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.
Wednesday, October 18, 2017
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.
Tuesday, May 23, 2017
School is over!
We did it!!! We survived the first year of school with T1D! YAY!!!!!!!!!!!!
As you loyal readers know, I was a mess last summer as I tried to get everything (including myself!) prepared as Trey entered Kindergarten. I can safely say - the year went flawless thanks to Mrs. Heather Osborn! What an angel.
I guess it's sort of like sending your newborn to daycare. It's not something you're ready for, but you suck it up, hold back the tears and drop that kid off as you walk out the door and pray that everything goes well. You can't wait to get off work so you can pick him up. As the weeks pass, this task gets easier and easier and you (hopefully) develop a bond with the daycare provider. Truly, the provider knows your child just as well as you do because she spends more time with him than you!
This is basically the same as Trey and Heather. They developed a close bond, a trust, and I knew after just a few weeks that she truly loved my Treyster like her own child and she wouldn't let anything happen to him. From his classroom teacher, Mrs Smallman (whom we love) to the principal, Mr Alhberg ... Everyone stepped up and did exactly what they were supposed to do for my kid and for that -- I am forever grateful.
It's only day 2 of Summer Vacation, but August will be here soon and I have no reservations (yet!) about sending Trey back to school. I just hope and pray Mrs Osborn returns as the nurse!!
Year ... Over. Two Thumbs Up
As you loyal readers know, I was a mess last summer as I tried to get everything (including myself!) prepared as Trey entered Kindergarten. I can safely say - the year went flawless thanks to Mrs. Heather Osborn! What an angel.
I guess it's sort of like sending your newborn to daycare. It's not something you're ready for, but you suck it up, hold back the tears and drop that kid off as you walk out the door and pray that everything goes well. You can't wait to get off work so you can pick him up. As the weeks pass, this task gets easier and easier and you (hopefully) develop a bond with the daycare provider. Truly, the provider knows your child just as well as you do because she spends more time with him than you!
This is basically the same as Trey and Heather. They developed a close bond, a trust, and I knew after just a few weeks that she truly loved my Treyster like her own child and she wouldn't let anything happen to him. From his classroom teacher, Mrs Smallman (whom we love) to the principal, Mr Alhberg ... Everyone stepped up and did exactly what they were supposed to do for my kid and for that -- I am forever grateful.
It's only day 2 of Summer Vacation, but August will be here soon and I have no reservations (yet!) about sending Trey back to school. I just hope and pray Mrs Osborn returns as the nurse!!
Year ... Over. Two Thumbs Up
Sunday, May 7, 2017
Make a Difference
It's hard to believe we are still playing hockey in May, but we are! The Wings have made it to the 2nd round of playoffs with the tie-breaking game 5 on the line tomorrow night in Cloquet, MN. If they win tomorrow, they advance to the Robertson Cup Championships which will be played in Duluth, MN on May 11-14. This mom made the decision that if that happens -- we ARE going to watch!
After the last time the Wings traveled to Cloquet to play and I saw Snapchats of carts full of Gatorade, I decided that if the Wings had to travel again, I would be sure that I sent the proper foods/drinks along for Bagwell. Last nigh after the game I stopped Bagwell as he walked by and said, "What kind of snacks can I get for you to take?" At 11:15pm last night, Treyster and I buzzed to Kesslers and Wal-Mart for snacks and PowerAde Zero. $80.00 later, we came home with more than enough protein bars, trail-mix type packs, almonds, pretzel sticks with cheese, goldfish and jerkey to keep him full all week long. (We planned on them staying a week!!)
I texted him a photo of the cart and asked him to stop by in the morning to grab it and he did just that. He was very thankful and I told him there are no excuses to not have decent sugars! He told me he would text me his sugars throughout the week to prove he was eating the right things. And as I type this blog, I did get a text from him with a screenshot of his sugar 180 and message of "protein packs are amazing!" Stick with me boy, you'll go far! :) hahaha
So whether or not Trey Bagwell is in an Aberdeen Wings uniform or not next year, I am a peace knowing that I had him in my life for awhile, I was able to learn from him and hopefully I was able to teach him a little something as well. T1's have to stick together. It's a complicated life that so many others don't understand and I will always, ALWAYS, be there for Bags no matter where he is or what he needs. I got his back.
Love him like my own ... I mean that 100%.
After the last time the Wings traveled to Cloquet to play and I saw Snapchats of carts full of Gatorade, I decided that if the Wings had to travel again, I would be sure that I sent the proper foods/drinks along for Bagwell. Last nigh after the game I stopped Bagwell as he walked by and said, "What kind of snacks can I get for you to take?" At 11:15pm last night, Treyster and I buzzed to Kesslers and Wal-Mart for snacks and PowerAde Zero. $80.00 later, we came home with more than enough protein bars, trail-mix type packs, almonds, pretzel sticks with cheese, goldfish and jerkey to keep him full all week long. (We planned on them staying a week!!)
I texted him a photo of the cart and asked him to stop by in the morning to grab it and he did just that. He was very thankful and I told him there are no excuses to not have decent sugars! He told me he would text me his sugars throughout the week to prove he was eating the right things. And as I type this blog, I did get a text from him with a screenshot of his sugar 180 and message of "protein packs are amazing!" Stick with me boy, you'll go far! :) hahaha
So whether or not Trey Bagwell is in an Aberdeen Wings uniform or not next year, I am a peace knowing that I had him in my life for awhile, I was able to learn from him and hopefully I was able to teach him a little something as well. T1's have to stick together. It's a complicated life that so many others don't understand and I will always, ALWAYS, be there for Bags no matter where he is or what he needs. I got his back.
Love him like my own ... I mean that 100%.
Thursday, April 13, 2017
Trey Bagwell
When we started this T1D journey over a year ago, I knew we would meet people who were on the same ride as we were. I befriended people on Facebook that people had told me about and I knew that I wasn't alone - even though it felt like I was. I have asked these fellow mom's for some advice along the way and then I found that MOD's Facebook group of over 7,000 other mom's who go through the same struggles I do on a daily basis and they've brought me great comfort, advice and just a place I could go to and vent without being judged or questioned.
I had always hoped that some day I would be able to change someone's life and that someday I would be the one giving out advice. As I've preached - I want to educate others to help the world understand what Type 1 Diabetes really is and how it affects EVERYTHING in your life.
Then this 18 year old kid from Arizona joins our local hockey team and my life changed.
(I honestly don't even know how to put it into words. I'll try my best.)
