I've always been more of an introvert than an extrovert. I don't mind keeping my circle small and on most days, I'd rather be home with my kids than out doing something that involves a crowd of people. Something I've realized since March is that I'm becoming MORE of an introvert now and quite honestly, I'm not sure that's good.
This blog is revolved around diabetes. The good, the bad, the ugly and hopefully sometimes, the positives. Diabetes has become our new life. I don't wish it upon anyone. I don't want sympathy, I want empathy. This was the hand we were dealt and as I've said, I will try to spin it around so something great comes from something horrible.
But life sucks sometimes, and life as a mother of a T1D child sucks. (Insert "poor Natalie" here right?!)
I used to enjoy a night at Lagers sipping on a Morgan Diet, bitching about my job, my kids, my husband and life in general. I needed that time away from everyday life. I needed to regroup and I enjoyed those couple of hours with some good friends. I relied on my Girls Night girls once a month to be Natalie, instead of Mom. I needed it.
I would have to say NOW more than EVER .... I need it. I need friends. I need a couple hours at Lagers. I need my monthly Girls Night gals. I need that hour long massage. I need ME time. I need FUN. Then reality sets in ... Who is going to watch the kids? Will they check Trey's sugars? Do they know what he can and cannot eat? What happens if he goes too low? Should I pack his whole backpack or will just his kit be sufficient? By the time I think everything through, I've talked myself into going anywhere. Fact is - it's easier to just stay home than to be out and about TRYING to have fun, but secretly dying inside because I'm so worried about my kid.
Diabetes is a 24/7 job. Even when Trey is sleeping, I check his CGM for his blood sugar number. I constantly watch the clock so I don't forget to have him do his finger poke 2 hours after his meal. I count carbs and plan our supper and lunches around what Trey can eat. When he goes to the bathroom, I sometimes have to check his urine for ketones. I don't sleep through the night anymore. When I hear Trey get up to use the bathroom at midnight, I grab my phone in a panick to see if his sugar is too high. When I see him in the morning I always ask "Did dad give you your shots yet?" Instead of "Good Morning buddy. How did you sleep?" It's always, always on my mind; and it's exhausting. So damn exhausting. Not the kind of exhausting you have from a long day with a screaming baby (yep, yesterday in fact!) and not the exhausting day you had from running that 5K you signed up for. Mentally exhausted. To the point where I lose track of the simplest things because I'm trying to remember at 5:30 Trey needs to check his sugar.
I don't know what to talk about to people. I feel like all I know about anymore is diabetes. But please, don't ask me, "How is Trey?" Because depending on the day, it is a loaded question. I appreciate your concern, but yet I don't know what you want me to say in return and sometimes the question reduces me to tears and sometimes it throws me into a fit of anger. I feel as if I go to Girls Night, I will have nothing to talk about. My life is diabetes. It's hard for me to think of sometimes else. It sucks, but that is the reality right now.
It's hard to talk about something that so many of your friends and relatives don't understand. It's not a diss to my friends and family - it's simply a fact. Being with my mother for a weekend, I made her handle Trey, and I know she was exhausted. My inlaws had Trey for a day and I could tell they were so overwhelmed. But until you live it, 24/7, you can't possibly understand or know. And I don't want to be out for drinks and bore you to death with talk of diabetes ... Because as much as I want to bring awareness, I also don't want to talk about it.
I almost have lost who I am. Or maybe, this is who I was supposed to be all along!? I know the sarcastic bitch is still here somewhere, she just has been sidelined by an injury, but I hope eventually, when she gets a grasp on this, she'll be back better than ever. I just hope that in the meantime, her Girls haven't forgotten about her because she will need them more than she ever has.
Wednesday, July 27, 2016
Monday, July 25, 2016
A Weekend Attitude Change
A couple of quick things ....
1) You can now put your email into the "Follow by Email" spot over to the right, and Blogger will email you a notice when I post something new.
2) I've reduced the main screen to just one post at a time. To read other older posts, please see the titles to the right under Trey's photograph.
3) Thanks to anyone who reads this. As I said in the very first post, this was meant for me to just get things off my brain and to possibly raise a little awareness to anyone who happened to stumble upon the blog. If you know me, you know I don't sugar coat anything - I like to tell it like it is, and this blog won't be anything less.
4) I apologize for grammatical errors. I had amazing English teachers in school but I never did see an A+
Since I've posted last, we've had some pretty cool and fun things I'd like so share.
Friday was a terrific day in the fact that Trey decided to poke his own finger. I wish I could explain my emotional state when he did this. You may think a finger poke isn't a big deal, but when you're five and you know it's going to sting when you do it ... It's a huge deal. I honestly cried because I was so proud of him. He now is able to do the whole process himself which has been awesome to watch. He gathered all the daycare kids around today and said, "watch this" as he did it start to finish. The kids have seen us do this before, so the fact he did it himself didn't impress them as much as it impressed me or him. Haha
Friday Trey's numbers ran pretty high and the same held true for Saturday as well. That's what's frustrating about diabetes - there is not always a known reason why sugars increase or decrease. This is my number 1 complaint ... Diabetes doesn't make sense. An extra dose of insulin brought him numbers down and we pushed fluids to help flush out the ketones in his urine as well. High sugars often mean ketones, but not always. In this case, it did. If his ketones would not go down, we would've made an ER visit so they could give him an IV of fluid to flush him out and keep him from going into Ketoacidoses which is deadly.
After a weekend of highs, my mind couldn't help but to wander back to the Low Carb High Fat diet craze. I did my own research and found some recipes that I thought maybe we needed to try. I'm so glad we did.
