at 250. I know that his teammates know of his T1 but that they don't get it. While it's not my own body going through those feelings of highs and lows, I see it in my own Trey and it is upsetting. I have a little bit of understanding. So for Bags, he basically goes through it on his own. Yep, he can call mom or dad for the comfort, but the task of dealing with it 24/7 is exhausting. Trust me - I know. I'm sure there is a point where lugging around a backpack gets annoying. When packing up your supplies seems daunting. When you're running low on insulin and need to make a stop at the pharmacy before heading out of town for a weekend away is the last thing you want to do. Other kids have other worries and responsibilities - Bagwell's worries are huge. Bagwell's responsibilities are even larger. It's a lot. It's a lot to take in and deal with and I wish there was a way I could make that easier for him or be there to help him through that 2:30am low when he's groggy and his sugar isn't coming up and he feels like he's going to pass out. I just feel responsible for him ... like he's here in my town with my kid's name playing my kid's sport to show me what my kid will go through someday (hopefully) and my motherly instincts kick in and I want to protect him. He's a 19 year old man ... but that kid will always hold a special place in my heart and will always be 'My Bags'. He probably doesn't NEED me - and he knows I'm here if he ever does ... it's my Momma Bear instincts. Poor Bags! ha
I was in the store the other day and I was in line to check-out. The family in the isle over was talking and I heard a kid ask for something when the dad's response was "Yeah, if you want diabetes." I got a lump in my throat, sort of wanted to puke, my heart started racing and I wanted SO BADLY to set the family straight in the nicest way possible but I couldn't. I was almost frozen. My eyes swelled up with tears as I put my items on the belt. People ... THIS is the stigma I'm trying to stop. THIS very reason is the reason why I post on facebook about T1D and why I have a blog and why I vow to educate others because my 4 year old didn't get T1D because he had a Snickers candy bar. When will we start speaking up as T1 parents and people with T1 and raise awareness? It's October which means everything turns pink for Breast Cancer Awareness. Don't get me wrong - I love that everyone knows so much about breast cancer now, but how did it happen? It surly didn't happen because no one talked about it. It happened because someone got it, wanted to help others know the signs and get tested and it blew up and spread like wildfire. I would LOVE for that to be T1D someday. I can't do it alone, friends. I can share share share and educate til I'm blue in the face, but if you don't help me out by sharing posts, spreading the word, knowing the facts, TALKING ABOUT IT .... the world will remain uneducated and think a large bowl of ice cream will give you diabetes.
Do me a favor ... if you read this, find ONE post that I've posted on Facebook regarding T1D, copy and paste it (you cannot SHARE on Facebook if it's from Trey's T1D page as I have it as a closed group. So COPY/PASTE) on your status. If you want to say you're sharing this because of Trey Casanova -- go for it. I have no secrets about my boy being T1D. If you know of someone who would benefit from reading his T1D page -- ask them to send a message to me or "request to join" and I'll happily add them. (Please note I'm currently on a Facebook 'break' for my own sanity but I do log in once in the morning and once at night to check messages b/c of Trey's page and my Norwex page)
I can't do it alone - I need you. People always ask "Can I help with anything?" or "I wish there was something I could do." and I'm telling you right now ... there is .... help me stop the stigma of diabetes. It's an auto-immune disease ... it's not from eating sugar. Together we can bring awareness and hopefully reach ONE person who had it all wrong and will now stand corrected.
Thank you.
I won't lie when I tell you that this disease has been really rough on our family. Obviously, Trey suffers the most from it, but the rest of us do as well to a certain extent.
I've had the afternoon to myself today. Jordan is out of town and my mom picked up the kids and took them to their annual Hobby Farm excursion. I needed some time alone ... a small break if you want to call it that. Now let me tell you that my mom called me twice in four hours to ask something regarding Trey's diabetes care. The first call I had to approve a snack and walk her through giving him insulin and the second call was her panicking because his CGM was reading in the 60's and she gave him 4 skittles like I had told her to do before they left. I also spent some time baking - which I LOVE to do. I used to bake all the time as it was like therapy for me. After Trey's dx, I don't bake much because it's not good for him to have it and it's not really fair for us to eat it and not him so I just don't do it. Today I found some good low-carb recipes that I made. Pumpkin muffins and Betty Bagwell's recipe for low-carb chocolate chip cookies. I then made Delanie some no-bake bites with MM's because honestly, she deserves it.
Diabetes is on my mind no matter what I'm doing. There is never a break from it. Even when he's not in my care, it's on my mind. Last weekend I went to the Garth Brooks concert and my alarm for his CGM was going off randomly, so I knew what his sugars were even when I wasn't around him. Grocery shopping consists of more label reading now. Recipes consist of trying to make it as low carb as possible. Hell, our grocery trips are planned around Trey's schedule. Will he need his sugar checked while we are there? Will he go low or high? Today was Sunday School and at 7:45am Trey's CGM decided it had had enough and quit. 30 minutes before we walk out the door for church ... dead. So I checked his sugar (200) and gave him a brownie, knowing this would tie him over and prevent a low during Sunday School. We got home at 10:45, changed out the CGM, ate lunch and at 1:00 Grandma Lori came to take them to the hobby farm.
Friday night we went to the Wings home opener. Of course, I keep my eye on Trey Bagwell more than the other players. What I saw was Bags not acting like his normal, goofy self. I saw a stone faced kid, looking like his mom forced him out on the ice when he didn't have any desire to be there. During the line-up announcement, he walked right by my Trey and didn't give him knuckles or pat his head like he always does. All game, Trey looked as if he was not having fun - and that's not the Trey I'm used to seeing. I am usually saying, "God Bags, focus!!" Trey's dad, Bob, was in attendance. He came and visited with us a bit. I said to Bob, 'I wonder if Trey is running high because he looks really grumpy.' (After the game we got to talk to Bags and I asked him why he looked so crabby and he said he was low most of the game. I KNEW he wasn't right ... I just could tell.) We talked about the pump, food, Twist Cone, hockey and A1C's. Then he said something that bothered me. He said, "Trey doesn't want to be different. That's why he eats junk and why he doesn't want a pump hooked up to him - he wants to look like everyone else." My heart broke. I understood that, but yet I wish it wasn't that way. I wish Bag's wasn't ashamed or embarrassed. I wish he felt comfortable in being 'different' because he IS different. My Trey also has the same feelings sometimes. He hates it when someone asks "what's that?" when they see him pump. I've always tried explaining to Trey that people just don't know - so tell them 'this is my insulin pump because I'm a type 1 diabetic.' and leave it at that. While it doesn't have to be broadcast that Bag's is a T1 -- I want him to own it and rock it and be that inspiration to the little ones. Talk about it. Not just the good, but talk about the bad. It really got me thinking that I know Bags has good days and bad days. I know days he wakes up at 80 and days he wakes up at 250. I know that his teammates know of his T1 but that they don't get it. While it's not my own body going through those feelings of highs and lows, I see it in my own Trey and it is upsetting. I have a little bit of understanding. So for Bags, he basically goes through it on his own. Yep, he can call mom or dad for the comfort, but the task of dealing with it 24/7 is exhausting. Trust me - I know. I'm sure there is a point where lugging around a backpack gets annoying. When packing up your supplies seems daunting. When you're running low on insulin and need to make a stop at the pharmacy before heading out of town for a weekend away is the last thing you want to do. Other kids have other worries and responsibilities - Bagwell's worries are huge. Bagwell's responsibilities are even larger. It's a lot. It's a lot to take in and deal with and I wish there was a way I could make that easier for him or be there to help him through that 2:30am low when he's groggy and his sugar isn't coming up and he feels like he's going to pass out. I just feel responsible for him ... like he's here in my town with my kid's name playing my kid's sport to show me what my kid will go through someday (hopefully) and my motherly instincts kick in and I want to protect him. He's a 19 year old man ... but that kid will always hold a special place in my heart and will always be 'My Bags'. He probably doesn't NEED me - and he knows I'm here if he ever does ... it's my Momma Bear instincts. Poor Bags! ha
I was in the store the other day and I was in line to check-out. The family in the isle over was talking and I heard a kid ask for something when the dad's response was "Yeah, if you want diabetes." I got a lump in my throat, sort of wanted to puke, my heart started racing and I wanted SO BADLY to set the family straight in the nicest way possible but I couldn't. I was almost frozen. My eyes swelled up with tears as I put my items on the belt. People ... THIS is the stigma I'm trying to stop. THIS very reason is the reason why I post on facebook about T1D and why I have a blog and why I vow to educate others because my 4 year old didn't get T1D because he had a Snickers candy bar. When will we start speaking up as T1 parents and people with T1 and raise awareness? It's October which means everything turns pink for Breast Cancer Awareness. Don't get me wrong - I love that everyone knows so much about breast cancer now, but how did it happen? It surly didn't happen because no one talked about it. It happened because someone got it, wanted to help others know the signs and get tested and it blew up and spread like wildfire. I would LOVE for that to be T1D someday. I can't do it alone, friends. I can share share share and educate til I'm blue in the face, but if you don't help me out by sharing posts, spreading the word, knowing the facts, TALKING ABOUT IT .... the world will remain uneducated and think a large bowl of ice cream will give you diabetes.