Trey Bagwell. 18 year old hockey player. Born in Arizona to Robert and Betty Bagwell. Dad is a EMT and mom is a RN. Diagnosed with T1D at age 13. Continued to play hockey and was traded from the Wenatchee Wild to the Aberdeen Wings in October - just as my own Trey begins his first year as a Termite hockey player. Trey Bagwell shoots left, loves golf, is a little goofy, has a big soft heart, and undoubtedly, was brought into my life for a reason.
Since October, we have been in touch with one another about diabetes related things. He's been like a big brother to Treyster. As of late, he's been like a son to me.
You see, I thought Trey Bagwell coming to Aberdeen was for my Treyster. I thought the coincidences were just too much and that he was here to inspire my Trey and show him that even though you have T1D, you can fulfill your dreams. While I still believe this, I'm realizing that Trey Bagwell has changed ME.
I watch Trey on the ice, on the bench, and in the stands. I watch for T1 symptoms. When he leaves the bench during a game, I know he's checking sugar. When I see the trainer grab her phone and say something to him and he nods, I know she just told him what his CGM number is reading. When I see him eating something I cross my fingers that it's not Laffy Taffy but instead, almonds. When he walks by us at the Wings game with a plate of food, he smiles and says, "I'm going to dose now." As he knows what this T1 mom is thinking.
Trey Bagwell showed up at Treyster's 6th birthday party. Treyster invited him the Friday before the party and I told him, 'Don't be upset if he doesn't come buddy." Seeing my Treyster run up to Bagwell and give him a huge hug and say, "TREEEYYYY!" Melted my heart as Bags hugged him back and gave him a huge smile. They made up a handshake, Bags helped Trey bowl every single time up, they played a game of pool, Bag's took his photo with the rest of the 6 year old party goers. And let me tell you - it all felt so normal. For two hours, Bagwell hung out with all these kids and he fit right in.
You see, to me, Trey Bagwell isn't just a Wings hockey player, he is my son. I know, it sounds weird and maybe even a little creepy. Let me try to explain further.
Bagwell and I discuss T1 things in depth. We hash over carb counts, discuss insulin dosages, talk about highs/lows and what foods have been consumed. I've ordered different patches to help him with his CGM sticking on and he's asked my opinion about developing a diabetic 'box' to keep supplies in. He trusts me. He can relate to me. There isn't anyone else in Aberdeen that he can go to that understands what he goes through. Without a doubt, we have bonded. He knows I am looking out for him and he knows he can come to me when he needs T1D help.
I've discussed this before, but now I have spoken with both Bob and Betty as well as Trey and have expressed my openness for Trey to live with us next year if he returns to the Wings. I don't want Trey Bagwell to live with me so I can say "I have a Wings player" but rather so I can say, "I' have Trey Bagwell and I'm helping him get his nutrition on point to keep him as healthy as he can be." And if that makes him a better hockey player in the long run, that's fantastic.
When I hear of the things he is eating - I cringe. He is a 19 year old young man, but I need him to be an inspiration to my boy and eating Laffy Taffy, drinking Gatorade and telling me, "I'll dose" isn't the right way to go about it. I hope I get the chance to help him.
God sent Trey Bagwell. For me and for Trey. And maybe, just maybe, for Trey Bagwell too. Maybe he needed someone to understand and look out for him. Maybe he needed to have a little boy with T1D look up to him and make a video calling him out on his eating habits. Maybe Bagwell is supposed to help Trey with his hockey while Trey is supposed to help Bagwell with his nutrition. And I'm just the mom to two Trey's, who play hockey, shoot left, love golf, have huge hearts, dark brown eyes that melt girls hearts, are goofy and happen to fight a battle for their life every day.
NO matter what happens - I'll always have a special place in my heart for Trey Bagwell and I'll always have the memories of all he did for us during his stint in Aberdeen. I just pray that God keeps him in my life a little bit longer so I can help him even more.
NO matter what happens - I'll always have a special place in my heart for Trey Bagwell and I'll always have the memories of all he did for us during his stint in Aberdeen. I just pray that God keeps him in my life a little bit longer so I can help him even more.
Wednesday, March 29, 2017
Changes
So obviously I've changed up the page a little. Time to move onto the Summer sport ... racing!! No, no - Trey isn't hopping into any sort of car anytime soon (although he does want to drive a go-kart ... who wants to get that set up and be his crew chief?)
We had our 1 year visit with Dr Gupta on Monday. Trey hasn't gained any weight - in fact he keeps dropping a pound every appointment, but he is growing tall so that's good. Doc said his BMI is still where it should be so we won't worry about the weight at this time. They sent us to up the lab for a blood draw where the only highlight for Trey was being able to watch the helicopter take off. I'm certain he would've sat up there with Miss Alexis all day if she would've let him. That is, as long as she didn't keep trying to draw HIS blood. Wasn't a good deal. I got the results from the lab yesterday and I wasn't very happy. His A1C went from 8.4 to 8.8. Nurse Emily said they like the low 8's or even 7's but he is still down a lot from August when he was 10.3. I was sure we would be lower than 8.4 and I'm so upset we aren't. That means mom has work to do!
Doctor Gupta just made a couple minor changes to Trey's insulin dosages. Increased his basal slightly through the morning and then decreased his dinner food ratio by 5. I'm not convinced these changes will be enough to get us down in a1C so I'm going to keep close tabs on what happens for the next couple months and make changes I feel necessary.
I reached out to my MOD's group after getting the results. Many different opinions of course, but they each gave me what I needed -- confidence that I know what I'm doing and I know how to care for my son. I had one person tell me I'm not feeding him enough carbs but she quickly shut up when I told her 100 carbs a day was a substantial amount of carbs for a 6 year old boy. I had another one tell me to find a new Endo. Ummm .... our Endo is just fine!? But again, 99% of them told me to do what I need to do based on what's best for my son so I'll do just that! There will be more insulin changes coming!!
/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-
If you are a member of Trey's T1D Facebook page, you've been kept up to date better than the blog. I typically blog only when I have enough material to fill a page or when I have something really bothering me that I need to get off my chest. Also if you're following Trey's page, you've seen his videos he loves doing. So many career choices if his NHL plans don't work out. Haha! I just want to reiterate that I don't post our daily life and the struggles to gain any sympathy. If you want to empathize with us - great, but please don't pity us. While it is a struggle most days, there is so much to be grateful for and the reason I want to post the good/bad/ugly is to educate people. It's something I feel very passionate about. Other families like to keep quiet about their life with diabetes and I respect that - however, I choose to talk about it, openly, and give my honest feedback to anyone that asks. If you know me, you know honest is my thing as well as not sugarcoating anything. Not a fan of that. I'm happy to add members to that page - just send them the link to the page - share it or have them search for it and I'll get them added. There is probably some information on there that would help someone -- other than just pictures of Trey eating ice cream :)
Last, you can always plug in your email address at the top of this page and hit SUBMIT and any updates I post here will be emailed to you. Some posts get 15 pageviews and some get 2. Since I don't update it often - I suggest using that fun little feature :)
I'm out!