Fathead Pizza I talked about on my Facebook page. It's a recipe I've seen several times and I've read nothing but good reviews from even the pickiest kids. Trey liked it, I liked it, Jordan liked it, Delanie wanted the real stuff (as we all did, but we all agree this didn't turn out as bad as some expected! It's a keeper!)
Fathead Recipe
1 1/2 cups Shredded Mozzerella Cheese (I used Colby/Jack as it's all I had)
2 T Cream Cheese (I used 1/3 less fat)
3/4 c Almond Flour ($11/pound at Wal-Mart in baking isle)
1 egg
1 tsp xanthan gum (optional and I did NOT use this)
Garlic powder to taste
Sea salt
Preheat oven to 425*. Put cheeses into a microwave safe bowl and heat for 1 minute 20 seconds. Stir cheeses until mixed. Add Almond Flour, Egg and xanthan gum. If too stringy, heat another 30 seconds. Wet hands and form into a ball on a baking sheet with parchment paper. Spread out with wet hands to your preference of thin-ness. Poke crust all over with a fork, bake for 8 minutes. Add your pizza toppings and cook another 4+ minutes until the crust is as crunchy as you prefer.
You can also make this into a bun substitute, just break up the dough into smaller balls. It's quick, easy and healthy if you're not looking at fat content.
The other recipe we made was called Fat Bombs. This is for the sweet tooth! I tried it, spit it out. Delanie is my Hershey lover and she ate it but said, "This is terrible but I didn't want to tell Trey" and Trey ate four pieces thinking it's delicious which is wonderful.
Fat Bombs
3/4 cup melted coconut oil (baking isle)
9 1/2 T Almond Butter (by peanut butter in Walmart)
60 drops of liquid Stevia (baking isle)
3 T cocoa
9 T melted salted butter
Mix all together. Pour into mini muffin mold, a pan, candy mold (or whatever you have!) and put into freezer. These melt fast when not cold!
One Fat Bomb is 14 grams of fat, 145 calories, 1.5 grams of protein and 1.6 carbs.
If any of you make these, let me know if you like it! I have a few more items on my list to try such as pancakes and biscuits. I will post details of those when we get it made.
To finish, I have had much peace this weekend after finding an amazing Facebook support group. Reading post after post with real parents having the same real issues, thoughts and questions I have has made me really look at things different and even give myself a small pat on the back knowing that while I cannot always produce perfect sugars for my child, I am doing what I can do to keep him healthy, eating better and teaching him to make the right food choices along the way. Yeah, there will be days he devours a Snickers much to my dismay, but don't we all splurge a little every now and then?! I also read an amazing piece on insulin that has changed my thinking drastically. I see a child getting 40 units of insulin a day and I shriek in fear that this "drug" will harm him. In fact, it's quite the opposite .. We all have insulin in us (well, unless you're diabetic). Your body MAKES it, it's a hormone, you NEED it to live. If you don't produce insulin, you go into Keto and you die. So how I view insulin is different and I'm thankful for that.
PS: my other highlight of the weekend was reading that a mom donates her "expired" insulin to her local vet. I contacted our Vet office and they indeed can use it!!! How awesome!! No more tossing away 150 units of insulin a month!!!!!!!!
1) You can now put your email into the "Follow by Email" spot over to the right, and Blogger will email you a notice when I post something new.
2) I've reduced the main screen to just one post at a time. To read other older posts, please see the titles to the right under Trey's photograph.
3) Thanks to anyone who reads this. As I said in the very first post, this was meant for me to just get things off my brain and to possibly raise a little awareness to anyone who happened to stumble upon the blog. If you know me, you know I don't sugar coat anything - I like to tell it like it is, and this blog won't be anything less.
4) I apologize for grammatical errors. I had amazing English teachers in school but I never did see an A+
Since I've posted last, we've had some pretty cool and fun things I'd like so share.
Friday was a terrific day in the fact that Trey decided to poke his own finger. I wish I could explain my emotional state when he did this. You may think a finger poke isn't a big deal, but when you're five and you know it's going to sting when you do it ... It's a huge deal. I honestly cried because I was so proud of him. He now is able to do the whole process himself which has been awesome to watch. He gathered all the daycare kids around today and said, "watch this" as he did it start to finish. The kids have seen us do this before, so the fact he did it himself didn't impress them as much as it impressed me or him. Haha
Friday Trey's numbers ran pretty high and the same held true for Saturday as well. That's what's frustrating about diabetes - there is not always a known reason why sugars increase or decrease. This is my number 1 complaint ... Diabetes doesn't make sense. An extra dose of insulin brought him numbers down and we pushed fluids to help flush out the ketones in his urine as well. High sugars often mean ketones, but not always. In this case, it did. If his ketones would not go down, we would've made an ER visit so they could give him an IV of fluid to flush him out and keep him from going into Ketoacidoses which is deadly.
After a weekend of highs, my mind couldn't help but to wander back to the Low Carb High Fat diet craze. I did my own research and found some recipes that I thought maybe we needed to try. I'm so glad we did.
Fathead Pizza I talked about on my Facebook page. It's a recipe I've seen several times and I've read nothing but good reviews from even the pickiest kids. Trey liked it, I liked it, Jordan liked it, Delanie wanted the real stuff (as we all did, but we all agree this didn't turn out as bad as some expected! It's a keeper!)
Fathead Recipe
1 1/2 cups Shredded Mozzerella Cheese (I used Colby/Jack as it's all I had)
2 T Cream Cheese (I used 1/3 less fat)
3/4 c Almond Flour ($11/pound at Wal-Mart in baking isle)
1 egg
1 tsp xanthan gum (optional and I did NOT use this)
Garlic powder to taste
Sea salt
Preheat oven to 425*. Put cheeses into a microwave safe bowl and heat for 1 minute 20 seconds. Stir cheeses until mixed. Add Almond Flour, Egg and xanthan gum. If too stringy, heat another 30 seconds. Wet hands and form into a ball on a baking sheet with parchment paper. Spread out with wet hands to your preference of thin-ness. Poke crust all over with a fork, bake for 8 minutes. Add your pizza toppings and cook another 4+ minutes until the crust is as crunchy as you prefer.