Do me a favor ... if you read this, find ONE post that I've posted on Facebook regarding T1D, copy and paste it (you cannot SHARE on Facebook if it's from Trey's T1D page as I have it as a closed group. So COPY/PASTE) on your status. If you want to say you're sharing this because of Trey Casanova -- go for it. I have no secrets about my boy being T1D. If you know of someone who would benefit from reading his T1D page -- ask them to send a message to me or "request to join" and I'll happily add them. (Please note I'm currently on a Facebook 'break' for my own sanity but I do log in once in the morning and once at night to check messages b/c of Trey's page and my Norwex page)
I can't do it alone - I need you. People always ask "Can I help with anything?" or "I wish there was something I could do." and I'm telling you right now ... there is .... help me stop the stigma of diabetes. It's an auto-immune disease ... it's not from eating sugar. Together we can bring awareness and hopefully reach ONE person who had it all wrong and will now stand corrected.
Thank you.
Tuesday, September 26, 2017
Vocabulary Lesson
Awhile back I would post "word of the day" on Trey's Facebook page. The diabetes lingo can get confusing. I was trying to make a file where it would be saved, but no luck. So I thought I would make a post here ... you can come here and look up words whenever.
504 - A plan developed to meet the requirements of the Rehabilitation Act of 1973 that prohibits discrimination against people with disabilities. Section 504, applicable to all public and private schools that receive federal funds, allows for different accommodations to be agreed upon to meet the special needs of a student with diabetes.
HEMOGLOBIN A1C - Glycated hemoglobin (red blood cells with glucose attached). Normal levels of glucose produce a normal amount of glycated hemoglobin. As the average amount of plasma (blood) glucose increases, the glycated hemoglobin increases in a predictable way. This serves as a marker for average blood glucose levels over the previous three months before the measurement as this is the lifespan of red blood cells.
A1C TEST - A test that shows the average amount of sugar in the blood for the past 2 to 3 months. This test helps your doctor to see if your average blood sugar is where it needs to be. A1C tests may also be used to assess the effectiveness of treatment(s) recommended and make adjustment(s) to treatment(s).
ALPHA CELL - A type of cell in the pancreas. Alpha cells make and release a hormone called glucagon. The body sends a signal to the alpha cells to make glucagon when blood glucose falls too low. Then glucagon reaches the liver where it tells the liver to release glucose into the blood for energy.
AMYLIN - A hormone produced by pancreatic beta cells that is co‐created with insulin and works synergistically with insulin to lower blood sugar level. Amylin plays a role in glycemic regulation by slowing gastric emptying and promoting satiety, thereby preventing post‐prandial spikes in blood glucose level.
ANTIBODIES - Proteins made by the body to protect itself from foreign substances such as bacteria or viruses. People get type 1 diabetes when their bodies make antibodies that destroy the body’s own insulin-making beta cells.
AUTOIMMUNE DISEASE - An autoimmune disease is a condition arising from an abnormal internal response to a normal body part.
BAD SITE - The most common problem that occurs with pump use is a bad infusion site. The infusion site is where the very thin Teflon, stainless steel, or plastic cannula, that delivers the insulin to the tissue just under the skin, is inserted.
BASAL INSULIN - The amount of insulin that is needed to maintain stable blood glucose levels in between meals and overnight. Also referred to as Background Insulin.
BASAL RATE/DELIVERY - The rate at which a continuous, low level of insulin is delivered.
BETA CELL - A cell that makes insulin. Beta cells are located in the Islets of Langerhans which are irregularly shaped patches of endocrine tissue located within the pancreas
BLEEDER - A finger that continues bleeding after a blood glucose test. Also used when an insulin needle or pump infusion site is pulled out and causes excessive bleeding. Also applicable to a CGM sensor site that shows blood under the sensor.
BLOOD GLUCOSE METER (glucometer) - A medical device for determining the approximate concentration of glucose in the blood.
BOLUS - A bolus dose is insulin that is specifically taken at meal times to keep blood glucose levels under control following a meal. Bolus insulin needs to act quickly therefore short acting insulin or rapid acting insulin will be used.
CANNULA - Part of an infusion set. A tube inserted into the body with the purpose to either deliver or remove fluid.
CDE - Certified Diabetes Educator.
CGM - Continuous Glucose Monitor
COMPRESSION LOW - A low reading on the continuous glucose monitor receiver due to pressure applied to the sensor/transmitter site, this typically occurs during sleep and is not an indicator of a true low blood sugar.
CORRECTION - An additional amount of insulin delivered to counteract a high blood glucose reading. Can be done in conjunction with meal bolus or independently.
CORRECTION FACTOR/RATIO - A Correction Factor (sometimes called insulin sensitivity ratio), is how much 1 unit of rapid acting insulin will generally lower your blood glucose over 2 to 4 hours when you are in a fasting or pre-meal state.
C-PEPTIDE - A substance the pancreas releases into the bloodstream in equal amounts to insulin.
C-PEPTIDE TEST - test that shows how much insulin the body is making by measuring C-peptide levels.
DAWN PHENOMENON - The dawn phenomenon, also called the dawn effect, is the term used to describe an abnormal early-morning increase in blood sugar (glucose) — usually between 2 and 8 a.m. Dawn Phenomenon occurs when hormones (including cortisol, glucagon, epinephrine) are released by the body, causing the liver to release glucose.
D-BAG - Diabetes supply bag that goes with you everywhere.
DEX - Short for Dexcom continuous glucose monitoring system.
DIAVERSARY - Anniversary of the day a person was diagnosed with diabetes, celebrating living a full and wonderful life despite the diagnosis. A celebration of life.
DKA (Diabetic Ketoacidosis) - An emergency condition in which extremely high blood glucose levels, along with a lack of insulin, result in the breakdown of body fat for energy and an accumulation of ketones in the blood and urine. Signs of DKA are nausea and vomiting, stomach pain, fruity breath odor and rapid breathing.
DOSING - Incremental increase in insulin dosage to a level that provides the optima effect.
DUAL WAVE BOLUS - Insulin delivery option on some insulin pumps. A Dual Wave bolus delivers a combination of an immediate normal bolus followed by a Square Wave bolus. The Dual Wave bolus should be used for high fat, high carbohydrate meals.Whenever we eat foods higher in fat, it takes our bodies longer to digest those foods. Therefore, we do not need to take the bolus all at once, but to spread the bolus out over time to mimic normal pancreatic function and match the time that it is taking our bodies to digest the food.
DX / DXD - Diagnosis / Diagnosed.
ENDO - A pediatric endocrinologist is a doctor who specializes in the diagnosis and treatment of children with diseases of the endocrine system, such as Type 1 Diabetes and growth disorders.
EXTENDED BOLUS - Insulin Delivery option on some insulin pumps. The bolus is delivered in small quantities over an extended, chosen period of time. Depending on the insulin pump, this type is called delayed or extended bolus or sometimes also referred to as the "pizza" bolus
FAST ACTING GLUCOSE - A form of carbohydrate that will raise blood glucose levels quickly. The term “fast-acting carbohydrate” is generally used in discussions of treating hypoglycemia, or low blood sugar. (juice, smarties, skittles)
GENTEEL - The Genteel® Lancet Device uses it’s Butterfly Touch Technology® to get the perfect drop of test blood with reduced pain and discomfort.
GRIF GRIP - Adhesive patches that will help secure your devices from impacts that would normally disengage the device.
GLUCAGON - A hormone formed in the pancreas that promotes the breakdown of glycogen to glucose in the liver which stimulates an increase in blood sugar levels, thus opposing the action of insulin; a polypeptide hormone, produced in the pancreas by the islets of Langerhans, that stimulates the release of glucose into the blood.
GLUCAGON EMERGENCY KIT - Glucagon rescue is the emergency injection of glucagon in case of severe diabetic hypoglycemia. It is needed during seizures and/or unconsciousness by an insulin user who is unable. at that point, to help themselves. Glucagon will facilitate the release of stored glucose back into the bloodstream, raising the blood glucose level.
GLYCEMIC INDEX - A system that ranks foods on a scale from 1 to 100 based on their effect on blood-sugar levels.
GLYCOGEN STORES - Glycogen, the major reservoir of carbohydrate in the body, is comprised of long chain polymers of glucose molecules. The body stores approximately 450-550 grams of glycogen within the muscle and liver for energy during exercise.
HONEYMOON (HONEYMOON PERIOD) - The honeymoon period usually occurs after the child/young adult/adult is diagnosed with type 1 diabetes and has begun insulin treatment. After several weeks to several months (the time is variable), the person with diabetes starts to produce his/her own insulin (endogenous insulin) secondary to some recovery of pancreatic islet cells. Honeymoon periods can last from two weeks up to 2 to 3 years. It is different for each individual. Sometimes, if the diabetes diagnosis is determined extremely early (with less destruction of beta cells), the honeymoon period can last even longer. NOTE: Some people may never experience a Honeymoon Period.
HYPERGLYCEMIA - A condition in which the blood contains an abnormally high level of glucose.
HYPOGLYCEMIA - Too low a level of glucose n the blood. This can when there is too much insulin ingested or injected with too little food.
I:C - Insulin to Carbohydrate ratio. The insulin to carbohydrate ratio indicates how many carbohydrates one unit of insulin will provide coverage for.
INFUSION SET - The combination of thin plastic tubing and a stainless steel needle, Teflon, or plastic cannula used with an insulin pump.
INSULIN PUMP - An insulin pump is a medical device used for the administration of insulin in the treatment of Type 1 Diabetes, also known as continuous subcutaneous insulin infusion therapy. The device configuration may vary depending on design.
(ISF) INSULIN SENSITIVITY FACTOR - The amount of blood sugar measured in mg/dL that is lowered by one-unit of rapid-acting or regular insulin. This is used to calculate the amount of insulin a person with diabetes needs to return blood sugar to within the targeted blood sugar range.