Natalie
We had our 1 year visit with Dr Gupta on Monday. Trey hasn't gained any weight - in fact he keeps dropping a pound every appointment, but he is growing tall so that's good. Doc said his BMI is still where it should be so we won't worry about the weight at this time. They sent us to up the lab for a blood draw where the only highlight for Trey was being able to watch the helicopter take off. I'm certain he would've sat up there with Miss Alexis all day if she would've let him. That is, as long as she didn't keep trying to draw HIS blood. Wasn't a good deal. I got the results from the lab yesterday and I wasn't very happy. His A1C went from 8.4 to 8.8. Nurse Emily said they like the low 8's or even 7's but he is still down a lot from August when he was 10.3. I was sure we would be lower than 8.4 and I'm so upset we aren't. That means mom has work to do!
Doctor Gupta just made a couple minor changes to Trey's insulin dosages. Increased his basal slightly through the morning and then decreased his dinner food ratio by 5. I'm not convinced these changes will be enough to get us down in a1C so I'm going to keep close tabs on what happens for the next couple months and make changes I feel necessary.
I reached out to my MOD's group after getting the results. Many different opinions of course, but they each gave me what I needed -- confidence that I know what I'm doing and I know how to care for my son. I had one person tell me I'm not feeding him enough carbs but she quickly shut up when I told her 100 carbs a day was a substantial amount of carbs for a 6 year old boy. I had another one tell me to find a new Endo. Ummm .... our Endo is just fine!? But again, 99% of them told me to do what I need to do based on what's best for my son so I'll do just that! There will be more insulin changes coming!!
/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-/-
If you are a member of Trey's T1D Facebook page, you've been kept up to date better than the blog. I typically blog only when I have enough material to fill a page or when I have something really bothering me that I need to get off my chest. Also if you're following Trey's page, you've seen his videos he loves doing. So many career choices if his NHL plans don't work out. Haha! I just want to reiterate that I don't post our daily life and the struggles to gain any sympathy. If you want to empathize with us - great, but please don't pity us. While it is a struggle most days, there is so much to be grateful for and the reason I want to post the good/bad/ugly is to educate people. It's something I feel very passionate about. Other families like to keep quiet about their life with diabetes and I respect that - however, I choose to talk about it, openly, and give my honest feedback to anyone that asks. If you know me, you know honest is my thing as well as not sugarcoating anything. Not a fan of that. I'm happy to add members to that page - just send them the link to the page - share it or have them search for it and I'll get them added. There is probably some information on there that would help someone -- other than just pictures of Trey eating ice cream :)
Last, you can always plug in your email address at the top of this page and hit SUBMIT and any updates I post here will be emailed to you. Some posts get 15 pageviews and some get 2. Since I don't update it often - I suggest using that fun little feature :)
I'm out!
Natalie
Wednesday, March 15, 2017
365 Days
We made it a whole year. 365 days down. While we had some ups and downs; some higher A1C levels than we prefer; we made it.
I tried to be really calm yesterday. I've had such anxiety over this date. I wonder if that feeling ever goes away? I realize it's a day you remember forever - like a birthday or a death. But I wonder if the anxiety over it goes away as the years pass.
We let Trey pick where he wanted to have supper last night. His first choice was McDonald's. I said since we were taking Trey Bagwell out with us, I was thinking of someplace a little nicer. He sighs and says, "Ok then Arby's." Jordan and I about split a gut. I said I was thinking of Wings and Rings or Mavericks.
Bagwell met us at Mavericks. We had good conversation and Trey had a line-up of questions he asked. Bagwell had never been to Mavericks, nor had heard of Mello Yello or chislic. We talked about State B's in town this weekend and how they were small towns. He asked how small and we said 300 people. His eyes got huge and said, "300????? The TOWN???" Haha Phoenix, AZ guy here ... Culture shock. We, naturally, talked some of diabetes as he whips out his kit and gives himself a shot in the arm right at the table. He said the teammates ask him questions every time about why he gives insulin or different things. He said it gets really old and annoying. Me, as the mom, I think it's good the team asks questions - it's how they learn. Andy Carroll is also a Wings player and Bagwell told us Andy's dad is T1 too so Andy sort of understands.
I can't say enough how appreciative I am of Trey Bagwell. He's been an open book about his life with T1, he's taken the time to ask questions about Trey's T1 and he could have easily blown us off for supper but he didn't. His parents have been so gracious and have communicated with us a lot as well. We will get to finally meet Betty Bagwell this weekend when she's in town to watch the Wings play for the first time this season.
"We don't meet people by accident. They are meant to cross our path for a reason." I'm so grateful.
I tried to be really calm yesterday. I've had such anxiety over this date. I wonder if that feeling ever goes away? I realize it's a day you remember forever - like a birthday or a death. But I wonder if the anxiety over it goes away as the years pass.
We let Trey pick where he wanted to have supper last night. His first choice was McDonald's. I said since we were taking Trey Bagwell out with us, I was thinking of someplace a little nicer. He sighs and says, "Ok then Arby's." Jordan and I about split a gut. I said I was thinking of Wings and Rings or Mavericks.
Bagwell met us at Mavericks. We had good conversation and Trey had a line-up of questions he asked. Bagwell had never been to Mavericks, nor had heard of Mello Yello or chislic. We talked about State B's in town this weekend and how they were small towns. He asked how small and we said 300 people. His eyes got huge and said, "300????? The TOWN???" Haha Phoenix, AZ guy here ... Culture shock. We, naturally, talked some of diabetes as he whips out his kit and gives himself a shot in the arm right at the table. He said the teammates ask him questions every time about why he gives insulin or different things. He said it gets really old and annoying. Me, as the mom, I think it's good the team asks questions - it's how they learn. Andy Carroll is also a Wings player and Bagwell told us Andy's dad is T1 too so Andy sort of understands.
I can't say enough how appreciative I am of Trey Bagwell. He's been an open book about his life with T1, he's taken the time to ask questions about Trey's T1 and he could have easily blown us off for supper but he didn't. His parents have been so gracious and have communicated with us a lot as well. We will get to finally meet Betty Bagwell this weekend when she's in town to watch the Wings play for the first time this season.
"We don't meet people by accident. They are meant to cross our path for a reason." I'm so grateful.
Saturday, March 11, 2017
The Whole Story
I've never told the whole story. I looked back at the first post I wrote and I see I wrote "I'll spare you the details at this time." I guess it's time to tell the story.
