Friends & Family - Recent Threads

Life with a T1D Toddler..... Any advice welcome

Jennifer Connolly — Sat, 23 Mar 2013 03:06:21 GMT

Hello! I am the mom of Lainey who was diagnosed 12/29/11 at the age of 19 months. We (mom, dad, sister 11 years old and sister 8 years old) have spent the past 14 months learning to cope with our new life. We've made friends with a few T1D families as well as connected with our local JDRF branch. Here are a few questions for the forum:

Do any other moms work full time? I currently work full time and took a slight cut in pay to switch to a more flexible position. Seems most of the moms I meet work pt or stay home.
How do other parents deal with the round the clock checks? Every night we follow the same routine - test, shots (Lantus and Humalog if needed) & snack between 8/9pm, stay up till 11pm/midnight to check (then correct or wake up to give snack), nap for 2-3 hours, get up and test at 2/3am, name for 2-3 hours then get up at 5:30am. Trying to function throughout the day is tough when you feel like your sleep deprived brain is mush! I am so scared I will mix up meds or make wrong calculations all due to sleep deprivation!!
Does anyone else feel like they are loosing friends in their life? I am finding friends and family scared to death to be left alone with a diabetic toddler.
A 2 year old is bad enough - but a diabetic toddler has been a nightmare. We have 2 older girls and we find dealing with this one has left us totally spent and exhausted.
Has anyone had issues with their child being totally asymptomatic? Our Lainey can be happily sitting in group or playing quietly and when checked she is 450! The times she seems to be most cranky is when she is near her target of 150!
Is anyone else frustrated that most programs for T1D kids are for ages 6+? The toddler population is totally ignored. Great - I get to wait 4 MORE YEARS before I can get weekend respite care or let her go to a camp of be an Ambassador???
Anyone else stuck with medical daycare? Delaware law prohibits our child from attending any sort of care that does not include a RN or LPN etc.... So we have to go to a medical daycare. Why does my child who needs to be checked 2-3 times per day have to be forced into a facility where there are kids who are on respirators or are severely autistic or have serious development disabilities? How will she be prepared for preschool when most of her peers cannot even walk or breathe unassisted (though it makes me extremely appreciative of what these other parents have to deal with each and every day)?

Sorry but after a year I was hoping life would get easier! Ooh - last one - does anyone else hear my favorite phrase when you call your Endo to express concern that your child's average is close to 300, "Well, she is a Toddler and the little ones are tough to treat"!!???

Thanks for listening and any advice is appreciated. I am just beyond exhausted and tired of just trying to make it through day by day. I didn't mention the hubby is a police officer who works rotating shifts and daughter #2 is a severely Dyslexic (like we needed another challenge in our lives).

Thanks!

Jen

How to transfer responsibility to adult son

momtot1d — Thu, 20 Dec 2012 04:53:21 GMT

I am new to this group and hoping to find some support in parenting our type I adult son. He is almost 24 and other than test and take insulin and of course count carbs, he does not take on the responsibility for his care; financially or responsibility-wise. I am not belittling the work in doing what he does, but he has to become independent.

He is a personal trainer and his care for himself overall is great.( He also has celiac and is very good about eating a gluten free diet.) Tonight he just told me that he is out of lantus (he doesn't want to be on a pump), has four test strips left, and out of pen needles. His lack of responsibility just became a big financial crisis to me.

He has no health insurance because our Cobra dropped us (another story) and his profession doesn't provide health insurance. So everything is out of pocket. He gets free insulins through the prescription assistance programs, but they make you jump through some hoops to keep the lantus coming. I normally have ordered pen needles through an online company at a huge discount, but he needs them now. I did just give him his Christmas money from his grandma to go buy his own pen needles. Felt guilty, but...

Anyway, I am so conflicted. He needs to be responsible for himself to truly grow up, but I am always worried he'll refuse the push to take his care as his own and do something terrible.

Is there anyone out there who has successfully done this? Were you worried about how the adult child would respond? Please share your story.