IOB - Insulin on Board, also referred to as Bolus on Board or Active Insulin, tells how many units of rapid insulin are still working in the body. This helps in deciding whether more insulin or more carbohydrate is needed.
ISLET CELL AUTOANTIBODIES - Proteins found in the blood of people newly diagnosed with Type 1 diabetes. They are also found in people who may be developing Type 1 diabetes. The presence of ICA indicates that the body's immune system has been damaging beta cells in the pancreas.
ISLET CELLS - Groups of cells located in the pancreas that make hormones that help the body break down and use food. For example, alpha cells make glucagon and beta cells make insulin. Also called Islets of Langerhans (LANG-er-hahns).
IV PREP - IV Prep Antiseptic Wipes by Smith & Nephew. An antiseptic and adhesive wipe for preparation of the skin prior to an pump or CGM insertion.
KETONES - The human body normally runs on glucose that's produced when the body breaks down carbohydrates. But when your body doesn't have enough glucose or insulin to use the glucose, your body starts breaking down fats for energy. Ketones are byproducts of this breakdown. ... Ketones can make your blood acidic.
LANCET - A spring-loaded device used to prick the skin with a small needle to obtain a drop of blood for blood glucose testing.
LIPOHYPERTROPHY - An overgrowth of fatty tissue caused by not changing infusion sites.
LIVER DUMP - The liver is like your own personal EMT; when it senses that your blood sugar is too low, it "dumps" some glycogen into your system to raise the blood sugar levels.
MDI - Multiple Daily Injections.
MINI GLUC - Mini-dose glucagon rescue, using subcutaneous injections, is effective in managing type 1 diabetes during episodes of impending hypoglycemia due to gastroenteritis or poor oral intake of carbohydrate. Mini Gluc uses a smaller amount of the glucagon rescue.
MOD - Mother of a T1 Diabetic
MODUCATE - To correct someone's misconception or enlighten someone about T1D based on your gained knowledge as a MOD.
PDM - Personal Diabetes Manager, specifically the device used to operate the OmniPod insulin delivery system. https://www.myomnipod.com/
POD - Wearable tubeless insulin delivery system developed my Insulet Corporation. The pod is half of the OmniPod insulin delivery system. The pod is controlled by the PDM.
POKER - Another name for a Lancet device which is used to prick the skin with a small needle to obtain a drop of blood for blood glucose monitoring.
PRE-BOLUS - Delivering an insulin bolus prior to a meal.
RECEIVER - The potion of a continuous glucose monitoring system that receives data from the transmitter that is connected to the sensor worn by the T1D via Bluetooth. The receiver displays glucose levels and trends. It is the size and weight of a cell phone.
SENSOR - The sensor is a flexible round electrode wire that goes just under the skin to read glucose levels in tissue fluid. It attaches to the skin with an adhesive patch.
SPIKE - A rapid rise in blood sugar level.
SQUARE WAVE BOLUS - Square Wave bolus delivers a bolus evenly over a period of time (20 minutes to 8 hours). This bolus can be used for insulin delivery when you have eaten a long meal with extended snacking. It can also be useful if you have delayed food digestion due to gastroparesis or meals high in fat.
SUGAR SURFING - A method of blood sugar management that depends of frequent user input and data analysis to minimize roller coaster blood sugars and stay in the target range.
SWAG - Scientific Wild Ass Guess. This term means that you are using logic, experience and guessing to figure out the amount of carbs in a meal so that you can take a wild guess at the amount of insulin to give.
TRANSMITTER - The transmitter is a little device that snaps into the sensor patch of the CGM; it sends information via wireless radio frequency to the receiver every 5 minutes.
UNICORN - Just like the mythical magical creature, a perfect 100 on the meter is referred to as a unicorn.Another type of unicorn can happen when the meter and the CGM display the same number.
There you have it! Reference it often
504 - A plan developed to meet the requirements of the Rehabilitation Act of 1973 that prohibits discrimination against people with disabilities. Section 504, applicable to all public and private schools that receive federal funds, allows for different accommodations to be agreed upon to meet the special needs of a student with diabetes.
HEMOGLOBIN A1C - Glycated hemoglobin (red blood cells with glucose attached). Normal levels of glucose produce a normal amount of glycated hemoglobin. As the average amount of plasma (blood) glucose increases, the glycated hemoglobin increases in a predictable way. This serves as a marker for average blood glucose levels over the previous three months before the measurement as this is the lifespan of red blood cells.
A1C TEST - A test that shows the average amount of sugar in the blood for the past 2 to 3 months. This test helps your doctor to see if your average blood sugar is where it needs to be. A1C tests may also be used to assess the effectiveness of treatment(s) recommended and make adjustment(s) to treatment(s).
ALPHA CELL - A type of cell in the pancreas. Alpha cells make and release a hormone called glucagon. The body sends a signal to the alpha cells to make glucagon when blood glucose falls too low. Then glucagon reaches the liver where it tells the liver to release glucose into the blood for energy.
AMYLIN - A hormone produced by pancreatic beta cells that is co‐created with insulin and works synergistically with insulin to lower blood sugar level. Amylin plays a role in glycemic regulation by slowing gastric emptying and promoting satiety, thereby preventing post‐prandial spikes in blood glucose level.
ANTIBODIES - Proteins made by the body to protect itself from foreign substances such as bacteria or viruses. People get type 1 diabetes when their bodies make antibodies that destroy the body’s own insulin-making beta cells.
AUTOIMMUNE DISEASE - An autoimmune disease is a condition arising from an abnormal internal response to a normal body part.
BAD SITE - The most common problem that occurs with pump use is a bad infusion site. The infusion site is where the very thin Teflon, stainless steel, or plastic cannula, that delivers the insulin to the tissue just under the skin, is inserted.
BASAL INSULIN - The amount of insulin that is needed to maintain stable blood glucose levels in between meals and overnight. Also referred to as Background Insulin.
BASAL RATE/DELIVERY - The rate at which a continuous, low level of insulin is delivered.
BETA CELL - A cell that makes insulin. Beta cells are located in the Islets of Langerhans which are irregularly shaped patches of endocrine tissue located within the pancreas
BLEEDER - A finger that continues bleeding after a blood glucose test. Also used when an insulin needle or pump infusion site is pulled out and causes excessive bleeding. Also applicable to a CGM sensor site that shows blood under the sensor.
BLOOD GLUCOSE METER (glucometer) - A medical device for determining the approximate concentration of glucose in the blood.
BOLUS - A bolus dose is insulin that is specifically taken at meal times to keep blood glucose levels under control following a meal. Bolus insulin needs to act quickly therefore short acting insulin or rapid acting insulin will be used.
CANNULA - Part of an infusion set. A tube inserted into the body with the purpose to either deliver or remove fluid.
CDE - Certified Diabetes Educator.
CGM - Continuous Glucose Monitor
COMPRESSION LOW - A low reading on the continuous glucose monitor receiver due to pressure applied to the sensor/transmitter site, this typically occurs during sleep and is not an indicator of a true low blood sugar.
CORRECTION - An additional amount of insulin delivered to counteract a high blood glucose reading. Can be done in conjunction with meal bolus or independently.
CORRECTION FACTOR/RATIO - A Correction Factor (sometimes called insulin sensitivity ratio), is how much 1 unit of rapid acting insulin will generally lower your blood glucose over 2 to 4 hours when you are in a fasting or pre-meal state.
C-PEPTIDE - A substance the pancreas releases into the bloodstream in equal amounts to insulin.
C-PEPTIDE TEST - test that shows how much insulin the body is making by measuring C-peptide levels.
DAWN PHENOMENON - The dawn phenomenon, also called the dawn effect, is the term used to describe an abnormal early-morning increase in blood sugar (glucose) — usually between 2 and 8 a.m. Dawn Phenomenon occurs when hormones (including cortisol, glucagon, epinephrine) are released by the body, causing the liver to release glucose.
D-BAG - Diabetes supply bag that goes with you everywhere.
DEX - Short for Dexcom continuous glucose monitoring system.
DIAVERSARY - Anniversary of the day a person was diagnosed with diabetes, celebrating living a full and wonderful life despite the diagnosis. A celebration of life.
DKA (Diabetic Ketoacidosis) - An emergency condition in which extremely high blood glucose levels, along with a lack of insulin, result in the breakdown of body fat for energy and an accumulation of ketones in the blood and urine. Signs of DKA are nausea and vomiting, stomach pain, fruity breath odor and rapid breathing.
DOSING - Incremental increase in insulin dosage to a level that provides the optima effect.
DUAL WAVE BOLUS - Insulin delivery option on some insulin pumps. A Dual Wave bolus delivers a combination of an immediate normal bolus followed by a Square Wave bolus. The Dual Wave bolus should be used for high fat, high carbohydrate meals.Whenever we eat foods higher in fat, it takes our bodies longer to digest those foods. Therefore, we do not need to take the bolus all at once, but to spread the bolus out over time to mimic normal pancreatic function and match the time that it is taking our bodies to digest the food.
DX / DXD - Diagnosis / Diagnosed.
ENDO - A pediatric endocrinologist is a doctor who specializes in the diagnosis and treatment of children with diseases of the endocrine system, such as Type 1 Diabetes and growth disorders.
EXTENDED BOLUS - Insulin Delivery option on some insulin pumps. The bolus is delivered in small quantities over an extended, chosen period of time. Depending on the insulin pump, this type is called delayed or extended bolus or sometimes also referred to as the "pizza" bolus
FAST ACTING GLUCOSE - A form of carbohydrate that will raise blood glucose levels quickly. The term “fast-acting carbohydrate” is generally used in discussions of treating hypoglycemia, or low blood sugar. (juice, smarties, skittles)
GENTEEL - The Genteel® Lancet Device uses it’s Butterfly Touch Technology® to get the perfect drop of test blood with reduced pain and discomfort.