Sometime in January 2016, Trey began getting up to go potty in the night. He also had a couple times where he started to wet the bed, but woke himself up. Jordan and I chalked it up to him drinking too much before bed, so we told him no more drinks at bedtime. There was also a time in January that he came down with what we thought was the stomach flu. This mom doesn't do puke very well, so he climbed into my bed with Jordan and I slept - rather, laid - downstairs on the couch. Jordan got up to deliver newspapers the next morning and I then sat with Trey. He was still vomiting but I made sure to keep pushing fluids so he wouldn't be dehydrated. Surprisingly, no one else caught this flu-bug. I remember talking to my mom this night and told her how much he ate for supper - that he just couldn't get full. Then up everything comes. Knowing what I know now ... this was not the flu. This was diabetes.
As his pottying in the night continued into February, I remember looking up reasons why this would be happening to a 4 year old who had been toilet trained for two years already. Diabetes was listed as a possibility, but at the time I made light of it. I mean, if you google why your headache has lasted for two days, it probably says you have a brain tumor or brain cancer, right? However, I do remember Jordan saying at one time that it really could be diabetes as he remembers his Uncle Jeff saying that was one of his symptoms before he was diagnosed. I kept telling myself it was probably a UTI or bladder infection, but he would never complain of it hurting when he went. I reached out to Trey's daycare and asked if he was using the bathroom more often. She didn't seem to think so and said she believed the reason for his excess urination could be due to a growth spurt. When a child is 4 and you have 12 kids to keep track of, how would she really know if he was using the bathroom more than usual? But I had to ask.
It's now mid-March and we have a weekend planned to head to Waterloo, Iowa to watch Ronnie Hein play hockey. It's a long, 8+ hour drive, so we make a McDonald's drive-thru run somewhere along the way. Trey orders a 4 piece Chicken Nugget Happy Meal with a milk. I also always took a bottle of PowerAde or water along for these rides. He eats, falls asleep and 30 miles down the road mom has to use the bathroom. I tried waking Trey up to see if he needed to go potty but he was out cold. I return to the vehicle and see Trey awake and Jordan talking to him - but his pants and car seat were soaking wet. Jordan kept asking if he peed his pant and Trey was insistent he didn't. He was almost in tears as he was adamant he didn't pee and didn't know what happened. I dug into his suitcase to change his clothes and asked him a dozen times if he had to go potty as we finished our trek to Iowa. Now I was concerned. I look up diabetes symptoms again and I just knew in my heart, this is what we were dealing with.
Saturday morning we woke up and headed to Cedar Rapids which is about an hour from Waterloo. My cousins live there and we had planned on having lunch together at their house. I recall Trey eating several fruit-kabob skewers of strawberries and grapes as well as sucking down two juice boxes. He didn't eat much else food-wise. I have a photo of him sitting in a chair looking like he's about to fall asleep shortly after we ate. We said our good-byes, loaded up the car and headed back to Waterloo. Trey, once again, was passed out cold in the vehicle after 4 miles on the road.
We woke him up when we got to the hotel. He was so crabby and kept saying, "I'm tired. I don't want to go to the game. I'm too tired." Once in the hotel room, we made him go potty and then he crawled into the bed, covered up and was asleep within seconds. We didn't have time for a nap- we had to get to the game. We finally convinced him to get up and go so we could see Ronnie warm up. At the game he ate a hot-dog and drank two bottles of water. He also went to the bathroom 6 times. It wasn't like Trey to miss hockey just to go potty. I told Jordan that I would be making a phone call to the doctor Monday morning to get him checked for diabetes.
Monday morning - March 14th - comes along and I remember Trey didn't eat any breakfast. He sat on the couch with a sad face. He looked like he was either getting sick or like he hadn't slept in days. Jordan went to work and I took Trey to the appointment. When the nurse asked what we were there for, I said, "I want him tested for diabetes." and she looked at me like I was nuts. I told her some of the symptoms and she said OK, doc would come in and take a look.
We headed down to the lab area to first check his urine. When doctor Biegler came in the room, he was visibly upset. He said there did appear to be sugar in his urine and we were off to the lab again for a blood draw. Trey was a pro - flinched and said, "owie owie owie" a few times but was so brave. Mom, on the other hand, had tears falling down her face and was feeling sicker by the minute. We went back to our waiting room and I texted Jordan that he needed to come meet us. Dr Bieger came in again and confirmed what I knew ... "Trey has Type 1 Juvenile Diabetes. His blood sugar is 477." I sat there, staring at my 4 year old son, who didn't have a clue what he was even at the doctor for, and while tears filled my eyes as I listened to Dr Biegler explain that it's nothing I did or didn't do, it's no one's fault, he could live a long life; he did not have any ketones nor is he dehydrated ... I grabbed Trey and hugged him. I then mustered up enough composure and said, "I'm sorry I'm crying ... this is upsetting. I had gestational diabetes with him ... is there a link?" and Doc says he too felt like crying. He told me gestational is not linked nor is Type 2. He told me I'm a great mom for knowing my child's routine and getting him in to be checked after really the only symptom being excess peeing. He said many kids come in and they are so so so sick that they end up in the hospital or have large amounts of ketones. I remember I said to him, "I don't feel like a good mom right now at all." I then, again while crying, asked, "Can he play hockey? It might seem like a shallow question but that's all this kid has ever wanted to do is play hockey." "YES!" Doc said. Jordan arrived and we sat in the room staring at one another not really knowing what to do next or what to say. Doc ordered an A1C check on Trey's blood and it came back at 7.6. He went over some information on diabetes, insulin and nutrition. Gave him a shot of 6 units of Lantas and told us to come back tomorrow and we would discuss heading to Sioux Falls to meet with the Pediatric Endocrinologist there, Dr Gupta. Dr Biegler told me to not let Trey sleep alone that night and to really watch for anything out of the ordinary due to his Lantas shot and he would see us in the morning. That night after 5pm, Dr Biegler called me asking how we were doing and if Trey was still doing OK. He again told me that if anything seems fishy, get to the ER and don't be ashamed or embarrassed to do so.
We went back to the Dr office on Tuesday as instructed. A nurse was showing us how to use the meter to check Trey's sugars when Dr Biegler came in and said, "Did you hear the good news?? Dr Gupta wants to see you today so you need to leave now and head there." We went to Nan and Pop's house, asked them to take care of the dog and Delanie, went home to pack our bags for a three night stay at Avera McKennan and left.