You can also make this into a bun substitute, just break up the dough into smaller balls. It's quick, easy and healthy if you're not looking at fat content.
The other recipe we made was called Fat Bombs. This is for the sweet tooth! I tried it, spit it out. Delanie is my Hershey lover and she ate it but said, "This is terrible but I didn't want to tell Trey" and Trey ate four pieces thinking it's delicious which is wonderful.
Fat Bombs
3/4 cup melted coconut oil (baking isle)
9 1/2 T Almond Butter (by peanut butter in Walmart)
60 drops of liquid Stevia (baking isle)
3 T cocoa
9 T melted salted butter
Mix all together. Pour into mini muffin mold, a pan, candy mold (or whatever you have!) and put into freezer. These melt fast when not cold!
One Fat Bomb is 14 grams of fat, 145 calories, 1.5 grams of protein and 1.6 carbs.
If any of you make these, let me know if you like it! I have a few more items on my list to try such as pancakes and biscuits. I will post details of those when we get it made.
To finish, I have had much peace this weekend after finding an amazing Facebook support group. Reading post after post with real parents having the same real issues, thoughts and questions I have has made me really look at things different and even give myself a small pat on the back knowing that while I cannot always produce perfect sugars for my child, I am doing what I can do to keep him healthy, eating better and teaching him to make the right food choices along the way. Yeah, there will be days he devours a Snickers much to my dismay, but don't we all splurge a little every now and then?! I also read an amazing piece on insulin that has changed my thinking drastically. I see a child getting 40 units of insulin a day and I shriek in fear that this "drug" will harm him. In fact, it's quite the opposite .. We all have insulin in us (well, unless you're diabetic). Your body MAKES it, it's a hormone, you NEED it to live. If you don't produce insulin, you go into Keto and you die. So how I view insulin is different and I'm thankful for that.
PS: my other highlight of the weekend was reading that a mom donates her "expired" insulin to her local vet. I contacted our Vet office and they indeed can use it!!! How awesome!! No more tossing away 150 units of insulin a month!!!!!!!!
Thursday, July 21, 2016
5 weeks
It's that time ... Back to School. While usually this is a bittersweet occasion for me, this year I'm feeling sick to my stomach about it. I always knew sending my baby girl to Kindergarten would be tough on me - and it was. I then said I would have no problems sending Trey to school - wrong.
In five weeks Trey will be attending all day, every day kindergarten. It's not sad because he's my baby boy, or even sad because I want to keep him home with me to help me with daycare (OK ... So maybe that's a little true), but I'm sending my chronically ill child to school and asking someone else to watch over him for 7 hours a day.
I've seen posts about mom's buying their children's school supplies and how 'difficult' that is. Let me tell you, I wish buying school supplies was all I had to worry about sending to school with my child.
As soon as we had Trey's diaganoses, we informed the school district. OMT did not have a school nurse on staff, but they do now. We spoke with the principal briefly about Trey coming to Kindergarten and he would need special requirements that we would talk more in depth with as the time got closer. The school does in fact have WIFI, so we will be able to connect his CGM to it allowing it to send me and Jordan his blood sugar numbers during the day.
Trey's medical team from Sioux Falls writes up a healthcare plan for the school to have. It has direct orders from his Endocrinoligst as a to how to care for him. Jordan and I will need to meet with the school and discuss with the teacher, nurse and principal how to do what needs to be done and what to look for in case of a high or a low sugar reading. We will have a Care Box in both the nurse's office as well as his classroom with extra medical supplies, snacks, juice boxes, sugar tablets and the (God forbid we need it) Glucagon kit. He will have to take extra water bottles and his own snacks in case his sugar is too high to have the classroom snack. He will have to take time out of his learning in order to get his sugar checked. When and where do they plan on doing this? He will need to have an insulin shot after his lunch - will he miss the recess? (Because that's not fair). If his sugar is too high or too low, he will loose the ability to concentrate. If his sugar is above 250 at PE time, he probably cannot partake in the actives as exercise above 250 can make you go ever higher, but would have to sit and watch the other kids
You see, when my child is in my care 24 hours a day, I know what to look for and how to react. I know what foods to try in an event of a high or a low. I don't know everything, I never will, but I'm turning my care over to a whole school full of students, teachers and staff and trusting them with my little guy. Trusting they will do their research and know what to look for in signs or what to do if he drops over during PE. If he starts to get shaking in Music, I hope he knows to tell the teacher or she can see it. In a classroom of 25 kindergartens, I know the teacher cannot focus on Trey. I don't expect her to. It's not her JOB to focus on one kid. But I hope it's always in the back of her mind and I hope as the year goes on, she too is able to know the signs.
There is a 504 Plan which is part of the American Disability Act which protects my child in school. It makes sure he is not left out of any activities because of his diabetes. I'm sure the school would never do such a thing, however, I will not wait to find out. We as parents have to be strong for our kids and fight for our kids. If I don't stand up now for Trey as he enters kindergarten, how will he ever learn to stand up for himself and have that voice? This is an agreement written up by the school and parents.
So 'back to school' isn't cool for me this year. I'm not ready for it. I want to keep my baby home where I can watch him and protect him. No one can take care of your baby like his/her mom can. It's going to be very hard for me, I will not lie. I will continuously wonder "did she check his sugar?" Or "is he going to eat cheese or can he have trail mix" at his snack.