GRIF GRIP - Adhesive patches that will help secure your devices from impacts that would normally disengage the device.
GLUCAGON - A hormone formed in the pancreas that promotes the breakdown of glycogen to glucose in the liver which stimulates an increase in blood sugar levels, thus opposing the action of insulin; a polypeptide hormone, produced in the pancreas by the islets of Langerhans, that stimulates the release of glucose into the blood.
GLUCAGON EMERGENCY KIT - Glucagon rescue is the emergency injection of glucagon in case of severe diabetic hypoglycemia. It is needed during seizures and/or unconsciousness by an insulin user who is unable. at that point, to help themselves. Glucagon will facilitate the release of stored glucose back into the bloodstream, raising the blood glucose level.
GLYCEMIC INDEX - A system that ranks foods on a scale from 1 to 100 based on their effect on blood-sugar levels.
GLYCOGEN STORES - Glycogen, the major reservoir of carbohydrate in the body, is comprised of long chain polymers of glucose molecules. The body stores approximately 450-550 grams of glycogen within the muscle and liver for energy during exercise.
HONEYMOON (HONEYMOON PERIOD) - The honeymoon period usually occurs after the child/young adult/adult is diagnosed with type 1 diabetes and has begun insulin treatment. After several weeks to several months (the time is variable), the person with diabetes starts to produce his/her own insulin (endogenous insulin) secondary to some recovery of pancreatic islet cells. Honeymoon periods can last from two weeks up to 2 to 3 years. It is different for each individual. Sometimes, if the diabetes diagnosis is determined extremely early (with less destruction of beta cells), the honeymoon period can last even longer. NOTE: Some people may never experience a Honeymoon Period.
HYPERGLYCEMIA - A condition in which the blood contains an abnormally high level of glucose.
HYPOGLYCEMIA - Too low a level of glucose n the blood. This can when there is too much insulin ingested or injected with too little food.
I:C - Insulin to Carbohydrate ratio. The insulin to carbohydrate ratio indicates how many carbohydrates one unit of insulin will provide coverage for.
INFUSION SET - The combination of thin plastic tubing and a stainless steel needle, Teflon, or plastic cannula used with an insulin pump.
INSULIN PUMP - An insulin pump is a medical device used for the administration of insulin in the treatment of Type 1 Diabetes, also known as continuous subcutaneous insulin infusion therapy. The device configuration may vary depending on design.
(ISF) INSULIN SENSITIVITY FACTOR - The amount of blood sugar measured in mg/dL that is lowered by one-unit of rapid-acting or regular insulin. This is used to calculate the amount of insulin a person with diabetes needs to return blood sugar to within the targeted blood sugar range.
IOB - Insulin on Board, also referred to as Bolus on Board or Active Insulin, tells how many units of rapid insulin are still working in the body. This helps in deciding whether more insulin or more carbohydrate is needed.
ISLET CELL AUTOANTIBODIES - Proteins found in the blood of people newly diagnosed with Type 1 diabetes. They are also found in people who may be developing Type 1 diabetes. The presence of ICA indicates that the body's immune system has been damaging beta cells in the pancreas.
ISLET CELLS - Groups of cells located in the pancreas that make hormones that help the body break down and use food. For example, alpha cells make glucagon and beta cells make insulin. Also called Islets of Langerhans (LANG-er-hahns).
IV PREP - IV Prep Antiseptic Wipes by Smith & Nephew. An antiseptic and adhesive wipe for preparation of the skin prior to an pump or CGM insertion.
KETONES - The human body normally runs on glucose that's produced when the body breaks down carbohydrates. But when your body doesn't have enough glucose or insulin to use the glucose, your body starts breaking down fats for energy. Ketones are byproducts of this breakdown. ... Ketones can make your blood acidic.
LANCET - A spring-loaded device used to prick the skin with a small needle to obtain a drop of blood for blood glucose testing.
LIPOHYPERTROPHY - An overgrowth of fatty tissue caused by not changing infusion sites.
LIVER DUMP - The liver is like your own personal EMT; when it senses that your blood sugar is too low, it "dumps" some glycogen into your system to raise the blood sugar levels.
MDI - Multiple Daily Injections.
MINI GLUC - Mini-dose glucagon rescue, using subcutaneous injections, is effective in managing type 1 diabetes during episodes of impending hypoglycemia due to gastroenteritis or poor oral intake of carbohydrate. Mini Gluc uses a smaller amount of the glucagon rescue.
MOD - Mother of a T1 Diabetic
MODUCATE - To correct someone's misconception or enlighten someone about T1D based on your gained knowledge as a MOD.
PDM - Personal Diabetes Manager, specifically the device used to operate the OmniPod insulin delivery system. https://www.myomnipod.com/
POD - Wearable tubeless insulin delivery system developed my Insulet Corporation. The pod is half of the OmniPod insulin delivery system. The pod is controlled by the PDM.
POKER - Another name for a Lancet device which is used to prick the skin with a small needle to obtain a drop of blood for blood glucose monitoring.
PRE-BOLUS - Delivering an insulin bolus prior to a meal.
RECEIVER - The potion of a continuous glucose monitoring system that receives data from the transmitter that is connected to the sensor worn by the T1D via Bluetooth. The receiver displays glucose levels and trends. It is the size and weight of a cell phone.
SENSOR - The sensor is a flexible round electrode wire that goes just under the skin to read glucose levels in tissue fluid. It attaches to the skin with an adhesive patch.
SPIKE - A rapid rise in blood sugar level.
SQUARE WAVE BOLUS - Square Wave bolus delivers a bolus evenly over a period of time (20 minutes to 8 hours). This bolus can be used for insulin delivery when you have eaten a long meal with extended snacking. It can also be useful if you have delayed food digestion due to gastroparesis or meals high in fat.
SUGAR SURFING - A method of blood sugar management that depends of frequent user input and data analysis to minimize roller coaster blood sugars and stay in the target range.
SWAG - Scientific Wild Ass Guess. This term means that you are using logic, experience and guessing to figure out the amount of carbs in a meal so that you can take a wild guess at the amount of insulin to give.
TRANSMITTER - The transmitter is a little device that snaps into the sensor patch of the CGM; it sends information via wireless radio frequency to the receiver every 5 minutes.
UNICORN - Just like the mythical magical creature, a perfect 100 on the meter is referred to as a unicorn.Another type of unicorn can happen when the meter and the CGM display the same number.
There you have it! Reference it often
Wednesday, September 20, 2017
The Reality of it ...
I've been crying all morning. I saw posts last night on Facebook that Mr. Todd Kolden passed away suddenly. While I've never met the man, his wife, Robi, is the music teacher at my kids' school. Last year during our 504 Meeting, she told me her husband was a T1 so she knew a little about the disease. So when I saw posts, I had hoped his passing wasn't related to diabetes. Sadly, I learned today, that in fact, it was.
Due to Trey being high and having large ketones today, Jordan ran to the school to pick him up. The principal told Jordan about Todd. Apparently he was on vacation and didn't realize his pump had a malfunction and by the time he went to the hospital, his sugar was 1200 and he was in DKA.
Friends ... this could be Trey. This could be Trey Bagwell. This could be Uncle Jeff. This could be anyone that you know who is a Type 1 diabetic. Thankfully, the three men mentioned above all have the CGM -- which apparently Todd didn't have. (insert my gripe about insurance companies saying the CGM isn't medically necessary and refusing to pay for it) If Todd had a CGM, he would probably be here today. I just can't stop thinking about it.
My own Trey had large ketones and high sugar today - and actually 7 hours last night. After changing out his pump this morning and increasing his insulin - he came down in no-time. Trey too had a pump malfunction and if we didn't have the CGM telling us his sugar was 300 this morning ... we wouldn't have known. If he would've went to school all day - by the time he got home I cannot imagine what state he would be in. He didn't have any symptoms of DKA other than high sugars.
DKA usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours. Early symptoms include the following:
Type 1 Diabetes can be fatal. Most people don't associate T1D with death. They might think of sweet foods and missing limbs or blindness. If Type 1 Diabetics don't get insulin - they die.
The pump is wonderful. I'm glad we have it. It doesn't just save Trey, it could also kill him. It's a machine - it has malfunctions. The tubes can get kinked. The cannula inserted into his belly could get bent, not allowing insulin to flow properly.
Many people assume that because you have a pump, you're in the clear. Not true. Also, if you give yourself shots, you could still encounter issues with things like air-bubbles.
We need a cure. We need to educate people on the truth about Type 1 Diabetes. That it CAN be fatal and even the very 'best' diabetic can lose his/her life to the disease. The person who watches their sugars carefully can go to bed at 77 blood sugar and never wake up again because the pump didn't do what it was supposed to, you didn't hear your CGM alarm or you don't have the CGM, and you died due to DKA. This was Trey guys ... Trey went to bed at sugar of 77 and at midnight he was 300. If he didn't have a CGM, I would get up once around 2pm to check his blood sugar and I can't imagine what I would've found. It could've been too late.
Reality. No sugar coating (no pun intended) it -- Type 1 Diabetes can kill you. It can kill my Treybaby. I'll never stop worrying - ever - and I'll never stop praying for a cure - ever - and I'll educate people and talk about T1 until I'm blue in the face - forever.
Go hug your husband/wife, son/daughter and loved ones .... Mrs Kolden is a widow because T1 took her husband from her. F.U. T1D.