We were at McKennan for two very long nights. Jordan and I met with nurses, doctors, dieticians, certified diabetes educators and others. We were given books and paperwork to look over. We were fed so much information in those two days and my brain was fried. I was short on sleep, patience and was scared to death about how I was going to leave the hospital with this child and keep him alive. I missed Delanie like crazy and I wanted to stuff a sock in the mouth off the child next door who was screaming after his broken arm surgery. The room on the other side of us had a very, very ill infant whose alarms kept going off which would put mom and dad in the hallway in tears. My own heart was breaking for my son, but then this family - I had to imagine their situation was worse than mine.
Trey captured the hearts of his nurses. He was so brave and so well behaved for being cooped up for so long. He ran out of bandaids for his finger pokes often but he made the nurses cards to make up for it. He would order food off the menu that Dr Gupta approved for him, but when it came, we knew it was nothing he would eat so the nurses let him have Mac n Cheese or sandwiches. Jordan and I took turns figuring out carbs and giving the shots of insulin as well as doing the finger pokes.
We gathered up all of our things we had accumulated and walked out of the hospital as parents of a Diabetic child and I can say quite honestly, that was one of the scariest times of my entire life.
Look how far we've come. 365 days down.
Sometime in January 2016, Trey began getting up to go potty in the night. He also had a couple times where he started to wet the bed, but woke himself up. Jordan and I chalked it up to him drinking too much before bed, so we told him no more drinks at bedtime. There was also a time in January that he came down with what we thought was the stomach flu. This mom doesn't do puke very well, so he climbed into my bed with Jordan and I slept - rather, laid - downstairs on the couch. Jordan got up to deliver newspapers the next morning and I then sat with Trey. He was still vomiting but I made sure to keep pushing fluids so he wouldn't be dehydrated. Surprisingly, no one else caught this flu-bug. I remember talking to my mom this night and told her how much he ate for supper - that he just couldn't get full. Then up everything comes. Knowing what I know now ... this was not the flu. This was diabetes.
As his pottying in the night continued into February, I remember looking up reasons why this would be happening to a 4 year old who had been toilet trained for two years already. Diabetes was listed as a possibility, but at the time I made light of it. I mean, if you google why your headache has lasted for two days, it probably says you have a brain tumor or brain cancer, right? However, I do remember Jordan saying at one time that it really could be diabetes as he remembers his Uncle Jeff saying that was one of his symptoms before he was diagnosed. I kept telling myself it was probably a UTI or bladder infection, but he would never complain of it hurting when he went. I reached out to Trey's daycare and asked if he was using the bathroom more often. She didn't seem to think so and said she believed the reason for his excess urination could be due to a growth spurt. When a child is 4 and you have 12 kids to keep track of, how would she really know if he was using the bathroom more than usual? But I had to ask.
It's now mid-March and we have a weekend planned to head to Waterloo, Iowa to watch Ronnie Hein play hockey. It's a long, 8+ hour drive, so we make a McDonald's drive-thru run somewhere along the way. Trey orders a 4 piece Chicken Nugget Happy Meal with a milk. I also always took a bottle of PowerAde or water along for these rides. He eats, falls asleep and 30 miles down the road mom has to use the bathroom. I tried waking Trey up to see if he needed to go potty but he was out cold. I return to the vehicle and see Trey awake and Jordan talking to him - but his pants and car seat were soaking wet. Jordan kept asking if he peed his pant and Trey was insistent he didn't. He was almost in tears as he was adamant he didn't pee and didn't know what happened. I dug into his suitcase to change his clothes and asked him a dozen times if he had to go potty as we finished our trek to Iowa. Now I was concerned. I look up diabetes symptoms again and I just knew in my heart, this is what we were dealing with.
Saturday morning we woke up and headed to Cedar Rapids which is about an hour from Waterloo. My cousins live there and we had planned on having lunch together at their house. I recall Trey eating several fruit-kabob skewers of strawberries and grapes as well as sucking down two juice boxes. He didn't eat much else food-wise. I have a photo of him sitting in a chair looking like he's about to fall asleep shortly after we ate. We said our good-byes, loaded up the car and headed back to Waterloo. Trey, once again, was passed out cold in the vehicle after 4 miles on the road.
We woke him up when we got to the hotel. He was so crabby and kept saying, "I'm tired. I don't want to go to the game. I'm too tired." Once in the hotel room, we made him go potty and then he crawled into the bed, covered up and was asleep within seconds. We didn't have time for a nap- we had to get to the game. We finally convinced him to get up and go so we could see Ronnie warm up. At the game he ate a hot-dog and drank two bottles of water. He also went to the bathroom 6 times. It wasn't like Trey to miss hockey just to go potty. I told Jordan that I would be making a phone call to the doctor Monday morning to get him checked for diabetes.
Monday morning - March 14th - comes along and I remember Trey didn't eat any breakfast. He sat on the couch with a sad face. He looked like he was either getting sick or like he hadn't slept in days. Jordan went to work and I took Trey to the appointment. When the nurse asked what we were there for, I said, "I want him tested for diabetes." and she looked at me like I was nuts. I told her some of the symptoms and she said OK, doc would come in and take a look.
We headed down to the lab area to first check his urine. When doctor Biegler came in the room, he was visibly upset. He said there did appear to be sugar in his urine and we were off to the lab again for a blood draw. Trey was a pro - flinched and said, "owie owie owie" a few times but was so brave. Mom, on the other hand, had tears falling down her face and was feeling sicker by the minute. We went back to our waiting room and I texted Jordan that he needed to come meet us. Dr Bieger came in again and confirmed what I knew ... "Trey has Type 1 Juvenile Diabetes. His blood sugar is 477." I sat there, staring at my 4 year old son, who didn't have a clue what he was even at the doctor for, and while tears filled my eyes as I listened to Dr Biegler explain that it's nothing I did or didn't do, it's no one's fault, he could live a long life; he did not have any ketones nor is he dehydrated ... I grabbed Trey and hugged him. I then mustered up enough composure and said, "I'm sorry I'm crying ... this is upsetting. I had gestational diabetes with him ... is there a link?" and Doc says he too felt like crying. He told me gestational is not linked nor is Type 2. He told me I'm a great mom for knowing my child's routine and getting him in to be checked after really the only symptom being excess peeing. He said many kids come in and they are so so so sick that they end up in the hospital or have large amounts of ketones. I remember I said to him, "I don't feel like a good mom right now at all." I then, again while crying, asked, "Can he play hockey? It might seem like a shallow question but that's all this kid has ever wanted to do is play hockey." "YES!" Doc said. Jordan arrived and we sat in the room staring at one another not really knowing what to do next or what to say. Doc ordered an A1C check on Trey's blood and it came back at 7.6. He went over some information on diabetes, insulin and nutrition. Gave him a shot of 6 units of Lantas and told us to come back tomorrow and we would discuss heading to Sioux Falls to meet with the Pediatric Endocrinologist there, Dr Gupta. Dr Biegler told me to not let Trey sleep alone that night and to really watch for anything out of the ordinary due to his Lantas shot and he would see us in the morning. That night after 5pm, Dr Biegler called me asking how we were doing and if Trey was still doing OK. He again told me that if anything seems fishy, get to the ER and don't be ashamed or embarrassed to do so.