5 weeks ..... 5 weeks to worry about it, pray about it, and then a whole new set of worry sets in .....
In five weeks Trey will be attending all day, every day kindergarten. It's not sad because he's my baby boy, or even sad because I want to keep him home with me to help me with daycare (OK ... So maybe that's a little true), but I'm sending my chronically ill child to school and asking someone else to watch over him for 7 hours a day.
I've seen posts about mom's buying their children's school supplies and how 'difficult' that is. Let me tell you, I wish buying school supplies was all I had to worry about sending to school with my child.
As soon as we had Trey's diaganoses, we informed the school district. OMT did not have a school nurse on staff, but they do now. We spoke with the principal briefly about Trey coming to Kindergarten and he would need special requirements that we would talk more in depth with as the time got closer. The school does in fact have WIFI, so we will be able to connect his CGM to it allowing it to send me and Jordan his blood sugar numbers during the day.
Trey's medical team from Sioux Falls writes up a healthcare plan for the school to have. It has direct orders from his Endocrinoligst as a to how to care for him. Jordan and I will need to meet with the school and discuss with the teacher, nurse and principal how to do what needs to be done and what to look for in case of a high or a low sugar reading. We will have a Care Box in both the nurse's office as well as his classroom with extra medical supplies, snacks, juice boxes, sugar tablets and the (God forbid we need it) Glucagon kit. He will have to take extra water bottles and his own snacks in case his sugar is too high to have the classroom snack. He will have to take time out of his learning in order to get his sugar checked. When and where do they plan on doing this? He will need to have an insulin shot after his lunch - will he miss the recess? (Because that's not fair). If his sugar is too high or too low, he will loose the ability to concentrate. If his sugar is above 250 at PE time, he probably cannot partake in the actives as exercise above 250 can make you go ever higher, but would have to sit and watch the other kids
You see, when my child is in my care 24 hours a day, I know what to look for and how to react. I know what foods to try in an event of a high or a low. I don't know everything, I never will, but I'm turning my care over to a whole school full of students, teachers and staff and trusting them with my little guy. Trusting they will do their research and know what to look for in signs or what to do if he drops over during PE. If he starts to get shaking in Music, I hope he knows to tell the teacher or she can see it. In a classroom of 25 kindergartens, I know the teacher cannot focus on Trey. I don't expect her to. It's not her JOB to focus on one kid. But I hope it's always in the back of her mind and I hope as the year goes on, she too is able to know the signs.
There is a 504 Plan which is part of the American Disability Act which protects my child in school. It makes sure he is not left out of any activities because of his diabetes. I'm sure the school would never do such a thing, however, I will not wait to find out. We as parents have to be strong for our kids and fight for our kids. If I don't stand up now for Trey as he enters kindergarten, how will he ever learn to stand up for himself and have that voice? This is an agreement written up by the school and parents.
So 'back to school' isn't cool for me this year. I'm not ready for it. I want to keep my baby home where I can watch him and protect him. No one can take care of your baby like his/her mom can. It's going to be very hard for me, I will not lie. I will continuously wonder "did she check his sugar?" Or "is he going to eat cheese or can he have trail mix" at his snack.
5 weeks ..... 5 weeks to worry about it, pray about it, and then a whole new set of worry sets in .....
Monday, July 18, 2016
How many Carbs?!
I've been short on sleep the past couple weeks. I have always been a person who gets too much on their mind and there comes a point where I can't even process it all. I had that moment.
I follow a blog on Facebook about a kid named River, who also has Type 1 Diabetes. He's an 8 year old boy, lives in Sioux Falls, sees the same Doctor as we do and has been a diabetic since age 5. His mom writes a raw story about their struggles and I admire her for not sugar coating it. It's important to know she doesn't do it for attention, she does it to raise awareness because if you do not have to deal with diabetes 24/7 - you don't know the struggles. A couple weeks ago his mom said she was tired of the roller coaster of high/low blood sugar levels and decided to cut his carb intake. I was intrigued! I, too, had cut Trey's carb intake a few weeks prior, so I wanted to see what she meant and how she cut back. What I found baffled me. I cut Trey's carbs to 20 per meal (except breakfast was lower). That 20 seemed to do really well for Trey, keeping his sugar where it should be. When we told his doctor and Jenny about this, they jumped all over me. NOT OK I was told. Kids need carbs to develop and be healthy! They wanted me to allow him to eat anything he wanted.
So as I read about River's good luck with this low carb, what I discovered was he ate 6 carbs for breakfast, 12 for lunch and 12 for supper. My eyes squinted and my brain really started to spin. 12 carbs is NOT much. I knew this wasn't the right option for Trey (at least not YET) although River's mom had a lot of support. A low carb/high fat diet was a great idea many people had said. I struggled with it and even though it wasn't my child, I lost sleep.
When I think about it, we have cut out so many carbs already. Bread slices (15 carbs) and buns (30 carbs) are few and far between; cereal (around 20 carbs for 3/4c) is not consumed for two quick examples. Baked goods, candy, even milk!
Trey used to eat fruit snacks like no one's business. It was nothing for him to sit down and have 3 bags for a snack (at 20g each!). I would even buy the "all fruit" ones thinking they were healthy. WRONG. We had glazed donuts every weekend for breakfast/snacks. Not anymore. He wanted cookies? Sure ... Here is 6 Oreo's and a glass of milk to dunk them in.
We've changed our habits.
When I take my child to the store to pick out his snacks, he now chooses beef sticks, cheese sticks, almonds, PowerAde Zero, occasiaional Cheeze-it's, cheese balls and fresh fruit along with broccoli.