Due to Trey being high and having large ketones today, Jordan ran to the school to pick him up. The principal told Jordan about Todd. Apparently he was on vacation and didn't realize his pump had a malfunction and by the time he went to the hospital, his sugar was 1200 and he was in DKA.
Friends ... this could be Trey. This could be Trey Bagwell. This could be Uncle Jeff. This could be anyone that you know who is a Type 1 diabetic. Thankfully, the three men mentioned above all have the CGM -- which apparently Todd didn't have. (insert my gripe about insurance companies saying the CGM isn't medically necessary and refusing to pay for it) If Todd had a CGM, he would probably be here today. I just can't stop thinking about it.
My own Trey had large ketones and high sugar today - and actually 7 hours last night. After changing out his pump this morning and increasing his insulin - he came down in no-time. Trey too had a pump malfunction and if we didn't have the CGM telling us his sugar was 300 this morning ... we wouldn't have known. If he would've went to school all day - by the time he got home I cannot imagine what state he would be in. He didn't have any symptoms of DKA other than high sugars.
DKA usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours. Early symptoms include the following:
- Thirst or a very dry mouth
- Frequent urination
- High blood glucose (blood sugar) levels
- High levels of ketones in the urine
- Constantly feeling tired
- Dry or flushed skin
- Nausea, vomiting, or abdominal pain
(Vomiting can be caused by many illnesses, not just ketoacidosis. If vomiting continues for more than 2 hours, contact your health care provider.) - Difficulty breathing
- Fruity odor on breath
- A hard time paying attention, or confusion
What Causes DKA?
Here are three basic reasons for moderate or large amounts of ketones:- Not enough insulin
Maybe you did not inject enough insulin. Or your body could need more insulin than usual because of illness. - Not enough food
When you're sick, you often don't feel like eating, sometimes resulting in high ketone levels. High levels may also occur when you miss a meal. - Insulin reaction (low blood glucose)
If testing shows high ketone levels in the morning, you may have had an insulin reaction while asleep.
Type 1 Diabetes can be fatal. Most people don't associate T1D with death. They might think of sweet foods and missing limbs or blindness. If Type 1 Diabetics don't get insulin - they die.
The pump is wonderful. I'm glad we have it. It doesn't just save Trey, it could also kill him. It's a machine - it has malfunctions. The tubes can get kinked. The cannula inserted into his belly could get bent, not allowing insulin to flow properly.
Many people assume that because you have a pump, you're in the clear. Not true. Also, if you give yourself shots, you could still encounter issues with things like air-bubbles.
We need a cure. We need to educate people on the truth about Type 1 Diabetes. That it CAN be fatal and even the very 'best' diabetic can lose his/her life to the disease. The person who watches their sugars carefully can go to bed at 77 blood sugar and never wake up again because the pump didn't do what it was supposed to, you didn't hear your CGM alarm or you don't have the CGM, and you died due to DKA. This was Trey guys ... Trey went to bed at sugar of 77 and at midnight he was 300. If he didn't have a CGM, I would get up once around 2pm to check his blood sugar and I can't imagine what I would've found. It could've been too late.
Reality. No sugar coating (no pun intended) it -- Type 1 Diabetes can kill you. It can kill my Treybaby. I'll never stop worrying - ever - and I'll never stop praying for a cure - ever - and I'll educate people and talk about T1 until I'm blue in the face - forever.
Go hug your husband/wife, son/daughter and loved ones .... Mrs Kolden is a widow because T1 took her husband from her. F.U. T1D.
Friday, September 1, 2017
The Big Questions
I've heard it several times in the last year and a half. "God sure knew what he was doing when he made you Trey's mommy." I appreciate the words - truly - but sometimes I wonder what that even really means. I mean, it's almost a punishment, isn't it? Like a baby being born with cancer ... God picked that mom to have that particular child, right? So why would God pick a death sentence and so much heartache for that poor mom? Does God give us diseases and illness? I mean, aren't we taught that God creates everything ... So did he create diabetes as well?
Tough questions. Questions I ask sometimes and questions I wonder about, but I don't think anyone really knows the answer to those. We all have a theory or our own beliefs, but no one can say with 100% certainty that God did or did not create this bad stuff.
What I do know is that I am Trey's mom and Trey does have Type 1 Diabetes and we do fight it every single day. I know that I give 100% to that child and his illness and I know that it leaves me crabby, tired, defeated and boring. I know that the disease is in control. I know that no matter what I do, I won't ever be able to take it away from him. I know that I worry myself sick because of T1. I sometimes think about him going out on his first date, his first vacation away without me, his first week of college and his children some day.
Before Trey was diagnosed, I had made the comment to my best friend that I sometimes wonder if Trey would have a short life ... I wondered if he would die at a young age. Trey is a kid who has so much life in him. People are drawn to him like a bee to a flower. We have taken him to hockey games and races in different states and he's always either on the JumboTron's, in photographs or making new important friends. It sometimes blows my mind. What scared me is that when you would read of younger children who die ... Their obits were never about how the kid didn't do anything, no one liked him, he kept to himself. It was always about how full of life the kid was, always smiling and the star player for the team. Always! I see that in my Trey.
His diagnoses scared me for so many reasons and I'm not kidding when I say one of the first things that popped into my mind after hearing 'Type 1 Diabetes' was this is it ... He's doing to die young. There is still that fear, I won't lie. But I think after having a better understanding of T1 I don't think of it as often as I used to.
We were given this for a reason. I firmly believe one of those reasons was to educate other people. While I'm very much an introverted person, I am not afraid to speak up and be very articulate when it comes to something I know well and something I am passionate about. (People were surprised I sold Norwex because I had to get up in front of people and talk) I don't have this blog or Trey's T1D Facebook page for sympathy. I have those so I can educate people. I need people who read that page, to inform others. Stop the stigma that T1 = obesity and sugar.
I also am a self proclaimed control freak (sometimes! Over certain things anyway). I can't control diabetes. I've been shown who really is in control of things. As much as I try to do the right things and carefully count carbs and administer the perfect amount of insulin ... diabetes is going to do what diabetes wants.
I was going through some personal struggles when Trey was diagnosed. Without getting into details, I will say that his diagnoses came at the perfect time. I had just lost my job at Wyndham due to the relocation; I was going to be opening my own daycare; and I could be home to take care of him those first months. Without taking anything away from his daycare provider at the time, there is no way she could've handled what T1 demanded.
I've always been a faithful person, understanding that everything happens for a reason. I trusted God to help guide us through this awful time and to be present. There were times I was angry, it's true, but all in all, when I look at all the blessings in my life, I realize that God doesn't make mistakes. He gives us challenges and he DOES give us more than we can handle sometimes. He gives us more so we lean on him to handle what we can't. My faith is stronger than ever and on those days I am reduced to tears and want to throw in the towel, I feel him lift me up and say, "You can't quit on him ... we got this."
And lastly, I feel that because of T1, we have met some people we never would've otherwise. I've been over this in my blogs many times, but it's true. Every time I hear of someone I know diagnosed or some young child diagnosed my eyes swell with tears and I want to reach out and say, "You're not alone, momma. I'm here for you. I know what you're going through, I know it well. Lean on me." I hope I've helped these people some. While I can't take it away from them either, I can listen and listening is something I've always done well. Sometimes all we need to hear is that we are doing all we can and that T1 isn't fair. Sometimes we just need a hug. Sometimes we just need to yell and scream and then cry about it to someone that truly understands and doesn't judge or roll their eyes with annoyance. Sometimes we need a break ... a real fucking break from it all. Trying to find someone to take care of your T1 so you can go to a movie with your husband or take a quick mini-vacation some weekend is almost impossible. Sometimes we need that!!
Diabetes is 24/7/365 and we mommas need a break ... all momma's need a break ... a momma of a T1 needs it so badly because I guarantee she's exhausted. She's not sleeping 8 hours, she's not eating right. She's constantly figuring out what to feed her T1. She's on hold with the insurance company to order supplies because the 60 day supply lasted just 50. She's waiting for a call back from the Endocrinologist regarding some insulin changes because no matter what happens, he stays higher than 250 most of the day. She's grumpy but she's worried sick and she isn't just thinking about what could happen at the football game tonight, she's thinking about his first day away at college and if he will remember to dose himself after a night of partying even though he's not 21. So. Many. Worries.
Tough questions. Questions I ask sometimes and questions I wonder about, but I don't think anyone really knows the answer to those. We all have a theory or our own beliefs, but no one can say with 100% certainty that God did or did not create this bad stuff.
What I do know is that I am Trey's mom and Trey does have Type 1 Diabetes and we do fight it every single day. I know that I give 100% to that child and his illness and I know that it leaves me crabby, tired, defeated and boring. I know that the disease is in control. I know that no matter what I do, I won't ever be able to take it away from him. I know that I worry myself sick because of T1. I sometimes think about him going out on his first date, his first vacation away without me, his first week of college and his children some day.
Before Trey was diagnosed, I had made the comment to my best friend that I sometimes wonder if Trey would have a short life ... I wondered if he would die at a young age. Trey is a kid who has so much life in him. People are drawn to him like a bee to a flower. We have taken him to hockey games and races in different states and he's always either on the JumboTron's, in photographs or making new important friends. It sometimes blows my mind. What scared me is that when you would read of younger children who die ... Their obits were never about how the kid didn't do anything, no one liked him, he kept to himself. It was always about how full of life the kid was, always smiling and the star player for the team. Always! I see that in my Trey.
