Today's post prompts were to write a News Style Post or write about a time you had to take the high road. Neither of those appealed to me today, so I decided to use one of the alternate prompts, which is to share my favorite blogs.
I have lots of favorites, but here I'll share my favorite Diabetes blogs. They are in no particular order. I also have a list of blogs on the sidebar of my blog, some of those are my favorites, I try to keep that list updated, feel free to click on some of them and read.
Kerri over at Six Until Me or SUM was the first Diabetes blogger I found, shortly after Kortnie was diagnosed. I was overwhelmed and scared, and ironically had watched the movie Steel Magnolias the day before Kortnie's diagnosis. Steel Magnolias is about a young woman with Type 1 Diabetes, set in the 80's, she ends up dieing from complications to pregnancy and diabetes. It is a heartbreaking story, and I was really freaked out, I asked about pregnancy and how normal of a life Kortnie would have while we were still in the hospital, the nurses said she could expect to have a healthy pregnancy and life if she took care of herself, they even mentioned that real life was not like the movie Steel Magnolias. I laughed and told them I had just watched that movie on Saturday, Kortnie was diagnosed on Sunday and I probably asked that question on Monday or Tuesday. Anyways, back to Kerri's blog, when I found it, we were probably a month of so into Kortnie's diagnosis and Kerri was blogging about her pregnancy. I found her to be amusing, but serious, and I loved the peek into a grown woman's life, a woman who had been living with Type 1 Diabetes since she was 6, and was now experiencing her first pregnancy. I still continue to read her blog often.
Wendy over at Candy Hearts is another of my favorites. She is a mom of 3 girls, her oldest daughter has Type 1 and Celiacs, Wendy also has Celiacs. She even lives in the same state as me. We have met each other in real life a few times, and our daughters were at Diabetes Camp together over the summer, in the same cabin. I can't exactly remember how I found her blog, maybe I clicked over from Kerri's blog. Wendy is passionate, she's a great writer, and she writes about situations that are similar to mine. I also like that she writes about Celiacs, that is something I am also interested in. Celiacs is an Auto-Immune disorder that shows up as a Gluten Allergy. My husbands Grandma has Celiacs, and I sort of assume that Kortnie or one of my other kids will end up with it eventually. It seems that once you have one Auto-Immune Disorder, more will follow eventually. She also is a big supporter of the Life For a Child Campaign which is an organization that delivers insulin to children in countries where it is not available. In some countries a diagnosis with Type 1 Diabetes is a death sentence because those children do not have access to insulin. One of my favorite posts on her blog was from her husband Mr. Rose, he took questions from the readers and answered them. He even answered one of my questions. I asked about how he handled taking care of the kids by himself and if he ever would be annoyed when/if Wendy called asking for a report. This was at a time when I think we were still fairly newly diagnosed and I was having a hard time leaving Kortnie with her dad-or anyone else for that matter. Now I am totally fine leaving her, for the record, Brian is an awesome father and very attentive to all of our kids and Diabetes, I do not have a problem leaving him in charge of the big D, he does things differently from me, but I have learned that that is OK!
Rayna over at Beta Buddies is another of my favorites, she doesn't write super often but when she does it is funny and real. I laugh and cry and sit here grinning at my computer. She has colorful language and mascara fringed eye balls. She is a hockey mom and a D-Mom and a mom who worries about how Diabetes affects the other Non-D kid. She is an on-the-go mom like me and she gets irritated with her husbands pancreating skills-just like me! Now in the paragraph above I mentioned that I have learned it's okay that Brian does thing differently from me, that is true, it's okay, but that doesn't mean that I don't roll my eyes at him behind his back or go stomping off when he does something that I don't like. Somehow, reading about Rayna's Day-In-The-Life puts my day in perspective. It's just nice to know that other women out there go through the same crap as me, and make the same mistakes and triumphs as me. It's nice to laugh at the craziness of our world.
Meri at Our Diabetic Life is a fantastic writer. She is the mother of 4 boys. FOUR! Not only is she mom of four boys, but 3 of them have Type 1 Diabetes. THREE.OF.THEM! Yikes. Not only does she parent and love these 4 boys, but she has had a pretty crappy year, maybe the most craptastic year that anyone could imagine. But, she continues to write, there is love in her writing, she somehow gives her reader comfort and peace, I am amazed at how she just keeps going and always has something good to say, she's also good for a good cry, and we all need that now and then. I always kind of feel refreshed after a good cry. I love being able to cry with these women in my computer, most of who I've never met in real life. Check out her posts Anatomy of a Low and Alice in Diabetesland, two of my most recent favorites of hers.
A few more of my favorites are
Dword Ramblings another AZ mom whose daughter was at camp with Kortnie.
My Diabetic Child, a mom who is funny and random and makes me laugh.
Death of a Pancreas Jo, who is witty and made that You Tube video I posted yesterday
Diabetes Sweeties A mom on the East Coast one of the first blogs I started reading
The Princess and The Pump A cute girl and a cute mom
Houston...We have a PROBLEM A fun mom who has 3 great kids, a little guy with T1, and a daughter with Chron's and another sweet girl, they lead a busy and interesting life, the little guy with Type 1 sure seems to keep her on her toes and keeps her laughing with the crazy antics he's in to.