The most amazing part for me is that he doesn't even TRY to sneak something in the cart. He doesn't beg or cry or plead with me to get Oreo's instead of Cheese-It's. He's learning to check the label of foods to see how many carbs there is. He knows it has to be under 20. I allow him to have bites of things he really wants, such as a candy bar. He got a York bar over 2 weeks ago and he's had one bite of it. It was enough to satisfy him, but not enough to raise his sugar drastically. Yesterday his great grandma gave him a large chocolate covered rice crispy bar and he knew he had to ask before he could open it or eat it. After taking his sugar, I allowed him to have 1/2 of the bar, for 15 carbs. He ate it like he was eating a little piece of Heaven. He never asked for the rest of it, never cried when I told him he could have half ... He ate what he could and was happy with that.
I don't know about you, but I personally find that remarkable for a five year old. It's hard to not feel sorry for him. I try not to let it show, but I shed tears over my little guy all the time. When I think of him going to school in a few weeks and the kids all having their snack together ... But my little guy whips out a piece of string cheese instead of a sugary yummy treat. Doesn't seem fair. When his class wins a popcorn and juice party. He can have a little popcorn and no juice. When his friend has a birthday party with Hawaiian Punch and Birthday Cake, he can probably have a little piece of cake (no frosting) and again, no juice.
Carbs are part of our every day discussion now ..... How many carbs is too many carbs?
Tuesday, July 5, 2016
16 Weeks
16 weeks. 16 weeks ago we were sitting at Avera McKennan Hospital in Sioux Falls waiting to be discharged to come home and resume our 'new' lives.
I was anxious and terrified. Three days prior my son was diaganosed with Type 1 Diabetes, an auto-immune disease. Two days spent at the hospital in Sioux Falls with information shoved down our throats and functioning on 4-5 hours of sleep each night and now you want to send me home with $500 of supplies to keep my kid alive?
Terrified.
16 weeks has felt like 5 years. Diabetes is no joke. Those commercials on TV about "take this pill to help you with your diabetes" are a (bleep) joke. They anger me. Type 1 diabetes and Type 2 diabetes are so totally different that I hate it when someone tries to compare the two. I had gestational diabetes with both my pregnancies and the only information that is relativity the same for T1 is watching your carbohydrate intake. THAT'S IT.
I have to prick my 5 year old sons finger at least six times a day. I have to change out his Continuous Glucose Montior (CGM) once a week. This is a device that is inserted into this stomach with a flexible needle, attached to it which checks his sugar level in the tissue below the skin. While the sugar level in the blood and the sugar level in the tissue are not always the same, it gives you a pretty good idea as to where the level is at without having a do a finger poke. I give my son 4 shots a day. You should see his stomach and his fingertips. Scared for life.
I've spent hours upon hours reading up on how to keep sugars low. I've read and researched the benefits of proteins and carbohydrates and have written out a list of good vs bad foods along with the carb counts. I've typed up a generic letter for the grandparents so when they are with Trey, they know what to do and what to look for. We've been in contact with his doctor regarding ketones in his urine. We have had several phone calls with his diabetes educator, Jenny, about changing his carb ratios per meal so we know how much insulin to give him.
A mother's job is to protect her children from harm. You hate it when your child gets the flu and you wish it was you puking your guts out instead of your poor, helpless, child. Stab him/her in the stomach four times a day. Squeeze blood from his/her finger six times a day. Watch the CGM go from 120 to over 300 in a matter of 30 minutes because you fed your child lunch. Tell your five year old kid "no, you can't have more Mac-n-cheese because you have had enough carbs" and see the tears form in their eyes.
Excuse my French but fuck you diabetes. FUCK YOU. You've taken my precious, innocent little boy and you've turned him into a SICK child who relies on needles to save his life.
You've latched onto my bank account because of the two types of insulin, needles, test strips, ketone strips, alcohol wipes, glucagon and CGM that he requires to keep him alive every single day. You've put him at risk for other auto-immune diseases such as Celiac Disease. Continuous high blood sugars could mean internal organ damage later in life. His kidneys and his eyes could fail him. He could lose feeling in his feet and legs. Hell, he could have legs amputated due to poor circulation caused by blood sugars. You've turned me into a freaked out mom who is constantly asking her 5 year old "What is your number? Did you eat anything? Do you feel ok?" You've turned my nights into sleepless nights full of nightmares and worry.
There is no doubt that my son has handled this much better than I have. "He will never know life without it" ... Shut up. "At least he is young." Are you kidding? He probably can't have the birthday treats at school, birthday cake at his best friends b-day party, the juice/punch at the party and let's not even talk about what alcohol can do to him when he starts trying that out. "He can grow out of it, right?" Get a clue.
What DOES make me happy is that there are finally people willing to spend some money to support the Juvenile Diabetes Research Foundation (JDRF) and we are well on our way to finding a CURE for diabetes. They have done some clinical trials for the artificial pancreas and are now starting trials on inserting clean beta insulin producing cells back into the diabetic person. So much hope.
I've realized the last 16 weeks so many things. 1) I have one hell of an amazing son who is so much stronger than he knows 2) I did not miss the sleepless nights back when he was an infant 3) Diabetes doesn't make any sense. What happens today isn't what happens tomorrow 4) There isn't enough money in the world 5) Medical insurance is worth every penny 6) My math skills still suck 7) People are very uneducated about Type 1 diabetes 8) A juice box can save my kids life when his sugar is too low 9) I, in fact, can stick my son with a needle 10) I f'n HATE diabetes
I was anxious and terrified. Three days prior my son was diaganosed with Type 1 Diabetes, an auto-immune disease. Two days spent at the hospital in Sioux Falls with information shoved down our throats and functioning on 4-5 hours of sleep each night and now you want to send me home with $500 of supplies to keep my kid alive?