Julie

I want to be normal again

Melissa — Sat, 15 Dec 2012 07:28:02 GMT

I use to have fun at parties and now I am lame because I can't relax. I am having to check my glucose constantly and I am all over the place. I hate it. It is so annoying to here people question why you are drinking water. It's not like I am wanting to drink the water, I have to.

Also I am newly single after over 4 years and I don't know how I am suppose to start dating. How am I suppose to go to dinner and awkwardly check my glucose and give myself a shot. And I am getting a CGM and omnipod soon but then how do I deal with the awfulness of getting intimate with someone when I have stuff stuck all over me.

How do you go from being like an other 26 year old to one with diabetes?! I feel so distant from everyone I know now because no one can understand any of this and I hate to be treated like I'm damaged.

Temper Control

Sarah — Sun, 11 Nov 2012 16:27:57 GMT

Hello everyone,

Lately my sugars are affecting my temper control and I can`t really control myself. I am good when im good but when my sugars skyrocket my personality is affected over the top. I was really, wondering about how other wise can i control it. Any Ideas

Insalin Dosage

Sarah — Tue, 31 Jul 2012 02:48:58 GMT

I get my insalin at 8:30 am and 6:00 pm and then at 8:30 pm. I used to get 2 needles @ 6:00 but my blood sugar got them spaced out so im definetely not used to it . last night and right now i forgot my last needle at 8:30 pm. Do you have ways to remember???

Im getting a watch but otherwise please tell me more ways.

XO hugs and kisses OX,

Sarah (!__!)

Peer Pressure from Family

Sarah — Wed, 25 Jul 2012 17:48:14 GMT

Hello My name is Sarah, I am nearly 11 and is going into grade Six. After Ive got out of the hospital the only person i want around is my mom, you see my parents are divorced and i dont like the choices my dad makes. he always wants to know my sugars and i dont want him to know. #1 my mom has full custody #2 he needs to give me my personal space. What do i do? :'(

Summer Daycare centers or care for Type 1 Diabetes

markcasey04 — Mon, 02 Jul 2012 20:27:35 GMT

Hi,

My 8 year old son has diabetes and we are looking for a daycarenter or someone that who would be able to care for him. Someone who has cared for or currently caring for Type 1 diabetic children. The daycare center we have him in this summer is not working out and not many centers want to take him or even learn about it. We both work in Dallas, TX but live in Allen, TX. Please let me know if anyone knows of anyone.

Thank you,

Lisa

A Great Boyfriend

sugarbaby — Thu, 21 Jun 2012 02:19:25 GMT

So I'm in a new relationship (we've been dating about 3 months) and this guy just keeps impressing me. We're both in high school and we both have big dreams for our futures, respectively. I am planning on going to school biochem premed and ultimately becoming a researching endocrinologist. That being said I am a HUGE diabetes geek. I am actually starting some research in a college lab next year (my senior year). Diabetes as a whole fascinates me and not only does this guy put up with my frequent rants, he is genuinely interested in it too. Not only that, but he wants to learn what it's like, as possible as that is. He has told me that he wants to put in a pump site (like in him, to see what it feels like) and he wants to test his blood sugar (if I ever remember to bring a spare lancet) and he asks a lot of questions about it too. His family, especially his dad, is like that too. The other night I was over there for supper and his dad and I (the rest of the family was there too) but his dad was very interested) talked about diabetes and complications and stuff like that for over an hour.

Anyways, I forgot where I was going with this, but I just wanted to gush a bit and hopefully offer a bit of hope that there are great guys out there!

What they don't tell you when you young and newly dx'ed...