Dimples and Diabetes a real life friend of mine, her husband has Type 1, her Brother in law has Type 1, her daughter has Type 1, and her nephew too. She has 5 daughters, they used to live in the same town as us and my Kortnie was friends with one of her daughters before little Libby got diagnosed. She hasn't blogged in a long time, but she's still one of my favorites. Love them!
All of these bloggers and many more have become my friends and I love reading about them and sharing some Same-Same with them. I am also friends with all of them on Facebook and I love that social media gives me a place to connect with these other moms, so we can cry on each others shoulders, vent, share ideas, and lift each other up.
Type 1 Diabetes Fact of the Day-
Approximately 80 people per day in the US are diagnosed with Type 1 Diabetes. I consider ourselves lucky to have Diabetes in this country where we have access to the medications and supplies we need to keep our daughter alive. A Type 1 Diagnosis in other countries can be a death sentence. Diabetes hits the poorest hardest. In Zambia, a child with type 1 diabetes can expect to live an average of 11 years. In Mali, the same child can expect to live only 30 months. And in Mozambique, the child is likely to die within a year.
Kortnie
Kortnie at the 2011 JDRF Walk to Cure Diabetes, Tempe Town Lake, Tempe, AZ
Showing posts with label DOC. Show all posts
Showing posts with label DOC. Show all posts
Tuesday, November 6, 2012
Tuesday, September 11, 2012
It's true what they say about Monday's
My poor Kortnie, I feel so bad for her sometimes. Ever since she was a little baby she's always been my sickest kid. Once she was diagnosed with T1D, she actually didn't get quite as sick anymore, we figured it was beacause we finally knew what was wrong with her and we were working hard to treat her and give her a healthy life. Well, we are coming up on 3 years since diagnosis and while we've dealt with a few colds and one or two stomach bugs, we've not had to deal with anything too awful.
Saturday morning she had a soccer game, Saturday evening we went to the fair. Blood sugars were good, we had a fun day, at the fair we ate some junk food, funnel cake, french fries, lemonade, and hot dogs. I bolused, the BG's stayed good. From 10:30pm Saturday night to 8am Sunday morning she was kind of high but 230-280. I figured it was residual from that dang funnel cake and lemonade. By 10am Sunday she was back at 112, we had breakfast and went to church at noon she was 81 and still had Insulin On Board (IOB), I gave her 3 smarties and sent her to her Sunday School class while I stayed in my class. We got home from church around 2:30 and she went to the bathroom, then came out and started telling her dad stomach hurt and she went to the bathroom during church and just now at home and there was blood in her pee. He called me upstairs and told me, she hadn't flushed the toilet so I went and looked. Not gonna lie, I freaked out. Jumped on the computer and started googling. I figured that she probably had a UTI (uterine tract infection), but there was also stuff about Kidney Stones and Kidney Disease and how people with Diabetes have Kidney problems. So I started asking her questions and figured that yeah, it probably was a UTI. Next I went into some of the D-Mom and PWD groups on Facebook and posted a question about it. I got lots of advice and encouragement, here. I am so grateful for the DOC (Diabetes Online Community)! I called her Endocrinologist and they said it sounded like a UTI as well, and that I could give her tylenol and push fluids and keep her at home and take her to Urgent Care in the morning or ER that night if she was really in pain. She did go to the bathroom several times that evening, we monitored ketones and they stayed around the trace-moderate range, her BG's were pretty good too so I wan't too worried, just feeling bad for her that she was in pain. I have never had a UTI myself, but some of my friends told me that they pretty much suck and are painful. A friend of mine and a fellow Diabetic brought her an AZO pill that is supposed to help with the pain and also turns the urine kind of bright orange or yellow. That little pill seemed to help her and get her through the night.
Monday morning I was supposed to go to the hosptial and give a talk to a group of Nurse's doing a training session and all the different types of diabetes. I've done this training class before. I was supposed to be there at 9am, Kortnie had wanted to go with me, but I told her she had to go to school. Well, plans changed, I was at the Urgent Care with her by 8am, we were still there at 9am and I called the hospital and told them that I was at Urgent Care and was going to be late, they of course were okay with that, my talk is about being the parent of a T1D, and well, this little trip to the Urgent Care and messing up my plans for the day fits right in with that doesn't it?
I told the docs at Urgent Care that I prefered the Walmart pharmacy, but they must have written down Walgreen's instead, because they sent our prescription to Walgreens. Oh well, I can run over there and pick it up, not a huge deal, even though I already had to go to Walmart to pick up test strips and a few other things.
After we were done at Urgent Care we headed over to the hospital, I gave my talk, the Nurse's asked me some questions. One of the questions they asked me was "Do you ever get a break?" I smiled and told them not really. One of the nurses asked Kortnie "How do you feel about having diabetes?", she thought about it for a minute and then said "it sucks!" but she was smiling when she said it and they all laughed and there was of a chorus, of empathy and "I bet's".