His diagnoses scared me for so many reasons and I'm not kidding when I say one of the first things that popped into my mind after hearing 'Type 1 Diabetes' was this is it ... He's doing to die young. There is still that fear, I won't lie. But I think after having a better understanding of T1 I don't think of it as often as I used to.
We were given this for a reason. I firmly believe one of those reasons was to educate other people. While I'm very much an introverted person, I am not afraid to speak up and be very articulate when it comes to something I know well and something I am passionate about. (People were surprised I sold Norwex because I had to get up in front of people and talk) I don't have this blog or Trey's T1D Facebook page for sympathy. I have those so I can educate people. I need people who read that page, to inform others. Stop the stigma that T1 = obesity and sugar.
I also am a self proclaimed control freak (sometimes! Over certain things anyway). I can't control diabetes. I've been shown who really is in control of things. As much as I try to do the right things and carefully count carbs and administer the perfect amount of insulin ... diabetes is going to do what diabetes wants.
I was going through some personal struggles when Trey was diagnosed. Without getting into details, I will say that his diagnoses came at the perfect time. I had just lost my job at Wyndham due to the relocation; I was going to be opening my own daycare; and I could be home to take care of him those first months. Without taking anything away from his daycare provider at the time, there is no way she could've handled what T1 demanded.
I've always been a faithful person, understanding that everything happens for a reason. I trusted God to help guide us through this awful time and to be present. There were times I was angry, it's true, but all in all, when I look at all the blessings in my life, I realize that God doesn't make mistakes. He gives us challenges and he DOES give us more than we can handle sometimes. He gives us more so we lean on him to handle what we can't. My faith is stronger than ever and on those days I am reduced to tears and want to throw in the towel, I feel him lift me up and say, "You can't quit on him ... we got this."
And lastly, I feel that because of T1, we have met some people we never would've otherwise. I've been over this in my blogs many times, but it's true. Every time I hear of someone I know diagnosed or some young child diagnosed my eyes swell with tears and I want to reach out and say, "You're not alone, momma. I'm here for you. I know what you're going through, I know it well. Lean on me." I hope I've helped these people some. While I can't take it away from them either, I can listen and listening is something I've always done well. Sometimes all we need to hear is that we are doing all we can and that T1 isn't fair. Sometimes we just need a hug. Sometimes we just need to yell and scream and then cry about it to someone that truly understands and doesn't judge or roll their eyes with annoyance. Sometimes we need a break ... a real fucking break from it all. Trying to find someone to take care of your T1 so you can go to a movie with your husband or take a quick mini-vacation some weekend is almost impossible. Sometimes we need that!!
Diabetes is 24/7/365 and we mommas need a break ... all momma's need a break ... a momma of a T1 needs it so badly because I guarantee she's exhausted. She's not sleeping 8 hours, she's not eating right. She's constantly figuring out what to feed her T1. She's on hold with the insurance company to order supplies because the 60 day supply lasted just 50. She's waiting for a call back from the Endocrinologist regarding some insulin changes because no matter what happens, he stays higher than 250 most of the day. She's grumpy but she's worried sick and she isn't just thinking about what could happen at the football game tonight, she's thinking about his first day away at college and if he will remember to dose himself after a night of partying even though he's not 21. So. Many. Worries.
Monday, August 21, 2017
Concrete?? No way.
First of all ... Trey Bagwell is on his way to Aberdeen this week to begin the hockey season. Let's all get excited for Wings hockey real quick!!
My Trey will start 4-on-4 hockey the middle of September ... another round of applause please!!!
School starts tomorrow .... big high-fives for everyone reading!!
Now that I got that all outta the way ... let's get to the reason for my blogpost.
I'm frustrated as HELL right now with the school nurse supervisor. Like ... I wanna hip-check this lady straight into the boards. UGH. I made up the 504 - everyone signed it just fine. Jordan met with the nurse, Heather as well as Trey's new teacher, Mrs Salfrank and all went well. I've had several discussions with Heather over the past couple weeks and we're on the same page as far as Trey's care goes.
Today I got a phone call from Heather that her supervisor needed more information regarding Trey's healthcare plan. She's not ok with us just going day-by-day like we currently are. Heather and I are in contact every day - several times a day sometimes - about Trey. As the supervisor put it to Heather, not everyone may be comfortable in calling the mom for some help. Did you have any sort of expression when you read that? I sure as hell did.
She needs more of a concrete plan. Say for example, something like this:
---> Trey can have a snack if his sugar is under 140. He cannot consume more than 12 carbs for his snack. He should get insulin for the carbs only. If Trey's sugar is over 140, he should not have a snack. We will not need to give a correction dose of insulin for his blood sugar before he consumes a snack.
Ok ... so I just whipped that up real quick but what she's looking for are concrete numbers. Blood sugar, carb counts, insulin dosages. I told her "I cannot do that. Nothing about T1 is concrete." I was told that if some nurse comes in to substitute, she may not feel comfortable calling me for help. My response???? "Well then I guess that substitute shouldn't be there trying to take care of someone she isn't comfortable with. Ever think I'm not comfortable in this sub nurse NOT contacting me to verify things with me??? Think maybe if there is a sub nurse, I'll just keep Trey home. Win win for everyone then!" My response wasn't thought-out well and it didn't go over the best either.
The nurse supervisor is someone I've known personally for a long time. She was a nurse for the school district for years before being moved up and over-seeing all school nurses. Again, just because someone has a degree in the medical field, they don't always understand how Type 1 Diabetes works! Hell, I live the life of a pancreas 24 hours a day and I don't understand it either sometimes.
We got into a discussion about when a correction dose of insulin should be given .. and again I said, "It just depends. What did he have for lunch/snack? Where are the arrows on his CGM? Has he been to PE or Recess yet? Is there another snack coming up later today? What time is it? What time was his last dose of insulin? Does he still have any insulin on board?" I mean ... there are just soooooo many factors that play a part. I could come up with 300 scenarios and every one would have a potential different response! I cannot put it to you in black and white.
"Should we say that over 250 he needs a correction and then he can't have snack?" she asks. I was getting so damn frustrated on the phone. I said, "I cannot answer that. Maybe on Tuesday we would do that but on Friday we would let it go. Or maybe Monday he would not get the snack and maybe Thursday he could have half of it with insulin. I cannot give you concrete numbers. I can't!" She says she wishes it was easier and I said NO SHIT! ME TOO!
So here we are - the day before school. All was smooth-sailing and now I'm so damn frustrated. Nothing about any of this was said last year. I didn't have to give concrete numbers at all. We played it by ear - every day - and it worked out perfectly. This year we will play it by ear - every day - and things will be fine. As for concrete numbers ... it isn't going to happen and I'm not going to give you any type of concrete numbers or scenarios just so you can give them to a sub-nurse that doesn't know anything about T1D. Perhaps you should educate yourself and your staff on how DIFFERENT and DIFFICULT managing T1D really is and that there is nothing .... nothing concrete about it. Heather and I got this ... the supervisor can go fly a kite.
Rant Over.
My Trey will start 4-on-4 hockey the middle of September ... another round of applause please!!!
School starts tomorrow .... big high-fives for everyone reading!!
Now that I got that all outta the way ... let's get to the reason for my blogpost.
I'm frustrated as HELL right now with the school nurse supervisor. Like ... I wanna hip-check this lady straight into the boards. UGH. I made up the 504 - everyone signed it just fine. Jordan met with the nurse, Heather as well as Trey's new teacher, Mrs Salfrank and all went well. I've had several discussions with Heather over the past couple weeks and we're on the same page as far as Trey's care goes.
Today I got a phone call from Heather that her supervisor needed more information regarding Trey's healthcare plan. She's not ok with us just going day-by-day like we currently are. Heather and I are in contact every day - several times a day sometimes - about Trey. As the supervisor put it to Heather, not everyone may be comfortable in calling the mom for some help. Did you have any sort of expression when you read that? I sure as hell did.
She needs more of a concrete plan. Say for example, something like this:
---> Trey can have a snack if his sugar is under 140. He cannot consume more than 12 carbs for his snack. He should get insulin for the carbs only. If Trey's sugar is over 140, he should not have a snack. We will not need to give a correction dose of insulin for his blood sugar before he consumes a snack.
Ok ... so I just whipped that up real quick but what she's looking for are concrete numbers. Blood sugar, carb counts, insulin dosages. I told her "I cannot do that. Nothing about T1 is concrete." I was told that if some nurse comes in to substitute, she may not feel comfortable calling me for help. My response???? "Well then I guess that substitute shouldn't be there trying to take care of someone she isn't comfortable with. Ever think I'm not comfortable in this sub nurse NOT contacting me to verify things with me??? Think maybe if there is a sub nurse, I'll just keep Trey home. Win win for everyone then!" My response wasn't thought-out well and it didn't go over the best either.
The nurse supervisor is someone I've known personally for a long time. She was a nurse for the school district for years before being moved up and over-seeing all school nurses. Again, just because someone has a degree in the medical field, they don't always understand how Type 1 Diabetes works! Hell, I live the life of a pancreas 24 hours a day and I don't understand it either sometimes.
We got into a discussion about when a correction dose of insulin should be given .. and again I said, "It just depends. What did he have for lunch/snack? Where are the arrows on his CGM? Has he been to PE or Recess yet? Is there another snack coming up later today? What time is it? What time was his last dose of insulin? Does he still have any insulin on board?" I mean ... there are just soooooo many factors that play a part. I could come up with 300 scenarios and every one would have a potential different response! I cannot put it to you in black and white.