Terrified.
16 weeks has felt like 5 years. Diabetes is no joke. Those commercials on TV about "take this pill to help you with your diabetes" are a (bleep) joke. They anger me. Type 1 diabetes and Type 2 diabetes are so totally different that I hate it when someone tries to compare the two. I had gestational diabetes with both my pregnancies and the only information that is relativity the same for T1 is watching your carbohydrate intake. THAT'S IT.
I have to prick my 5 year old sons finger at least six times a day. I have to change out his Continuous Glucose Montior (CGM) once a week. This is a device that is inserted into this stomach with a flexible needle, attached to it which checks his sugar level in the tissue below the skin. While the sugar level in the blood and the sugar level in the tissue are not always the same, it gives you a pretty good idea as to where the level is at without having a do a finger poke. I give my son 4 shots a day. You should see his stomach and his fingertips. Scared for life.
I've spent hours upon hours reading up on how to keep sugars low. I've read and researched the benefits of proteins and carbohydrates and have written out a list of good vs bad foods along with the carb counts. I've typed up a generic letter for the grandparents so when they are with Trey, they know what to do and what to look for. We've been in contact with his doctor regarding ketones in his urine. We have had several phone calls with his diabetes educator, Jenny, about changing his carb ratios per meal so we know how much insulin to give him.
A mother's job is to protect her children from harm. You hate it when your child gets the flu and you wish it was you puking your guts out instead of your poor, helpless, child. Stab him/her in the stomach four times a day. Squeeze blood from his/her finger six times a day. Watch the CGM go from 120 to over 300 in a matter of 30 minutes because you fed your child lunch. Tell your five year old kid "no, you can't have more Mac-n-cheese because you have had enough carbs" and see the tears form in their eyes.
Excuse my French but fuck you diabetes. FUCK YOU. You've taken my precious, innocent little boy and you've turned him into a SICK child who relies on needles to save his life.
You've latched onto my bank account because of the two types of insulin, needles, test strips, ketone strips, alcohol wipes, glucagon and CGM that he requires to keep him alive every single day. You've put him at risk for other auto-immune diseases such as Celiac Disease. Continuous high blood sugars could mean internal organ damage later in life. His kidneys and his eyes could fail him. He could lose feeling in his feet and legs. Hell, he could have legs amputated due to poor circulation caused by blood sugars. You've turned me into a freaked out mom who is constantly asking her 5 year old "What is your number? Did you eat anything? Do you feel ok?" You've turned my nights into sleepless nights full of nightmares and worry.
There is no doubt that my son has handled this much better than I have. "He will never know life without it" ... Shut up. "At least he is young." Are you kidding? He probably can't have the birthday treats at school, birthday cake at his best friends b-day party, the juice/punch at the party and let's not even talk about what alcohol can do to him when he starts trying that out. "He can grow out of it, right?" Get a clue.
What DOES make me happy is that there are finally people willing to spend some money to support the Juvenile Diabetes Research Foundation (JDRF) and we are well on our way to finding a CURE for diabetes. They have done some clinical trials for the artificial pancreas and are now starting trials on inserting clean beta insulin producing cells back into the diabetic person. So much hope.
I've realized the last 16 weeks so many things. 1) I have one hell of an amazing son who is so much stronger than he knows 2) I did not miss the sleepless nights back when he was an infant 3) Diabetes doesn't make any sense. What happens today isn't what happens tomorrow 4) There isn't enough money in the world 5) Medical insurance is worth every penny 6) My math skills still suck 7) People are very uneducated about Type 1 diabetes 8) A juice box can save my kids life when his sugar is too low 9) I, in fact, can stick my son with a needle 10) I f'n HATE diabetes
Did you know?
* You cannot outgrow Type 1 Diabetes (T1D)
* Each year more than 15,000 children AND 15,000 adults in the US find out they have T1D. That's about 40 kids and 40 adults each day.
* Researchers do not know what causes T1D, although they do have a few clues such as your genetic make-up.
* T1D is far less common than type 2. About 90% of people with diabetes have type 2.
* Many famous people have T1D including: Jay Cutler (former Bears QB), Ron Santo (Chicago Cubs player), Halle Berry (although she claims she cured herself), Mary Tyler Moore, Nick Jonas and Max Domi (NHL player) just to name a few.
* There is no cure for T1D
* Kidney failure and heart disease are common illnesses associated with T1D along with retinopathy.
* Diabetes is more common in white people than in African-American people.
My not-so-healthy son
On March 14th I heard words I didn't want to hear "Your son has Type 1 Diabetes". To say I was surprised isn't true, I had an inkling he had it, which is why I took him to the doctor and asked him to be tested for it. To say our lives are forever changed is 100% accurate. What a whirlwind of 16 weeks we've had. I'm going to spare you details at this time, but with all these changes happening in my life, I've decided I needed to start up a blog again.
I'll be posting about diabetes, because quite frankly, diabetes has become a 24/7 job. While it's a treatable disease, there is no cure, and never before did I really care or think much about it, but now that I'm living the nightmare and seeing my son get needles stuck in his body 12ish time a day ... I realize how ignorant I was. I will become an expert on this fucking disease real quick. It's my mission to keep my son as healthy as I can and allow him to continue to follow his dreams of playing hockey at a high level. I'll be the mom on the bench checking blood sugar levels and handing him a snack in the middle of the period to keep his sugar level up. I'll be THAT mom. The helicopter mom. The mom who constantly worries about her son's blood sugar level. Who will not sleep a wink the first time he stays overnight away from home. The mom who will constantly ask him if he ate, what he ate, if he took his shot, how he feels, etc. As if we didn't already have a close bond ... This has really made it closer yet.