Next we went to Walmart, stopped by the Pharmacy and they were still out of test strips, I had called in the prescription the previous Monday, it had been exactly a week and they were still out. What's up with that, the pharmacy tech decided to just pull them off the OTC shelf for me. I'm not sure what the dang difference is between the prescription and OTC strips is. Well, actually there is no difference in the strips, I'm sure the difference is all in the paperwork and behind the scenes stuff. They told me to go shop while they got it all ready for me. So I went and shopped, got the stuff on my list, headed back to the pharmacy to pick up the strips. We are standing in line and Kork says she feels low, she checks her BG and she's 43! Yikes. Good thing I had juice boxes in my cart! I popped open a box of Capri Sun's and she sucked one down and sat on the bench by the Pharm counter while I waited in line. Had to laugh, here she is low, while waiting in line to pick up a new batch of test strips. I mean it's one of those moments where you either laugh or cry. I got the strips and she said she was feeling okay so we went over and got in line to pay for our other stuff. Hopped in the car and went across the street to Walgreens for her UTI meds. She was feeling better and her BG was up to 112, so we stopped at Subway for lunch. I gave her the first dose of antibiotics and she said it was yucky.
Then we headed home, she was so tired, I could see it in her face, we got back to town around 12:30, I was going to let her come home and have a nap, but she wanted to go to school. So, I dropped her off at school. Let her teacher know about the UTI and she would need to go to the bathroom. She has access to the bathroom already according to her IEP, but it also says in the IEP that if she's going to the bathroom a lot, she's probably high and needs to check, so I just figured I'd clue her in on the UTI. Her awesome teacher told Kortnie, "oh those are no fun, I've had them before, I'm sorry you don't feel good, don't worry, if you have to go to the bathroom, just get up and go, even if I'm busy you just go, you are definitly not supposed to try to hold it in okay, I won't collect a stick from you". Awesome! (the kids get popsicle sticks at the beginning of the week and then as rewards for various things throughout the week, usually if someone has to use the bathroom she makes them "pay" a stick to go, she doesn't make Kortnie "pay" with a stick though)
I picked her up at 2:30 and she told me she had fun at school and that she only had to go to the bathroom twice, and that she was feeling better. She went to Soccer practice yesterday afternoon too, even though I wanted her to stay home and rest, but nope, she wanted to go to Soccer and play and have fun with her friends. This girl, she doesn't let anything keep her down for too long. She's my Hero. I look at her and she looks so tired, I know that Diabetes wears her out sometimes, and I know this UTI has her beatdown and probably the combination of Diabetes and UTI is even worse, but she just keeps on keeping on. I don't even know if she knows what it feels like to feel good, I think she probably feels crappy so much of the time, that feeling crappy is just her version of normal. I wish I could take all of it away from her, it makes me sad, but I don't want her to see how sad it makes me, because even though she says having diabetes "sucks" she seems okay with it most of the time. The fact of the matter is that even though I want to take it from her, I can't, so I have to let her be okay with it and not make her think it's such an awful, terrible, sad thing...even though it is! When she wants to rant and rave and be mad, I'll let her, by golly, but for now, she's okay with it all, so I guess I will be too.
Saturday morning she had a soccer game, Saturday evening we went to the fair. Blood sugars were good, we had a fun day, at the fair we ate some junk food, funnel cake, french fries, lemonade, and hot dogs. I bolused, the BG's stayed good. From 10:30pm Saturday night to 8am Sunday morning she was kind of high but 230-280. I figured it was residual from that dang funnel cake and lemonade. By 10am Sunday she was back at 112, we had breakfast and went to church at noon she was 81 and still had Insulin On Board (IOB), I gave her 3 smarties and sent her to her Sunday School class while I stayed in my class. We got home from church around 2:30 and she went to the bathroom, then came out and started telling her dad stomach hurt and she went to the bathroom during church and just now at home and there was blood in her pee. He called me upstairs and told me, she hadn't flushed the toilet so I went and looked. Not gonna lie, I freaked out. Jumped on the computer and started googling. I figured that she probably had a UTI (uterine tract infection), but there was also stuff about Kidney Stones and Kidney Disease and how people with Diabetes have Kidney problems. So I started asking her questions and figured that yeah, it probably was a UTI. Next I went into some of the D-Mom and PWD groups on Facebook and posted a question about it. I got lots of advice and encouragement, here. I am so grateful for the DOC (Diabetes Online Community)! I called her Endocrinologist and they said it sounded like a UTI as well, and that I could give her tylenol and push fluids and keep her at home and take her to Urgent Care in the morning or ER that night if she was really in pain. She did go to the bathroom several times that evening, we monitored ketones and they stayed around the trace-moderate range, her BG's were pretty good too so I wan't too worried, just feeling bad for her that she was in pain. I have never had a UTI myself, but some of my friends told me that they pretty much suck and are painful. A friend of mine and a fellow Diabetic brought her an AZO pill that is supposed to help with the pain and also turns the urine kind of bright orange or yellow. That little pill seemed to help her and get her through the night.