"Should we say that over 250 he needs a correction and then he can't have snack?" she asks. I was getting so damn frustrated on the phone. I said, "I cannot answer that. Maybe on Tuesday we would do that but on Friday we would let it go. Or maybe Monday he would not get the snack and maybe Thursday he could have half of it with insulin. I cannot give you concrete numbers. I can't!" She says she wishes it was easier and I said NO SHIT! ME TOO!
So here we are - the day before school. All was smooth-sailing and now I'm so damn frustrated. Nothing about any of this was said last year. I didn't have to give concrete numbers at all. We played it by ear - every day - and it worked out perfectly. This year we will play it by ear - every day - and things will be fine. As for concrete numbers ... it isn't going to happen and I'm not going to give you any type of concrete numbers or scenarios just so you can give them to a sub-nurse that doesn't know anything about T1D. Perhaps you should educate yourself and your staff on how DIFFERENT and DIFFICULT managing T1D really is and that there is nothing .... nothing concrete about it. Heather and I got this ... the supervisor can go fly a kite.
Rant Over.
Friday, August 11, 2017
School can start now
This summer has flown by. Last entry was June 7th!?
This time lat year, I was a friggin mess. I was preparing to send my baby off to Kindergarten to a school who had no other T1 child in it. I was printing off page after page to make up a dozen folders full of Diabetes information for his teachers. I was angry with the principal for giving me the run around over the 504 meeting I had requested.
This year??? I can't wait for Trey to go back to school. It's been a short - but yet long summer with both kids home with me. I forgot how much work it was dealing with his diabetes care 24 hours a day and not getting that little 8 hour break during the day when he's in someone else's care. While I still read his CGM readings and text back and forth with his nurse multiple times a day -- she is the one who had to handle it all. I also cannot wait for him to get back into a routine. Getting up at the same time, eating lunch at the same time, having recess at the same time. All that routine honestly helps a T1 out. He needs it.
We had a Endo appt in July and I was certain his A1C level would be fairly good because even though we had that month of sneaking food, he seemed to be doing better in July. Based on the Dexcom graph, things looked to be under 7.5. Bloodwork said otherwise. Defeated. It's like I was flying in a hot air balloon with 7.5 and the day the phone call came, someone popped that damn thing while I was 3000 feet in the air and I came crashing down.
I added basal rates, I adjusted his lunch ratio and I decided instead of being OK with 200 blood sugars ... 200 was our new 300 and it just couldn't happen anymore. In fact, when I see 180 on the CGM I start giving a mini-dose of insulin to help stop it from getting any higher. I reached out to my ModSquad group for help because I swear .... this group of 8,000 men and women know EXACTLY how to help me. They suggested I begin pre-bolusing Trey at meals. We've done this some in the past and it always back-fires on us, but I was ready to deal with it and make it part of our new routine to see if it helped. Can I tell you .... it DID help!!!! While it's hard for Trey to sometimes to full-fill his carbs he needs to eat, there is always a few skittles or a 1/4c chocolate milk he's willing to have to be sure he's got the carb counts right.
We're far from perfect ... we're sitting at 164 average the last 7 days (we also had a 4 day vacation to Cedar Lake Speedway right in the middle of this new pre-bolusing deal) which is pretty good, but I would LOOOOOVVVVVVEEEEEEE to see that at 150. We don't go back to the endo until November, but 8.9 A1C just cannot happen again. When doc says, "He's still under 10." that's not good enough for mom. Under 8 is where I insist we be ... and therefore I'll keep plugging away at trying my damnest to make that happen.
School ... less than two weeks ... cannot wait. Such a different story this year. I'm confident in his teachers, the school staff and have the utmost belief in Mrs Osborn, the nurse, to keep my guy healthy under her watch. Such a relief for me this year.
This time lat year, I was a friggin mess. I was preparing to send my baby off to Kindergarten to a school who had no other T1 child in it. I was printing off page after page to make up a dozen folders full of Diabetes information for his teachers. I was angry with the principal for giving me the run around over the 504 meeting I had requested.
This year??? I can't wait for Trey to go back to school. It's been a short - but yet long summer with both kids home with me. I forgot how much work it was dealing with his diabetes care 24 hours a day and not getting that little 8 hour break during the day when he's in someone else's care. While I still read his CGM readings and text back and forth with his nurse multiple times a day -- she is the one who had to handle it all. I also cannot wait for him to get back into a routine. Getting up at the same time, eating lunch at the same time, having recess at the same time. All that routine honestly helps a T1 out. He needs it.
We had a Endo appt in July and I was certain his A1C level would be fairly good because even though we had that month of sneaking food, he seemed to be doing better in July. Based on the Dexcom graph, things looked to be under 7.5. Bloodwork said otherwise. Defeated. It's like I was flying in a hot air balloon with 7.5 and the day the phone call came, someone popped that damn thing while I was 3000 feet in the air and I came crashing down.
I added basal rates, I adjusted his lunch ratio and I decided instead of being OK with 200 blood sugars ... 200 was our new 300 and it just couldn't happen anymore. In fact, when I see 180 on the CGM I start giving a mini-dose of insulin to help stop it from getting any higher. I reached out to my ModSquad group for help because I swear .... this group of 8,000 men and women know EXACTLY how to help me. They suggested I begin pre-bolusing Trey at meals. We've done this some in the past and it always back-fires on us, but I was ready to deal with it and make it part of our new routine to see if it helped. Can I tell you .... it DID help!!!! While it's hard for Trey to sometimes to full-fill his carbs he needs to eat, there is always a few skittles or a 1/4c chocolate milk he's willing to have to be sure he's got the carb counts right.
We're far from perfect ... we're sitting at 164 average the last 7 days (we also had a 4 day vacation to Cedar Lake Speedway right in the middle of this new pre-bolusing deal) which is pretty good, but I would LOOOOOVVVVVVEEEEEEE to see that at 150. We don't go back to the endo until November, but 8.9 A1C just cannot happen again. When doc says, "He's still under 10." that's not good enough for mom. Under 8 is where I insist we be ... and therefore I'll keep plugging away at trying my damnest to make that happen.
School ... less than two weeks ... cannot wait. Such a different story this year. I'm confident in his teachers, the school staff and have the utmost belief in Mrs Osborn, the nurse, to keep my guy healthy under her watch. Such a relief for me this year.
Wednesday, June 7, 2017
I'm so angry
I like to think that I am fairly strong when it comes to being a mother of a T1 child. I like to think that for the most part, I have my shit together and I'm able to keep a fairly level head over the whole thing.
But I'm only human, and sometimes I am NOT strong and I am NOT level headed. There are days when highs and lows happen and I don't get too emotional and then there are days where I just can't keep my emotions in check. Granted ... That's human nature for anyone - a T1 mom or not.
I had a moment last night that I feel like I need to share ... For my own benefit of getting it out there instead of keeping it bottled up inside. After all, this blog is my therapy.
Trey had a good supper, good sugars afterwards and so we had Twist Cone. Trey gets the baby size Lemon Italian Ice in a dish and I administer insulin to cover it. It's tricky - sometimes Italian ice spikes him something terrible and other times it doesn't phase him at all. Last night it didn't phase him so naturally his sugars dropped.
As I lay in bed watching his CGM on my phone drop lower and lower, I get up and get a couple of cheese crackers. I sit at the foot of his bed, watching him sleep soundly, and all of a sudden I'm hunched over into his comforter, sobbing. I was angry and I said, "Why my Trey? Why can't he be a healthy kid who doesn't have to go through any of this shit? What did we do to deserve to have this disease try to ruin our lives and take so much away from my Trey?? He's always been such a good kid .... Why can't it be some little shithead? WHY???????"
I sat up, gathered myself and woke up my sleeping boy by telling him "Buddy, your sugar is low and I need you to sit up and eat a couple crackers." I continued to sit at the end of the bed, watching him chomp on crackers at 11:15pm with his eyes still closed as tears ran down my face.
It was just a moment. A weak moment. A moment of truth ... My son isn't healthy. I am tired of the highs and lows. I am tired of waking him to make him eat. I am tired of the constant 24 hour care he needs. I'm tired of the simplest things - golf lessons - being something bigger and more of a big deal that it really should be. I'm tired of lugging around his diabetic kit in my purse everywhere we go. I'm tired of asking him what his number is or asking him to poke his finger. I'm tired of counting carbs. I'm tired ... Oh GOD am I tired of telling him "No, you can't have that right now." When he wants a snack/piece of candy/etc. I'm tired of people thinking his CGM is a phone and tired of the judgement that comes along with that statement. (Truthfully ... If I choose to give my 6 year old a damn cell phone it's really no business of anyone else's ... Correct?? Judge away!) I'm tired of looking for new foods for him to try but yet I'm tired of making the same meals just so he can have somewhat stable sugars. Right now, I'm tired of educating people. I'm tired of no one understanding what life as a T1 mom is all about. I'm tired of people asking "How are Trey's sugars?" But yet I am tired of people that SHOULD be asking ... Not asking.
So, I guess it's safe to say I'm pretty angry right now. I've been angry at T1 before. Then I accepted it for what it was and then I fought with everything I had to get our story out there and vowed to help other's who may be going through the same bullshit we are. I've been sad ... So sad ... More than I can even try to explain. I've been desperate for a break, for a glimmer of hope, for a good day, for a 24 hour period with amazing sugars. I've been inspired by so many people who are living their dream and showing me that Trey CAN lead a normal life someday. I've been touched by the friends and family who try to understand, offer any help and for the fellow T1 families we have met over the year.