TracyMichelle — Mon, 21 May 2012 16:29:51 GMT

I was Dx'ed in 1987 with Type 1 and was floored I was 19 and scared to death. I spent the first 3 years crying horribly each and every time I had to take a shot. But I got through it all although mostly alone. I am married with 2 adult kids and 0 friends. For the last 2 years I have been in and out of the hospital more times than I can count. Each time the same thing Nausea and Vomiting so badly at times I rip some little tub between tummy and intestines Bleeding badly. All due to high sugars and now the nerves are dieing. They don't tell you things like this when your young. Five years ago I was put on a pump hopeful that I could avoid future problems. Unfortunatly I was too late. I have pain so bad that I have no life anymore. And Dr's that really don't give a rat's butt about my pain and that continues the cycle of high sugars cuz I hurt so bad and controlling my sugars with insulin only and no pain meds is dangerous.

Sorry I ramble just frustrated as I just got out of the hospital on Friday.

Thanks for letting me ramble on.

TracyMichelle

Need a suggestion,its very depressing......plzzz

sweety — Thu, 10 May 2012 06:50:21 GMT

Hiiiiiii everyone,

Im 23yr old doctor,with type1.Its been 5yrs im diagnosed wit type 1.I have avery good doctors family background and im very happy wit wat i have(regarding DM).My blood sugar levels are always under very good control and i dont even remember that im a diabetic and my family also dont remember that im wit DM.

While everything is going well wit my life,i just finished my graduation and according to my parents wish i got married(arranged marriage) this march 2012,and thts d reason why im suffering alot.I dont know why guys behave in such a stupid way when their wife is diabetic.Before performing marriage my parents informed everything about diabetes to the guy parents and to him and wit all the enquiries they agreed to marry me.

Now its not even past 2months of our marriage(my husband is an engineer) we both had a very good time for 20days after our marriage.after that he left me to his work place telling me that il search a house and take you there.After he left there he slowly stopped talking to me and after a lot of struggle he came to his hometown and when asked regarding this he's telling that he got sum fear tht the disease is very serious and if anythng happens to me how can he make me survive.At that tym my brother(he's a doctor doing his second year post graduation)asked him what fears are you having regarding my sister DM,and he's is not willing to tell anything abt that but only telling that im worried worried worried.I dont understand onething im just 23 and how can he ask if anything happens and v all know pretty well that nothing will be wrong when our bloodsugar levels are under very good control.

So now he's asking to write all the dowry which was told by my father to register as joint account on both of our name so that he can take care of me whenever needed.And while telling that his father mentioned that if at all in any case i die then the property should belong to my husband,because of that sentence told by his dad my parents were scared that after writing the property if they are planning to kill me.

After all this talks are finished both of our parents,told to my husband to talk to me properly as earlier and they kept one date for taking me to his place in the mean tym the registration will be done,and after that he went back to his work place and now when im calling to him he's not responding properly only telling that im sleeping or going to eat talk to u later.somehow by his talks i understood that he's avoiding to talk.My problem is that he wont share anything wit me.

PLZ PLZ PLZ give me a suggestion wat to do now.but plz dont suggest me to break up wit my husband and stay alone i cannot do that i loved him alottt and i want my husband back as earlier.Im not able to concentrate on anything and im very depressed.plz plz plz suggest me wat should i do to get back to my husbands love.PLZ SUGGEST ME AND HELP ME REGARDING THIS.WAITING FOR UR REPLY

WITH LOADS OF PAIN

Sweety.

Who is your number 1?

Gina — Wed, 15 Feb 2012 02:56:31 GMT

JDRF was founded by parents of children with type 1 diabetes (T1D) more than 40 years ago. Those children are now adults with T1D, and JDRF continues to bring together people of all ages and stages of the disease and their loved ones. We are in this together. We are one. We want to hear about your #1 -- the person or people you are most passionate to see cured -- whether it's yourself, a family member, friend, student, or other. We'd really like to hear from you.

Share your story! http://www.jdrf.org/index.cfm?page_id=116723

I'm worrying my boyfriend sick.:( Advice please

Hayley Schreiter — Fri, 26 Aug 2011 13:17:46 GMT

I'm not sure how many of your boyfriends or girlfriends or husbands or wives worry about your blood sugars as much as my boyfriend does, but I'm hoping there's at least one person that can help me or give me advice about what to do. :(

My boyfriend freaks out when I don't answer my phone in the morning (or after I've gone on a run, or to the y, or basically anytime) because he automatically assumes that I probably went low and died in my sleep.