Monday morning I was supposed to go to the hosptial and give a talk to a group of Nurse's doing a training session and all the different types of diabetes. I've done this training class before. I was supposed to be there at 9am, Kortnie had wanted to go with me, but I told her she had to go to school. Well, plans changed, I was at the Urgent Care with her by 8am, we were still there at 9am and I called the hospital and told them that I was at Urgent Care and was going to be late, they of course were okay with that, my talk is about being the parent of a T1D, and well, this little trip to the Urgent Care and messing up my plans for the day fits right in with that doesn't it?
I told the docs at Urgent Care that I prefered the Walmart pharmacy, but they must have written down Walgreen's instead, because they sent our prescription to Walgreens. Oh well, I can run over there and pick it up, not a huge deal, even though I already had to go to Walmart to pick up test strips and a few other things.
After we were done at Urgent Care we headed over to the hospital, I gave my talk, the Nurse's asked me some questions. One of the questions they asked me was "Do you ever get a break?" I smiled and told them not really. One of the nurses asked Kortnie "How do you feel about having diabetes?", she thought about it for a minute and then said "it sucks!" but she was smiling when she said it and they all laughed and there was of a chorus, of empathy and "I bet's".
Next we went to Walmart, stopped by the Pharmacy and they were still out of test strips, I had called in the prescription the previous Monday, it had been exactly a week and they were still out. What's up with that, the pharmacy tech decided to just pull them off the OTC shelf for me. I'm not sure what the dang difference is between the prescription and OTC strips is. Well, actually there is no difference in the strips, I'm sure the difference is all in the paperwork and behind the scenes stuff. They told me to go shop while they got it all ready for me. So I went and shopped, got the stuff on my list, headed back to the pharmacy to pick up the strips. We are standing in line and Kork says she feels low, she checks her BG and she's 43! Yikes. Good thing I had juice boxes in my cart! I popped open a box of Capri Sun's and she sucked one down and sat on the bench by the Pharm counter while I waited in line. Had to laugh, here she is low, while waiting in line to pick up a new batch of test strips. I mean it's one of those moments where you either laugh or cry. I got the strips and she said she was feeling okay so we went over and got in line to pay for our other stuff. Hopped in the car and went across the street to Walgreens for her UTI meds. She was feeling better and her BG was up to 112, so we stopped at Subway for lunch. I gave her the first dose of antibiotics and she said it was yucky.
Then we headed home, she was so tired, I could see it in her face, we got back to town around 12:30, I was going to let her come home and have a nap, but she wanted to go to school. So, I dropped her off at school. Let her teacher know about the UTI and she would need to go to the bathroom. She has access to the bathroom already according to her IEP, but it also says in the IEP that if she's going to the bathroom a lot, she's probably high and needs to check, so I just figured I'd clue her in on the UTI. Her awesome teacher told Kortnie, "oh those are no fun, I've had them before, I'm sorry you don't feel good, don't worry, if you have to go to the bathroom, just get up and go, even if I'm busy you just go, you are definitly not supposed to try to hold it in okay, I won't collect a stick from you". Awesome! (the kids get popsicle sticks at the beginning of the week and then as rewards for various things throughout the week, usually if someone has to use the bathroom she makes them "pay" a stick to go, she doesn't make Kortnie "pay" with a stick though)
I picked her up at 2:30 and she told me she had fun at school and that she only had to go to the bathroom twice, and that she was feeling better. She went to Soccer practice yesterday afternoon too, even though I wanted her to stay home and rest, but nope, she wanted to go to Soccer and play and have fun with her friends. This girl, she doesn't let anything keep her down for too long. She's my Hero. I look at her and she looks so tired, I know that Diabetes wears her out sometimes, and I know this UTI has her beatdown and probably the combination of Diabetes and UTI is even worse, but she just keeps on keeping on. I don't even know if she knows what it feels like to feel good, I think she probably feels crappy so much of the time, that feeling crappy is just her version of normal. I wish I could take all of it away from her, it makes me sad, but I don't want her to see how sad it makes me, because even though she says having diabetes "sucks" she seems okay with it most of the time. The fact of the matter is that even though I want to take it from her, I can't, so I have to let her be okay with it and not make her think it's such an awful, terrible, sad thing...even though it is! When she wants to rant and rave and be mad, I'll let her, by golly, but for now, she's okay with it all, so I guess I will be too.
Saturday, September 17, 2011
Invisible Illness Week, Our 30
It's invisible illness week, I haven't updated this blog or our personal family blog in quite awhile. I keep meaning to, but then something else comes up. I'm still reading all the other D-Blogs out there though! The past day or two people have been posting their answers to 30 questions in honor of supporting "Invisible Illness Week". Kortnie's Type 1 Diabetes is very much an invisible illness. That's a blessing and sometimes a curse as well. Read on to see what I have to say about it.
1. The Illness I live with is: Type 1 Diabetes, I don't live with it the way Kortnie LIVES with it, but her illness is a family affair. I believe it always will be.
2. She was diagnosed with it: November 7th, 2009, we're fast approaching the 2 year mark, I'm not sure what to feel about that.