We went back to the Dr office on Tuesday as instructed. A nurse was showing us how to use the meter to check Trey's sugars when Dr Biegler came in and said, "Did you hear the good news?? Dr Gupta wants to see you today so you need to leave now and head there." We went to Nan and Pop's house, asked them to take care of the dog and Delanie, went home to pack our bags for a three night stay at Avera McKennan and left.
We were at McKennan for two very long nights. Jordan and I met with nurses, doctors, dieticians, certified diabetes educators and others. We were given books and paperwork to look over. We were fed so much information in those two days and my brain was fried. I was short on sleep, patience and was scared to death about how I was going to leave the hospital with this child and keep him alive. I missed Delanie like crazy and I wanted to stuff a sock in the mouth off the child next door who was screaming after his broken arm surgery. The room on the other side of us had a very, very ill infant whose alarms kept going off which would put mom and dad in the hallway in tears. My own heart was breaking for my son, but then this family - I had to imagine their situation was worse than mine.
Trey captured the hearts of his nurses. He was so brave and so well behaved for being cooped up for so long. He ran out of bandaids for his finger pokes often but he made the nurses cards to make up for it. He would order food off the menu that Dr Gupta approved for him, but when it came, we knew it was nothing he would eat so the nurses let him have Mac n Cheese or sandwiches. Jordan and I took turns figuring out carbs and giving the shots of insulin as well as doing the finger pokes.
We gathered up all of our things we had accumulated and walked out of the hospital as parents of a Diabetic child and I can say quite honestly, that was one of the scariest times of my entire life.
Look how far we've come. 365 days down.
Monday, March 6, 2017
Anxiety ~ Emotions
As we approach the one year "diaversary" for Trey's diagnoses, I am full of anxiety. I recall when he was diagnosed, the range of emotions I went though was similar to grieving. Thankful, scared, sad, angry, happy, confused, etc.
I find myself going through that all again.
Thankful for all we've learned in the last year. Thankful we caught it early, before he was dealing with ketones or even in DKA. Thankful for Dr Gupta, his nurse Emily and for our new CDE Theresa. Thankful for the prayers. Thankful for my MOD'S Facebook group and other mom's who have offered advice and help when I have T1 questions. Thankful for fellow T1's like Uncle Jeff and Trey Bagwell who give Trey someone to relate to.
Scared every day. Scared of what blood sugars will be. Will he drop too low?? Will his organs be damaged as he gets older due to too many highs? Scared kids will make fun of him. Scared he will develop depression - as many T1's do.
Sad this happened to my little, innocent boy. Sad that a four year old was diagnosed with an uncurable disease. Sad. Sad about the whole damn thing.
Angry about the whole damn thing too. Angry that diabetes even exists. Angry that the world is so uneducated about T1. Angry that the price of diabetic supplies is astronomical. Flat out pissed off, quite honestly.
Happy that my little boy was able to make his dream of playing hockey possible. Happy that while it's not fun to have T1, it IS something that can be treated. Happy there are people working on a cure and better equipment advancements to help those who live with the disease. Happy that it hasn't slowed Trey down and that he actually handles himself and his disease with amazing grace. Happy that because of my talking about this journey, I've been able to help others.
Confused as to why T1 is becoming an epidemic. My personal thought is because of the foods and lifestyles we have now. The chemicals we have in our foods. We don't eat organic enough - and we have so many medicines to treat the simplest things like the common cold -- I firmly believe these things all damage us in the long run. Confused ... Diabetes is confusing in general!
It's a roller coaster. I hate rides. But this one one ride that I will never get off of, like it or not, because I'm right there with my little guy as he continues to fight for his life every single day.
I find myself going through that all again.
Thankful for all we've learned in the last year. Thankful we caught it early, before he was dealing with ketones or even in DKA. Thankful for Dr Gupta, his nurse Emily and for our new CDE Theresa. Thankful for the prayers. Thankful for my MOD'S Facebook group and other mom's who have offered advice and help when I have T1 questions. Thankful for fellow T1's like Uncle Jeff and Trey Bagwell who give Trey someone to relate to.
Scared every day. Scared of what blood sugars will be. Will he drop too low?? Will his organs be damaged as he gets older due to too many highs? Scared kids will make fun of him. Scared he will develop depression - as many T1's do.
Sad this happened to my little, innocent boy. Sad that a four year old was diagnosed with an uncurable disease. Sad. Sad about the whole damn thing.
Angry about the whole damn thing too. Angry that diabetes even exists. Angry that the world is so uneducated about T1. Angry that the price of diabetic supplies is astronomical. Flat out pissed off, quite honestly.
Happy that my little boy was able to make his dream of playing hockey possible. Happy that while it's not fun to have T1, it IS something that can be treated. Happy there are people working on a cure and better equipment advancements to help those who live with the disease. Happy that it hasn't slowed Trey down and that he actually handles himself and his disease with amazing grace. Happy that because of my talking about this journey, I've been able to help others.
Confused as to why T1 is becoming an epidemic. My personal thought is because of the foods and lifestyles we have now. The chemicals we have in our foods. We don't eat organic enough - and we have so many medicines to treat the simplest things like the common cold -- I firmly believe these things all damage us in the long run. Confused ... Diabetes is confusing in general!
It's a roller coaster. I hate rides. But this one one ride that I will never get off of, like it or not, because I'm right there with my little guy as he continues to fight for his life every single day.
Wednesday, February 22, 2017
Mission Accomplished
It is with tears in my eyes that I write this post.
I was sent a PM today on my Facebook account from a lady I do not know. "A friend of ours ~ their son, grade 6 is new to this and if I can help them in any way I would be so thankful for your help and knowledge thank you so much." I assumed it was regarding T1. She confirmed it. I accepted her friend request she sent me and then, naturally, creeped her Facebook page (Sorry Nicole!) and see that several of our mutual friends had commented on her status about who can help here with some T1 questions/information.
I cried.
I cried for the fact that upon us approaching our 1 year diaversary, another family is going through what we went through and it brought back all those memories and feelings. I then cried for the fact that as I have vowed to talk about the disease to educate others, my posts are being seen and some very sweet friends of mine have passed my name onto this family. It's what I promised myself and my son ... That I would educate others. So if I only help this family out by the little bit of information I have given them ... I've done my job. I'm not ashamed to say I'm proud of myself for that. I wish I could take away their fear and their confusion, but all I can do is sit here and guide them the best I can, through one of the darkest periods they will experience.