*********************************************************************************
I ran across a blog a mother wrote about her T1D daughter who was diaganosed at age three. She nailed it man ... Everything I've thought and felt and have wanted to say - she said it. I don't want to copy her post, but I feel the need to share what I can relate to.
I hate the question "How's Trey doing?" While I know people mean well, I don't know how to answer it. Typically I say "Good", but I guess I don't know if that is the honest answer. While it seems like such a simple question, there isn't a simple answer. The first few times people asked I would shrug and say "I don't know I guess" and I got looks of horror or confusion from people, so now I just say "good" and that seems to pacify everyone.
If you don't live with diabetes 24/7, then you don't know. You can't know, and for me to try to explain it to you is about like giving a cat a bath. But I have to try. I have to try to give everyone I know as much information as I can and make it as simple as I can - even though there is NOTHING simple about T1D.
T1D is an autoimmune disease. It isn't caused by eating too much sugar, it's not because of my Gestational Diabetes while pregnant with him and there is no cure for it. Insulin is not a cure. (More on that later).
I need you to know ...
- there is no "good" or "bad" kind of diabetes
- you can't take your medicine and forget about it. It's not the flu that you deal with for 24 hours and then it's over. It's not a week long cold and then you're better.
- I think about diabetes 24/7. I honestly forgot to pick up my daughter from her Papa's house one day because my mind was so cloudy from lack of sleep, blood sugar numbers, checking the clock to see when the next blood sugar check was supposed to be, etc.
- diabetes is not something that is black and white. It's gray, so very gray. It truly doesn't make any sense as to why a meal today raises the blood sugar level or why tomorrow that very same meal drops the blood sugar number. Diabetes is changing, constantly.
- insulin shots are not a cure. To calculate insulin is not a+b=c. It's very complicated and in fact, can be deadly. Yes, we all die sometime from something, but I don't mean he will die from diabetes when he's 70, he can die from it TODAY if we don't take care of him the best we can.
- while we haven't ran into this yet, having an illness such as stomach flu or common cold will wreak havoc on blood sugar numbers. Trey can very easily shoot very high or drop very low in just mere hours and it can land him in the hospital or worse yet, kill him.
- Trey will have an insulin pump ... eventually. That was one of the fist questions everyone asked, and neither J or myself really had even gotten that far in our conversations with the specialists in SF. There is so much more to learn before a pump is discussed. What everyone NEEDS to know about the pump is that while it will avoid the insulin shots, it's still not a cure. You still have to tell the pump how much insulin to give which means you still have to figure our the proper ratios and all that jazz. Convenient in some aspects, yes ... But it doesn't allow mom to sleep any better at night or stop the 8 finger pokes a day checking blood sugar levels. And since it's a machine, it can quit anytime. We have to know how to give insulin manually before doctor will implant a pump.
- everything Trey does affects his sugar levels. The foods he eats, the exercise he gets, the stress he's under, the illness brewing inside his body, nerves, excitement, hormones.
- Trey can eat anything he wants. Yes, even birthday cake or suckers.
- sugar-free isn't always better.
- his blood sugar must be checked BEFORE he eats. Not after, not even after a few bites. BEFORE
- trying to be the perfect pancreas for him is impossible
- I don't want you to pity him or our family. I want you to FEEL for us and help find a cure with your empathy.
- having diabetes cost A LOT of money.
- I am exhausted, mentally. I am crabby. I feel as if I am going through the stages of grief.
- I too was once ignorant to how severe Type 1 Diabetes is. Educate yourself and educate others.
- this has been a life changing event. Nothing was once as easy as it was. Even a trip to the store must be planned around a blood sugar check or meal time.
- people are going to think I am very over protective and that's fine. Until YOUR child is diaganosed with a deadly disease, you can think whatever you want. When their life lies in your hands and your calculations and your medical knowledge ... Then judge me.
- PLEASE do not compare T1D to Type 2. It's not the same. Do your research. It infuriates me when people say it's the same.
- I said it myself to try to make myself feel better, but since I've found it to be annoying when someone says, "At least he got it young so he won't know life before it." Yes, because every 4 year old should have to go through what he's gone through. It's not 'good', it's sad.
- I'm doing everything I possibly can to the very best of my ability. I have given this disease my full attention. I've lost weight, lost sleep, lost my fricking mind because of this. I've cried enough tears to fill Amsden Lake. I've felt guilty that I can't take away this disease for him and that I didn't catch it even sooner than I did. I hate poking his fingers to draw blood. I hate giving his insulin shots to him. I hate having to tell him, "No, you can't eat that right now. You have to wait 30 minutes." I hate seeing his sad face. I hate that he has to live with this forever and that there is no medical reason why he has it. I hate that there is no cure for it. I hate it.
- I do know this: having diabetes makes you strong * things do get better * there will be a cure one day - I just hope my son is alive when that cure comes * it always hurts * he will do great things in his life despite his illness * I will never give up or give in - I will FIGHT for my son every day * He is a fighter and more brave than he should have to be * I will educate my loved ones on this disease.
I realize this was long, but I had to do it. I maybe lost you after the third paragraph and I hope that our family means enough to you that someday you will finish reading this post because it's very important for you to understand what our family goes through and to educate yourself the best you can for Trey's sake.