3. But she had symptoms since: The best I can figure it when I look back is that she started showing symptoms about 7 months prior to diagnosis. We had gone on a family vacation in March of 2009 to a family wedding, on the way home we had a long 2 day drive, I swear on that first day, she cried for us to stop and let her use the bathroom every 30 minutes and she was so thirsty, I didn't want her to drink any more water because of all the bathroom stops, but she was crying and so thirsty and so tired too. I figured she had a bladder infection from all the swimming or something, I made her drink Cranberry juice and eat some yogurt, when I look back I think she was probably having a bad pre-Diabetes day, something about that trip was the turning point for her slowly dying pancreas.
4. The biggest adjustment I've had to make is: It's hard to name just one thing, I'd like to say everything, but that really isn't an answer. If I have to narrow it down, I'm gonna say, the biggest thing we changed was that I quit my job, Kortnie was in 1/2 day Kindergarten when she was diagnosed, she was sad and scared, she didn't want anyone to give her shots but me, not even her dad. There was no way I was going to be able to send her to a babysitter and have the babysitter literally hold my little girl's life in her hands.
5. Most people assume: That we know what we are doing, they don't realize the thought that I put into everything Kortnie does, what time she eats, what she's eating, what she's going to be doing, is she growing, is she getting sick, will it be cold, will it be hot, is she going to be excited, it goes on and on, Everything she does or doesn't do will ultimatly affect her Blood Sugar somehow.
6. The hardest part about morning is: Getting Kortnie up early enough for her to check her BG, have breakfast and re-check again before leaving for school. Making sure her lunch is packed, her carbs in the lunch are written down properly for the school nurse and making sure she has enough battery life in her gadgets, insulin in her pump and test strips for her meter.
7. My favorite medical TV show is: Um, we don't have TV, but we do have Netflix, I recently watched all of the Grey's Anatomy episodes, I liked them, I used to love ER, but it's been off the air for awhile now.
8. A gadget I couldn't live without is: Kortnie couldn't live without her meter or insulin pump, I suppose she could live without the pump if she was on shots, but her meter, yep she needs that. Me, I couldn't live with out the alarm clock on my cell phone, I'd never be able to sleep if I was afraid I wouldn't remember to get up for a middle of the night check.
9. The hardest part about nights is: Worrying and not sleeping. I check Kortnie's BG at 8pm when she goes to bed, 10:30pm when I go to bed, 2:30am and then again at 5:30 or 6 when I wake up. Some nights it's hard to roll out of bed at 2:30am, especially if I am extra tired or feeling sick myself, my husband pretty much never does the 2:30am check, he sleeps right through the alarm. It makes me a little angry and bitter sometimes, but even if he did get up and do the check for me, I'd still wake up and want to know what her number was, what her IOB (Insulin On Board, the insulin she still has in her system) was, how much insulin did he give or not give. Sometimes it's hard for me to stay up untill 10:30 for that check, my husband does help me with that one quite a bit though, and for that I am grateful.
10. Each day I take _ pills and _ vitamins. Kortnie takes a vitamin C and a multi-vitamin every morning at breakfast
11. Regarding alternative treatments: There are no alternative treatments for Type 1 Diabetes Kortnie's pancreas does not make insulin, you need insulin to live, so she takes insulin. I suppose there are 2 treatments for Type 1, MDI (Multiple Daiy Injections) or Insulin Pumping. They both involve insulin though, Kortnie is an Insulin Pumper, she has a tube inserted into her abdomen every 3 days and the tube is hooked to an insulin pump she recieves insulin every 3 minutes 24/7/365. Before becoming a pumper, she was on MDI and she took 5-7 shots of insulin every day.
People are always telling me about new things that can reduce her insulin dependancy or even cure her Type 1. For the most part these people I know are just trying to be helpful they are under educated in Type 1. I still look into these "helps" even though I know they won't work. Most of the time I try to educate them and tell them why it won't work for us, sometimes I don't. Shame on me, but sometimes I'm just too tired, my brain hurts.
12. If I had to choose between invisible illness or visible I would choose: This is a tough one, how about if I choose NO ILLNESS! I'm glad that Kortnie can do so many things, everything really, and that she doesn't have to look "weird" or whatever. After Kortnie was first diagnosed I took a 3 month LOA from my job at Walmart. I tried to go back to work Part-Time, my first day back they put me at cashier training, I went and covered a lunch break for a door greeter though, quite a few of my friends from work walked up there to talk to me. I was having a bad day and feeling sorry for myself and feeling sorry for my Kortnie, when in walked a mom and her child. Her child was older, maybe pre-teen or teen, and in a wheelchair, severly handicapped, and I thought to myself, "I'm glad that's not me, my situation could be alot worse" I used to think the Lord sent that lady and her kid to my door to help me somehow not feel so sorry for myself, and maybe He did, but I also wonder sometimes, if that lady would look at my situation and think that I am worse off than her. I guess I'm glad that Kortnie's illness is invisible, that way we aren't stared at and judged as much. It's all about perspective....
13. Regarding work and career: I always wanted to be a stay at home wife and mother, I didn't really love my job at Walmart and I wasn't that sad about having to leave it, my family could use the money if I went to work but what I was making there only left me about $50 a month after I paid for gas and babysitting. I might go back to work again after my youngest starts all day school (2 years from now), but we live in rural AZ and I'd want to find a job in Snowflake where we live rather then 20 miles away in Show Low. Even though I expect Kortnie will have more independance by then, she'll be going through puberty soon and I hear that is HELL on Type 1 girls, probably boys too, I'll still feel like I need to be within a couple minutes of her if she needs me.