This journey ins't easy, friends. It's changed my life. I've lost people but I've gained even better people. Being a parent is hard ... Being a parent changes you. It truly does. Being a parent of a T1 child is something I just can't even explain as I feel it's something you have to go through yourself to fully grasp just how hard it is. I've always prided myself on being a strong, independent woman ... Well, I am not so sure I really am her anymore. I'm different because I have to be.
But I'm only human, and sometimes I am NOT strong and I am NOT level headed. There are days when highs and lows happen and I don't get too emotional and then there are days where I just can't keep my emotions in check. Granted ... That's human nature for anyone - a T1 mom or not.
I had a moment last night that I feel like I need to share ... For my own benefit of getting it out there instead of keeping it bottled up inside. After all, this blog is my therapy.
Trey had a good supper, good sugars afterwards and so we had Twist Cone. Trey gets the baby size Lemon Italian Ice in a dish and I administer insulin to cover it. It's tricky - sometimes Italian ice spikes him something terrible and other times it doesn't phase him at all. Last night it didn't phase him so naturally his sugars dropped.
As I lay in bed watching his CGM on my phone drop lower and lower, I get up and get a couple of cheese crackers. I sit at the foot of his bed, watching him sleep soundly, and all of a sudden I'm hunched over into his comforter, sobbing. I was angry and I said, "Why my Trey? Why can't he be a healthy kid who doesn't have to go through any of this shit? What did we do to deserve to have this disease try to ruin our lives and take so much away from my Trey?? He's always been such a good kid .... Why can't it be some little shithead? WHY???????"
I sat up, gathered myself and woke up my sleeping boy by telling him "Buddy, your sugar is low and I need you to sit up and eat a couple crackers." I continued to sit at the end of the bed, watching him chomp on crackers at 11:15pm with his eyes still closed as tears ran down my face.
It was just a moment. A weak moment. A moment of truth ... My son isn't healthy. I am tired of the highs and lows. I am tired of waking him to make him eat. I am tired of the constant 24 hour care he needs. I'm tired of the simplest things - golf lessons - being something bigger and more of a big deal that it really should be. I'm tired of lugging around his diabetic kit in my purse everywhere we go. I'm tired of asking him what his number is or asking him to poke his finger. I'm tired of counting carbs. I'm tired ... Oh GOD am I tired of telling him "No, you can't have that right now." When he wants a snack/piece of candy/etc. I'm tired of people thinking his CGM is a phone and tired of the judgement that comes along with that statement. (Truthfully ... If I choose to give my 6 year old a damn cell phone it's really no business of anyone else's ... Correct?? Judge away!) I'm tired of looking for new foods for him to try but yet I'm tired of making the same meals just so he can have somewhat stable sugars. Right now, I'm tired of educating people. I'm tired of no one understanding what life as a T1 mom is all about. I'm tired of people asking "How are Trey's sugars?" But yet I am tired of people that SHOULD be asking ... Not asking.
So, I guess it's safe to say I'm pretty angry right now. I've been angry at T1 before. Then I accepted it for what it was and then I fought with everything I had to get our story out there and vowed to help other's who may be going through the same bullshit we are. I've been sad ... So sad ... More than I can even try to explain. I've been desperate for a break, for a glimmer of hope, for a good day, for a 24 hour period with amazing sugars. I've been inspired by so many people who are living their dream and showing me that Trey CAN lead a normal life someday. I've been touched by the friends and family who try to understand, offer any help and for the fellow T1 families we have met over the year.
This journey ins't easy, friends. It's changed my life. I've lost people but I've gained even better people. Being a parent is hard ... Being a parent changes you. It truly does. Being a parent of a T1 child is something I just can't even explain as I feel it's something you have to go through yourself to fully grasp just how hard it is. I've always prided myself on being a strong, independent woman ... Well, I am not so sure I really am her anymore. I'm different because I have to be.
Tuesday, June 6, 2017
Yet another 1st
We are on week three of Summer Vacation and I wish tomorrow was August 22nd so the kids can go back to school! There's something to be said of staying home with your kids all day long. On top of me working, I'm also mom and sometimes the combo of them sucks! I have a list of chores for each child to do along with a daily chart that says what they should be doing at different times of the day so they aren't watching 10 hours of TV or spending 5 hours on the iPad/kindle. That chart works about 70% of the time and the other 30% I'm either a bitch or I just flat out don't care by that time. Depends.
Summer also means weather change. As you know, South Dakota is already looking at temps in the 90's and we even hit 100 last week. YUCK!! That's just too damn hot already! While most people send their kid to the local swimming pool or have them run through sprinklers in the yard to cool down - it's not that easy with T1.
T1 complicates everything. EVERYTHING.
Last week Trey had numbers around 150. He went outside for 45 minutes and ran through the sprinkler and when he came in he was over 300. So you give a correction dose of insulin to get him down and then wait to see what happens. You guessed it ... He dropped and he dropped fast. Thankfully he was home so I could keep an eye on it and do what needed to be done before we were looking for Glucagon.
Don't get me wrong - any time of the year can be hard for whatever reason. But the summertime really sucks. You want them to be able to be outside and be active. You want them to be able to go hang with a buddy for the afternoon to get them out of your hair. You want to be able to drop them off at the pool and say "See ya in an hour!" T1 .... That damn thing called T1.
Trey started golf lessons a couple weeks ago. It's for an hour every Satruday until the end of June. He really enjoys it, but this last week he asked his dad to not follow him around the course - to just stay over with the other parents and watch from afar. I don't know what Jordan's reaction or thoughts were on this, but it really made me sad. The reason Jordan follows him from station to station is to keep an eye on Trey's sugar. The first week the CGM popped out and fell on the ground so we didn't know what sugars were, but this last week he was running on the lower end, was dressed too warm and it was 90* outside already so we had to keep a close eye on him. I don't know if a kid asked Trey why his dad was there or if it was just Trey on his own - but obviously he wanted to be a 'normal' kid and not have mom/dad watch every move. I sense this is going to happen more and more and while I respect him ... It's going to be hard to let go.
We had another first. Something I have said forever that I knew would happen - I was just hoping it woudln't be this soon. But then I stop and think that we have been at this for a year, he is growing, he is 6 and he is smart. He snuck food. Candy, none-the-less. UGH. We don't really have candy in the house anymore but Jordan picked up a bag of licorice at the store and had been munching on it. I'm doing that thing called working and Trey buzzes. He comes down and I smell his breath as he talks to me and I ask, "Were you eating something?" He swears he wasn't. I kept asking questions and it didn't take me long to know that in fact, he DID eat licorice and he WAS lying to me so I played along a bit. I hope he is always a bad liar because I could tell immediately he was not being honest. Delanie ... She's pretty good at hiding it. Trey isn't. So we had the discussion that if you want licorice, you have to ask and if you you don't ask, but eat it anyway ('I didn't ask because you would say no!") you have to be honest and tell me before you're over 300 so I can give you insulin for it. He ate just half a piece of licorice and he shot up quick. Hopefully a lesson learned for all of us and that sneaking stuff is few and far between.
Summer also means weather change. As you know, South Dakota is already looking at temps in the 90's and we even hit 100 last week. YUCK!! That's just too damn hot already! While most people send their kid to the local swimming pool or have them run through sprinklers in the yard to cool down - it's not that easy with T1.
T1 complicates everything. EVERYTHING.
Last week Trey had numbers around 150. He went outside for 45 minutes and ran through the sprinkler and when he came in he was over 300. So you give a correction dose of insulin to get him down and then wait to see what happens. You guessed it ... He dropped and he dropped fast. Thankfully he was home so I could keep an eye on it and do what needed to be done before we were looking for Glucagon.
Don't get me wrong - any time of the year can be hard for whatever reason. But the summertime really sucks. You want them to be able to be outside and be active. You want them to be able to go hang with a buddy for the afternoon to get them out of your hair. You want to be able to drop them off at the pool and say "See ya in an hour!" T1 .... That damn thing called T1.
Trey started golf lessons a couple weeks ago. It's for an hour every Satruday until the end of June. He really enjoys it, but this last week he asked his dad to not follow him around the course - to just stay over with the other parents and watch from afar. I don't know what Jordan's reaction or thoughts were on this, but it really made me sad. The reason Jordan follows him from station to station is to keep an eye on Trey's sugar. The first week the CGM popped out and fell on the ground so we didn't know what sugars were, but this last week he was running on the lower end, was dressed too warm and it was 90* outside already so we had to keep a close eye on him. I don't know if a kid asked Trey why his dad was there or if it was just Trey on his own - but obviously he wanted to be a 'normal' kid and not have mom/dad watch every move. I sense this is going to happen more and more and while I respect him ... It's going to be hard to let go.
We had another first. Something I have said forever that I knew would happen - I was just hoping it woudln't be this soon. But then I stop and think that we have been at this for a year, he is growing, he is 6 and he is smart. He snuck food. Candy, none-the-less. UGH. We don't really have candy in the house anymore but Jordan picked up a bag of licorice at the store and had been munching on it. I'm doing that thing called working and Trey buzzes. He comes down and I smell his breath as he talks to me and I ask, "Were you eating something?" He swears he wasn't. I kept asking questions and it didn't take me long to know that in fact, he DID eat licorice and he WAS lying to me so I played along a bit. I hope he is always a bad liar because I could tell immediately he was not being honest. Delanie ... She's pretty good at hiding it. Trey isn't. So we had the discussion that if you want licorice, you have to ask and if you you don't ask, but eat it anyway ('I didn't ask because you would say no!") you have to be honest and tell me before you're over 300 so I can give you insulin for it. He ate just half a piece of licorice and he shot up quick. Hopefully a lesson learned for all of us and that sneaking stuff is few and far between.
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