I'll be posting about diabetes, because quite frankly, diabetes has become a 24/7 job. While it's a treatable disease, there is no cure, and never before did I really care or think much about it, but now that I'm living the nightmare and seeing my son get needles stuck in his body 12ish time a day ... I realize how ignorant I was. I will become an expert on this fucking disease real quick. It's my mission to keep my son as healthy as I can and allow him to continue to follow his dreams of playing hockey at a high level. I'll be the mom on the bench checking blood sugar levels and handing him a snack in the middle of the period to keep his sugar level up. I'll be THAT mom. The helicopter mom. The mom who constantly worries about her son's blood sugar level. Who will not sleep a wink the first time he stays overnight away from home. The mom who will constantly ask him if he ate, what he ate, if he took his shot, how he feels, etc. As if we didn't already have a close bond ... This has really made it closer yet.
*********************************************************************************
I ran across a blog a mother wrote about her T1D daughter who was diaganosed at age three. She nailed it man ... Everything I've thought and felt and have wanted to say - she said it. I don't want to copy her post, but I feel the need to share what I can relate to.
I hate the question "How's Trey doing?" While I know people mean well, I don't know how to answer it. Typically I say "Good", but I guess I don't know if that is the honest answer. While it seems like such a simple question, there isn't a simple answer. The first few times people asked I would shrug and say "I don't know I guess" and I got looks of horror or confusion from people, so now I just say "good" and that seems to pacify everyone.
If you don't live with diabetes 24/7, then you don't know. You can't know, and for me to try to explain it to you is about like giving a cat a bath. But I have to try. I have to try to give everyone I know as much information as I can and make it as simple as I can - even though there is NOTHING simple about T1D.
T1D is an autoimmune disease. It isn't caused by eating too much sugar, it's not because of my Gestational Diabetes while pregnant with him and there is no cure for it. Insulin is not a cure. (More on that later).
I need you to know ...
- there is no "good" or "bad" kind of diabetes
- you can't take your medicine and forget about it. It's not the flu that you deal with for 24 hours and then it's over. It's not a week long cold and then you're better.
- I think about diabetes 24/7. I honestly forgot to pick up my daughter from her Papa's house one day because my mind was so cloudy from lack of sleep, blood sugar numbers, checking the clock to see when the next blood sugar check was supposed to be, etc.
- diabetes is not something that is black and white. It's gray, so very gray. It truly doesn't make any sense as to why a meal today raises the blood sugar level or why tomorrow that very same meal drops the blood sugar number. Diabetes is changing, constantly.
- insulin shots are not a cure. To calculate insulin is not a+b=c. It's very complicated and in fact, can be deadly. Yes, we all die sometime from something, but I don't mean he will die from diabetes when he's 70, he can die from it TODAY if we don't take care of him the best we can.
- while we haven't ran into this yet, having an illness such as stomach flu or common cold will wreak havoc on blood sugar numbers. Trey can very easily shoot very high or drop very low in just mere hours and it can land him in the hospital or worse yet, kill him.
- Trey will have an insulin pump ... eventually. That was one of the fist questions everyone asked, and neither J or myself really had even gotten that far in our conversations with the specialists in SF. There is so much more to learn before a pump is discussed. What everyone NEEDS to know about the pump is that while it will avoid the insulin shots, it's still not a cure. You still have to tell the pump how much insulin to give which means you still have to figure our the proper ratios and all that jazz. Convenient in some aspects, yes ... But it doesn't allow mom to sleep any better at night or stop the 8 finger pokes a day checking blood sugar levels. And since it's a machine, it can quit anytime. We have to know how to give insulin manually before doctor will implant a pump.
- everything Trey does affects his sugar levels. The foods he eats, the exercise he gets, the stress he's under, the illness brewing inside his body, nerves, excitement, hormones.
- Trey can eat anything he wants. Yes, even birthday cake or suckers.
- sugar-free isn't always better.
- his blood sugar must be checked BEFORE he eats. Not after, not even after a few bites. BEFORE
- trying to be the perfect pancreas for him is impossible
- I don't want you to pity him or our family. I want you to FEEL for us and help find a cure with your empathy.
- having diabetes cost A LOT of money.
- I am exhausted, mentally. I am crabby. I feel as if I am going through the stages of grief.
- I too was once ignorant to how severe Type 1 Diabetes is. Educate yourself and educate others.
- this has been a life changing event. Nothing was once as easy as it was. Even a trip to the store must be planned around a blood sugar check or meal time.
- people are going to think I am very over protective and that's fine. Until YOUR child is diaganosed with a deadly disease, you can think whatever you want. When their life lies in your hands and your calculations and your medical knowledge ... Then judge me.
- PLEASE do not compare T1D to Type 2. It's not the same. Do your research. It infuriates me when people say it's the same.
- I said it myself to try to make myself feel better, but since I've found it to be annoying when someone says, "At least he got it young so he won't know life before it." Yes, because every 4 year old should have to go through what he's gone through. It's not 'good', it's sad.
- I'm doing everything I possibly can to the very best of my ability. I have given this disease my full attention. I've lost weight, lost sleep, lost my fricking mind because of this. I've cried enough tears to fill Amsden Lake. I've felt guilty that I can't take away this disease for him and that I didn't catch it even sooner than I did. I hate poking his fingers to draw blood. I hate giving his insulin shots to him. I hate having to tell him, "No, you can't eat that right now. You have to wait 30 minutes." I hate seeing his sad face. I hate that he has to live with this forever and that there is no medical reason why he has it. I hate that there is no cure for it. I hate it.
- I do know this: having diabetes makes you strong * things do get better * there will be a cure one day - I just hope my son is alive when that cure comes * it always hurts * he will do great things in his life despite his illness * I will never give up or give in - I will FIGHT for my son every day * He is a fighter and more brave than he should have to be * I will educate my loved ones on this disease.
I realize this was long, but I had to do it. I maybe lost you after the third paragraph and I hope that our family means enough to you that someday you will finish reading this post because it's very important for you to understand what our family goes through and to educate yourself the best you can for Trey's sake.
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