14. People would be suprised to know That I never feel in control and that most of the time I still don't know what I'm doing. I'm scared all of the time too.
15. The hardest thing to accept about my new reality has been: That we can't really be carefree or spontaneous anymore. We can't just jump in the car and go on an adventure, find a new place to hike or go fishing. We have to think, plan and pack all the stuff that Kortnie needs. Even something as simple as a family bike ride takes thought.
16. The one thing I never thought I could do because of my illness but did do was: Kortnie can do anything she wants to do, except go without her insulin. She tries to avoid shots and site changes and finger pokes though. I'm glad that she can still do anything, but I'm sad that she has to think about it so much, it's like part of her childhood is gone.
17. The commercials about my illness: UGH, there aren't many about Type 1, the Type 2 commercials can be scary though especially for a 5-7 year old, I remember her asking me once if her leg was going to get amputated, what do you tell a little kid? I just told her "No, probably not"
18. Something I really miss doing since I was diagnosed: Telling her to just go find a snack or sleeping all night long.
19. It was really hard to have to give up: Sleep, you know how when you have a new baby and you get up in the middle of the night to feed it and cuddle it and you think it's not that bad most nights because eventually your baby will sleep through the night? Well, just the other week I asked my husband if he thought that when Kortnie was a teenager would I still be doing the middle of the night checks and he said yep, and when she's grown up you'll probably call her at 2am and see what her BG is. Yeah, I think it's going to be another 10-12 years before I can sleep all night long.
20. A new hobby I've developed since diagnosis is: Um, I already had a blog, but I did start this DOC blog. I don't do it very often though, I have been more crafty and thrifty since her diagnosis though, probably because I'm not working.
21. If I could have one day of feeling normal again I would: First I would sleep 8 hours in a row at night, then I would take the kids and go somewhere fun, the lake, Phoenix, I don't know somewhere, and we'd have fun all day and I wouldn't have to think about Diabetes or how that cotton candy is going to make her BG skyrocket or how many juice boxes to pack, and I wouldn't have to stop and tell her to check her Blood Sugar. She hates that when she's having so much fun running around and I have to tell her to stop and poke her finger and eat or poke her finger and bolus.
22. My illness has taught me: Kortnie's illness has taught me that I am stronger than I thought and that all people are stronger than they think and I think it has helped me in my compassion skills as wel.
23. Want to know a secret? One thing that people say that gets under my skin is: "I don't know how you do it!" or "I could never do what you do!" Well, guess what, I don't know how we do it either, but we do and you could too. This is my kid, I will always do whatever it takes to keep her alive, I'll always do whatever it takes to keep all of my kids alive, I knew this before Kortnie was diagnosed of course, it's in the core of any parent.
24. But I love when people: Tell Kortnie how brave she is or how proud of her they are, I love when people ask me questions and they are willing to learn. (sometimes I might come off short but I still love when you want to know, it's just that sometimes D is such a broad thing that I'm still having a hard time coming up with answers that aren't too overwhelming for the non-D folks out there) I love that when Kortnie's 2nd grade teacher read a book about Type 1 to the kids this year and then let Kortnie show off her pump and test her BG that all the boys thought she was SO COOL!
25. My favortie motto or Scripture is: As the father hath loved me, so I have loved you: continue ye in my love John 15:9
26. When someone is diagnosed I'd like to tell them. "I know it's alot and you are scared to take your baby home and do this by yourself, but you can do it and there are lots of people out there that will help you, don't be afraid to ask for help" then I would hand them a list of DOC websites and blogs, I so wish I would have known about the DOC before I went home not 6 months later
27. Something that has suprised me about living with an illness is: Even though our lives have changed A LOT, in someways our lives have changed for the better. I am able to stay at home with our kids, our kids have more compassion, we eat a bit healthier, Kortnie is a whiz at math I think from all the carb counting. I thought our lives were doomed and "life as we knew it was over" and I guess in a lot of ways our old way of life is over, but this new way of life, it's not doomed like I thought it was going to be.
28. The nicest thing someone did for me when I wasn't feeling well was: When we brought Kortnie home from the hospital there was a huge banner hanging on our front window that said "Welcome Home Kortnie!"" I still don't know who put it up, but it was a nice thing to see. Our hospital was 4 hours away from our home so nobody could really feasibly come visit her at the hospital, but she did have vistors after she got home and that was good to see too that everyone who loved her came to see her and didn't really treat her any differently.
29. I'm involved with Invisible Illness week because: I liked reading everyone else's responses and I thought this would be a good first blog post back after I haven't blogged all summer long.
30. The fact that you read this list makes me feel: Blessed to have you in our lives, whether you are our family, our friend, part of the DOC family, or just a random reader.
1. The Illness I live with is: Type 1 Diabetes, I don't live with it the way Kortnie LIVES with it, but her illness is a family affair. I believe it always will be.
2. She was diagnosed with it: November 7th, 2009, we're fast approaching the 2 year mark, I'm not sure what to feel about that.