I've said it - Trey was given this disease for a reason. Just as Trey Bagwell was given the disease and ends up in Aberdeen South Dakota, of all places, to play hockey and inspire my own Trey The Hockey Player ... It's our turn. Maybe not for this particular family ... But we're on the right path, I'm certain.
I have to run ... Trey Bagwell is stopping by to pick up his energy bites, cookies and waffles I made him. T1's are a family ....
I was sent a PM today on my Facebook account from a lady I do not know. "A friend of ours ~ their son, grade 6 is new to this and if I can help them in any way I would be so thankful for your help and knowledge thank you so much." I assumed it was regarding T1. She confirmed it. I accepted her friend request she sent me and then, naturally, creeped her Facebook page (Sorry Nicole!) and see that several of our mutual friends had commented on her status about who can help here with some T1 questions/information.
I cried.
I cried for the fact that upon us approaching our 1 year diaversary, another family is going through what we went through and it brought back all those memories and feelings. I then cried for the fact that as I have vowed to talk about the disease to educate others, my posts are being seen and some very sweet friends of mine have passed my name onto this family. It's what I promised myself and my son ... That I would educate others. So if I only help this family out by the little bit of information I have given them ... I've done my job. I'm not ashamed to say I'm proud of myself for that. I wish I could take away their fear and their confusion, but all I can do is sit here and guide them the best I can, through one of the darkest periods they will experience.
I've said it - Trey was given this disease for a reason. Just as Trey Bagwell was given the disease and ends up in Aberdeen South Dakota, of all places, to play hockey and inspire my own Trey The Hockey Player ... It's our turn. Maybe not for this particular family ... But we're on the right path, I'm certain.
I have to run ... Trey Bagwell is stopping by to pick up his energy bites, cookies and waffles I made him. T1's are a family ....
Tuesday, February 21, 2017
Confidence has been found
Typically I don't make adjustments to Trey's insulin dosages that are set by his care team in Sioux Falls, but I took matters into my own hands yesterday.
After seeing Trey's graphs that we can download from the pump, I see that at 5am his blood sugar rises pretty significantly. They all this Dawn Phenom. I call it "Piss me off". So I changed his temp basal rate that starts at 7am, to 5am, which means at 5am he gets a bit more insulin automatically from the pump. I also see that no matter how many carbs he eats for supper, his sugar goes up and doesn't like to come down. I adjusted his ratio from 1:35 to 1:30 for now. I can also see via his graphs that at 8pm he starts to trend upwards. I will keep my eye on this for a few days and make necessary adjustments if need be.
We are almost a year into this. Up until this point I have been afraid to make changes and have always asked the SF team for help. I feel confident now to make minor adjustments. I see what his activity level, sleep patterns, and food intake are ... and I can see these amazing graphs that Medtronic has built into the pump (seriously -- amazingly good graphs and technology!). I don't need to wait for SF to make any changes. I have them all logged into a notebook that I will take to his next Endo appointment in March.
He's been running higher. Not drastically high, but not really below 200. I know that the only fix for this is more insulin. His activity level and his food has been the same. We haven't had crazy highs or crazy lows which would point me towards an illness ... and it's very possible he could be growing which would raise levels. Whatever the reason -- we need to get back down into range, which is 150.
Hard to believe we're almost at a year. Hard to believe it's taken me this long to make adjustments as I see fit, but on the flip side, too little insulin can kill him and yet too much insulin can kill him. Diabetes is probably the only disease that a parent is left to judge how much insulin to give their child - several times a day - without a firm dosage from a doctor. Scary.
After seeing Trey's graphs that we can download from the pump, I see that at 5am his blood sugar rises pretty significantly. They all this Dawn Phenom. I call it "Piss me off". So I changed his temp basal rate that starts at 7am, to 5am, which means at 5am he gets a bit more insulin automatically from the pump. I also see that no matter how many carbs he eats for supper, his sugar goes up and doesn't like to come down. I adjusted his ratio from 1:35 to 1:30 for now. I can also see via his graphs that at 8pm he starts to trend upwards. I will keep my eye on this for a few days and make necessary adjustments if need be.
We are almost a year into this. Up until this point I have been afraid to make changes and have always asked the SF team for help. I feel confident now to make minor adjustments. I see what his activity level, sleep patterns, and food intake are ... and I can see these amazing graphs that Medtronic has built into the pump (seriously -- amazingly good graphs and technology!). I don't need to wait for SF to make any changes. I have them all logged into a notebook that I will take to his next Endo appointment in March.
He's been running higher. Not drastically high, but not really below 200. I know that the only fix for this is more insulin. His activity level and his food has been the same. We haven't had crazy highs or crazy lows which would point me towards an illness ... and it's very possible he could be growing which would raise levels. Whatever the reason -- we need to get back down into range, which is 150.
Hard to believe we're almost at a year. Hard to believe it's taken me this long to make adjustments as I see fit, but on the flip side, too little insulin can kill him and yet too much insulin can kill him. Diabetes is probably the only disease that a parent is left to judge how much insulin to give their child - several times a day - without a firm dosage from a doctor. Scary.
Tuesday, February 14, 2017
11 Months ~ Valentines Day
Happy Valentines Day! I personally have always hated this holiday. I've often said, send me a dozen roses on a Tuesday in June and it will mean more than getting me a single thing on Valentine's Day.
Trey gave stickers instead of candy to his class today. Funny, it should be the other way around. Everyone give Trey stickers instead. Ha! There isn't a party in his class but they are allowed to eat some of their candy today, so his wonderful school nurse is keeping tabs on his intake and we've put a limit at 25 carbs and she will dose insulin to cover it. I'm beginning to hate holidays! Thankfully Trey is so good about having a few special treats and then foregoing the rest. I'm sure this won't always be the case, but so far it is.
Today is 11 months of this dreaded disease. I feel like we've come so far. I also feel defeated many times a month. I try to celebrate small victories - such as today when his low carb waffles didn't spike his sugars. We give high-fives when we get a dosage right for a food like pasta or pizza. We shed tears together when sugar is 300 and we feel frustrated together. We get angry when mom accidentally throws away the plunger to insert his new pump tube (yep .... I did.) but we then are thankful that Uncle Jeff has this damn disease too and we are able to use his plunger until ours arrives in the mail. $40 for that sucker ... Might as well have flushed $40 down the toilet when I accidentally threw it away. So mad at myself.