3. But she had symptoms since: The best I can figure it when I look back is that she started showing symptoms about 7 months prior to diagnosis. We had gone on a family vacation in March of 2009 to a family wedding, on the way home we had a long 2 day drive, I swear on that first day, she cried for us to stop and let her use the bathroom every 30 minutes and she was so thirsty, I didn't want her to drink any more water because of all the bathroom stops, but she was crying and so thirsty and so tired too. I figured she had a bladder infection from all the swimming or something, I made her drink Cranberry juice and eat some yogurt, when I look back I think she was probably having a bad pre-Diabetes day, something about that trip was the turning point for her slowly dying pancreas.
4. The biggest adjustment I've had to make is: It's hard to name just one thing, I'd like to say everything, but that really isn't an answer. If I have to narrow it down, I'm gonna say, the biggest thing we changed was that I quit my job, Kortnie was in 1/2 day Kindergarten when she was diagnosed, she was sad and scared, she didn't want anyone to give her shots but me, not even her dad. There was no way I was going to be able to send her to a babysitter and have the babysitter literally hold my little girl's life in her hands.
5. Most people assume: That we know what we are doing, they don't realize the thought that I put into everything Kortnie does, what time she eats, what she's eating, what she's going to be doing, is she growing, is she getting sick, will it be cold, will it be hot, is she going to be excited, it goes on and on, Everything she does or doesn't do will ultimatly affect her Blood Sugar somehow.
6. The hardest part about morning is: Getting Kortnie up early enough for her to check her BG, have breakfast and re-check again before leaving for school. Making sure her lunch is packed, her carbs in the lunch are written down properly for the school nurse and making sure she has enough battery life in her gadgets, insulin in her pump and test strips for her meter.
7. My favorite medical TV show is: Um, we don't have TV, but we do have Netflix, I recently watched all of the Grey's Anatomy episodes, I liked them, I used to love ER, but it's been off the air for awhile now.
8. A gadget I couldn't live without is: Kortnie couldn't live without her meter or insulin pump, I suppose she could live without the pump if she was on shots, but her meter, yep she needs that. Me, I couldn't live with out the alarm clock on my cell phone, I'd never be able to sleep if I was afraid I wouldn't remember to get up for a middle of the night check.
9. The hardest part about nights is: Worrying and not sleeping. I check Kortnie's BG at 8pm when she goes to bed, 10:30pm when I go to bed, 2:30am and then again at 5:30 or 6 when I wake up. Some nights it's hard to roll out of bed at 2:30am, especially if I am extra tired or feeling sick myself, my husband pretty much never does the 2:30am check, he sleeps right through the alarm. It makes me a little angry and bitter sometimes, but even if he did get up and do the check for me, I'd still wake up and want to know what her number was, what her IOB (Insulin On Board, the insulin she still has in her system) was, how much insulin did he give or not give. Sometimes it's hard for me to stay up untill 10:30 for that check, my husband does help me with that one quite a bit though, and for that I am grateful.
10. Each day I take _ pills and _ vitamins. Kortnie takes a vitamin C and a multi-vitamin every morning at breakfast
11. Regarding alternative treatments: There are no alternative treatments for Type 1 Diabetes Kortnie's pancreas does not make insulin, you need insulin to live, so she takes insulin. I suppose there are 2 treatments for Type 1, MDI (Multiple Daiy Injections) or Insulin Pumping. They both involve insulin though, Kortnie is an Insulin Pumper, she has a tube inserted into her abdomen every 3 days and the tube is hooked to an insulin pump she recieves insulin every 3 minutes 24/7/365. Before becoming a pumper, she was on MDI and she took 5-7 shots of insulin every day.
People are always telling me about new things that can reduce her insulin dependancy or even cure her Type 1. For the most part these people I know are just trying to be helpful they are under educated in Type 1. I still look into these "helps" even though I know they won't work. Most of the time I try to educate them and tell them why it won't work for us, sometimes I don't. Shame on me, but sometimes I'm just too tired, my brain hurts.
12. If I had to choose between invisible illness or visible I would choose: This is a tough one, how about if I choose NO ILLNESS! I'm glad that Kortnie can do so many things, everything really, and that she doesn't have to look "weird" or whatever. After Kortnie was first diagnosed I took a 3 month LOA from my job at Walmart. I tried to go back to work Part-Time, my first day back they put me at cashier training, I went and covered a lunch break for a door greeter though, quite a few of my friends from work walked up there to talk to me. I was having a bad day and feeling sorry for myself and feeling sorry for my Kortnie, when in walked a mom and her child. Her child was older, maybe pre-teen or teen, and in a wheelchair, severly handicapped, and I thought to myself, "I'm glad that's not me, my situation could be alot worse" I used to think the Lord sent that lady and her kid to my door to help me somehow not feel so sorry for myself, and maybe He did, but I also wonder sometimes, if that lady would look at my situation and think that I am worse off than her. I guess I'm glad that Kortnie's illness is invisible, that way we aren't stared at and judged as much. It's all about perspective....
13. Regarding work and career: I always wanted to be a stay at home wife and mother, I didn't really love my job at Walmart and I wasn't that sad about having to leave it, my family could use the money if I went to work but what I was making there only left me about $50 a month after I paid for gas and babysitting. I might go back to work again after my youngest starts all day school (2 years from now), but we live in rural AZ and I'd want to find a job in Snowflake where we live rather then 20 miles away in Show Low. Even though I expect Kortnie will have more independance by then, she'll be going through puberty soon and I hear that is HELL on Type 1 girls, probably boys too, I'll still feel like I need to be within a couple minutes of her if she needs me.
14. People would be suprised to know That I never feel in control and that most of the time I still don't know what I'm doing. I'm scared all of the time too.
15. The hardest thing to accept about my new reality has been: That we can't really be carefree or spontaneous anymore. We can't just jump in the car and go on an adventure, find a new place to hike or go fishing. We have to think, plan and pack all the stuff that Kortnie needs. Even something as simple as a family bike ride takes thought.
16. The one thing I never thought I could do because of my illness but did do was: Kortnie can do anything she wants to do, except go without her insulin. She tries to avoid shots and site changes and finger pokes though. I'm glad that she can still do anything, but I'm sad that she has to think about it so much, it's like part of her childhood is gone.
17. The commercials about my illness: UGH, there aren't many about Type 1, the Type 2 commercials can be scary though especially for a 5-7 year old, I remember her asking me once if her leg was going to get amputated, what do you tell a little kid? I just told her "No, probably not"
18. Something I really miss doing since I was diagnosed: Telling her to just go find a snack or sleeping all night long.
19. It was really hard to have to give up: Sleep, you know how when you have a new baby and you get up in the middle of the night to feed it and cuddle it and you think it's not that bad most nights because eventually your baby will sleep through the night? Well, just the other week I asked my husband if he thought that when Kortnie was a teenager would I still be doing the middle of the night checks and he said yep, and when she's grown up you'll probably call her at 2am and see what her BG is. Yeah, I think it's going to be another 10-12 years before I can sleep all night long.
20. A new hobby I've developed since diagnosis is: Um, I already had a blog, but I did start this DOC blog. I don't do it very often though, I have been more crafty and thrifty since her diagnosis though, probably because I'm not working.
21. If I could have one day of feeling normal again I would: First I would sleep 8 hours in a row at night, then I would take the kids and go somewhere fun, the lake, Phoenix, I don't know somewhere, and we'd have fun all day and I wouldn't have to think about Diabetes or how that cotton candy is going to make her BG skyrocket or how many juice boxes to pack, and I wouldn't have to stop and tell her to check her Blood Sugar. She hates that when she's having so much fun running around and I have to tell her to stop and poke her finger and eat or poke her finger and bolus.
22. My illness has taught me: Kortnie's illness has taught me that I am stronger than I thought and that all people are stronger than they think and I think it has helped me in my compassion skills as wel.
23. Want to know a secret? One thing that people say that gets under my skin is: "I don't know how you do it!" or "I could never do what you do!" Well, guess what, I don't know how we do it either, but we do and you could too. This is my kid, I will always do whatever it takes to keep her alive, I'll always do whatever it takes to keep all of my kids alive, I knew this before Kortnie was diagnosed of course, it's in the core of any parent.
24. But I love when people: Tell Kortnie how brave she is or how proud of her they are, I love when people ask me questions and they are willing to learn. (sometimes I might come off short but I still love when you want to know, it's just that sometimes D is such a broad thing that I'm still having a hard time coming up with answers that aren't too overwhelming for the non-D folks out there) I love that when Kortnie's 2nd grade teacher read a book about Type 1 to the kids this year and then let Kortnie show off her pump and test her BG that all the boys thought she was SO COOL!
25. My favortie motto or Scripture is: As the father hath loved me, so I have loved you: continue ye in my love John 15:9
26. When someone is diagnosed I'd like to tell them. "I know it's alot and you are scared to take your baby home and do this by yourself, but you can do it and there are lots of people out there that will help you, don't be afraid to ask for help" then I would hand them a list of DOC websites and blogs, I so wish I would have known about the DOC before I went home not 6 months later
27. Something that has suprised me about living with an illness is: Even though our lives have changed A LOT, in someways our lives have changed for the better. I am able to stay at home with our kids, our kids have more compassion, we eat a bit healthier, Kortnie is a whiz at math I think from all the carb counting. I thought our lives were doomed and "life as we knew it was over" and I guess in a lot of ways our old way of life is over, but this new way of life, it's not doomed like I thought it was going to be.
28. The nicest thing someone did for me when I wasn't feeling well was: When we brought Kortnie home from the hospital there was a huge banner hanging on our front window that said "Welcome Home Kortnie!"" I still don't know who put it up, but it was a nice thing to see. Our hospital was 4 hours away from our home so nobody could really feasibly come visit her at the hospital, but she did have vistors after she got home and that was good to see too that everyone who loved her came to see her and didn't really treat her any differently.
29. I'm involved with Invisible Illness week because: I liked reading everyone else's responses and I thought this would be a good first blog post back after I haven't blogged all summer long.
30. The fact that you read this list makes me feel: Blessed to have you in our lives, whether you are our family, our friend, part of the DOC family, or just a random reader.
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