Next month marks 1 year. I don't know how I feel about it. My message board I am part of for mom's of diabetics suggests you celebrate it. They often treat it almost like a birthday -- buying gifts, having a good meal and even cake. Diaversary they call it. While it's not something I want to celebrate, (C'mon ... It was a terrible day) you celebrate a year of life. You survived the entire year with diabetes and that, truly, is a victory. Trey Bagwell's birthday is March 17th so I am going to see if we can possibly take him out for supper that week and we will celebrate both Trey's special days.
Just got a message -- 5 Hershey Kisses and a small sucker was Trey's treats of choice today. Now we watch Dexcom.
Trey gave stickers instead of candy to his class today. Funny, it should be the other way around. Everyone give Trey stickers instead. Ha! There isn't a party in his class but they are allowed to eat some of their candy today, so his wonderful school nurse is keeping tabs on his intake and we've put a limit at 25 carbs and she will dose insulin to cover it. I'm beginning to hate holidays! Thankfully Trey is so good about having a few special treats and then foregoing the rest. I'm sure this won't always be the case, but so far it is.
Today is 11 months of this dreaded disease. I feel like we've come so far. I also feel defeated many times a month. I try to celebrate small victories - such as today when his low carb waffles didn't spike his sugars. We give high-fives when we get a dosage right for a food like pasta or pizza. We shed tears together when sugar is 300 and we feel frustrated together. We get angry when mom accidentally throws away the plunger to insert his new pump tube (yep .... I did.) but we then are thankful that Uncle Jeff has this damn disease too and we are able to use his plunger until ours arrives in the mail. $40 for that sucker ... Might as well have flushed $40 down the toilet when I accidentally threw it away. So mad at myself.
Next month marks 1 year. I don't know how I feel about it. My message board I am part of for mom's of diabetics suggests you celebrate it. They often treat it almost like a birthday -- buying gifts, having a good meal and even cake. Diaversary they call it. While it's not something I want to celebrate, (C'mon ... It was a terrible day) you celebrate a year of life. You survived the entire year with diabetes and that, truly, is a victory. Trey Bagwell's birthday is March 17th so I am going to see if we can possibly take him out for supper that week and we will celebrate both Trey's special days.
Just got a message -- 5 Hershey Kisses and a small sucker was Trey's treats of choice today. Now we watch Dexcom.
Thursday, February 2, 2017
A Promise to Myself
Momma's got something on her mind so she comes to her blog, where she can lay it all out there.
I am not a perfect mother. We are not the perfect family. We eat McDonald's more that I'd like to admit. My kids are grounded more than THEY like to admit. I yell. I sometimes add some Captain Morgan to my Diet Coke at night. Jordan sometimes ignores the kids while he plays his PS4. My kids talk back and don't use their manner as much as I would prefer. We are flawed ... Every one of us. BUT ...
I love my kids more than anything in the world. I mean it when I say that all I have ever wanted to be is a mommy and that Delanie Kae is my dream come true (and yes, Trey Thomas too). (Please, keep reminding me of this as she has 10 years left in my house!!) Sometimes I allow my children to drink soda, sometimes I allow my children to get a toy from the store, sometimes I spend too much money so my kids can have something like a Kindle to play or a hockey game to go to. (Those Wings season tickets aren't cheap!!)
Where am I going with this ...??
I have often thought about being a billet parent to the Wings players. A billet family, aka Host family, houses a player. I love taking care of people. It would be fun, and challenging, to have a teenage boy in the house. I have heard heartwarming stories and have seen great bonds formed between billet families and hockey players and I have also heard some ... Well, let's just say not so fun stories as well. After having my own two kids and having a basement full of other's people's kids all day long, my thoughts of having a player have been absent. Until now.
Enter Trey Bagwell. An 18 year old kid living with Type 1 Diabetes, 1,100 miles away from his parents, just "Living the dream" as junior hockey players like to say. I've been in touch with his parents, Bob and Betty Bagwell and have asked how Trey's billet family handles the T1.
While the family knows that Trey has T1, they don't do anything about it. Betty's words to me were, "Trey has learned to adjust." This, to me, is not OK. Yes, we all have to learn to adjust to different things in life. But your job as a billet family is to take care of the kid in your household like he is your own son. If your own son had T1, would you perhaps make low carb meals? Would you switch out your white bread for whole wheat bread? Would you get on Pinterest and find low-carb recipes to make? I would like to think the answer to all of this is "YES". I know when my son was diaganosed the foods I bought every week at the store changed drastically. I never in my life would've bought Agave Nectar. Seriously. I have it now! Coconut flour?? Disgusting! Worse yet, coconut oil?? Barf. I hate everything and anything coconut ... Even tanning lotion.
Let me be clear. I do not personally know the people Bags lives with. I know they have always hosted players so I am certain they are good people. I need everyone to know I am not bashing or hating on these people. I'm simply saying, T1 moms know T1 struggles.
Let me be clear. I do not personally know the people Bags lives with. I know they have always hosted players so I am certain they are good people. I need everyone to know I am not bashing or hating on these people. I'm simply saying, T1 moms know T1 struggles.
Diabetics are tough to figure out. They pride themselves on being able to eat anything they want ... And it's true, they can. But it doesn't mean they SHOULD. Yes, Trey can eat white bread. He can eat white rice and eat McDonald's and have a DQ blizzard. He CAN ... But he SHOULDN'T.
I also know, and understand, that if you don't live the T1 life ... You don't understand it. You don't understand just how deadly it can be. You don't understand what too much exercise can do or what a simple hot dog bun can do to a person. Because you don't see the ins and outs of the disease. That's where this mom comes into play ... I have promised Trey that I would forever educate other's.
I need Trey Bagwell to live with me. I would make him the proper foods to keep him as healthy as he can be. To give him the energy and strength he needs to be a success both on and off the ice. Yep, he is 18, a legal adult, but he also is a T1 person who needs all the support and knowledge he can get. I Find myself wondering during hockey games "Wonder if he's high?" When he looks sluggish on the ice. I see him come off the ice and head to the locker room to confirm my thoughts of him either being high or low, but obviously not right. No one else would notice that. I've gotten messages from him that he's running high or low and we bounce ideas and reasons why off one another. We compare his numbers to my Trey's numbers. I've given him GrifGrips of Trey's to try out and sent him links to other diabetic supply pages that he might find useful. My brain is programmed for diabetes. I loved making Trey special cookies tha this mom used to make him because I knew he could eat them without worrying about his blood sugar going out of whack. I wish I could do more of it ... Because I get it.
So I promised myself this. If there is ever another Aberdeen Wing's player who has T1 ... He WILL live with me. I will see to it. There is no one that can care for a T1 kid like a T1 parent. That's a fact.
Thanks for reading.
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