I was dumb enough one day to tell him the story I read online about a man who slept on his pump wrong, and accidentally primed his whole reservoir into his body. By the time someone found him in the morning, he was dead from hypoglycemic shock.

I wish I had never said anything about that, but the truth is that diabetes can be scary if we aren't careful.

Whenever we go out, he constantly reminds me to check my blood sugar or remember to bring juice (I do have an awful memory, so I actually do appreciate when he reminds me to do things like this sometimes) but my phone was on low volume this morning and he called me like 16 times and I didn't wake up to any of them (I am a deep sleeper). I know he assumed that my blood sugar was really low because I'd been drinking the night before, and now he's really mad because he worries about me and gets stressed when he can't reach me.

I don't know what else to do to make sure that he feels reassured about the fact that I won't die from having a hypoglycemic attack, because it could possibly happen, and I don't want to belittle that. The only thing I can think of to do is to buy another alarm clock (I use the kind with bells on top but you can only set 1 alarm) to make sure I actually get up and check when I'm supposed to. Even with my phone on the highest volume, it doesn't always wake me up. Also, I forgot to say, but I have never slept through a low. I have woken myself up many times within the past 13 years without an alarm--yeah, sometimes my blood sugars have been scary low (28, 26) but I still don't want to risk it and make my boyfriend more worried than he needs to be.

Any advice would be appreciated--

Hayley

Sibling with diabetes

Matthew — Wed, 24 Aug 2011 22:39:25 GMT

Hey guys, I'm a diabetic but so is my younger brother who's 8. This new school year was his first time going to school with diabetes and he's been coming home crying because some of the kids make fun of him for taking shots or checking his sugar. We live with my uncle and he's not the sympathetic type so I feel like it's my job to make him happy or at least want to go to school. I was diagnosed when I was a sophomore so I never went through what he's going through. Any suggestions on what to say because I have no clue

A1C is out of control

Cara — Wed, 17 Aug 2011 21:29:06 GMT

I currently have a T1 daughter in her third year of college; she was diagnosed when she was 9. Before leaving for college and while living at home her A1C was consistently in the 7s and 8s. Since moving out to college, she is now at 10+. I am at a loss for what to do. She does not want to discuss this with me. She wears an insulin pump and admitted that she no longer checks her numbers. It doesn't sound like she even boluses after her meals. As a parent, what can I do? I cannot sleep at night knowing what could happen to her down the road. Is anyone else in this situation where they have lost all control? Will she eventually come to her senses and realize that it is up to her to manage this disease?

Wife of type 1 diabetic, worry about inheritance

spedteacher — Thu, 07 Apr 2011 00:14:23 GMT

Hi everyone,

I am new to this site. I am a wife to a wonderful husband who has type 1, diagnosed at age 8. We have been married 5 years, and have a daughter, age 3.5, and a newborn son, a week old. This is partly postpartum hormones, but I have a lot of worry on my mind right now over inheritance of type 1 from my husband. We have had our daughter tested with TrialNet for autoantibodies that may predispose her to type 1 since she was 1 year old, and plan to do the same with our son.

With research, it seems like each of my children has about a 12% chance of inheritance. I guess I'm just looking to connect with someone in a similar situation or with anyone who wants to share positive experiences.

Thanks!

Any suggestions for how to deal with an unsupportive spouse?

Angie — Thu, 31 Mar 2011 02:58:58 GMT

And by unsupportive I mean, does not want me to have the Omnipod, says it is too expensive and I don't really need it since I've already been giving myself shots for 28 years so why not just keep doing it. Does not want me to get CGM, again, too expensive. Says I am being selfish. Makes me feel guilty for all my prescriptions, dr appmts, co-pays, high insurance rates, yada yada yada....... Says having type 1 isn't really that big of a deal and doesn't think I need help, support, new equipment. Says it's not as hard to live with as I say it is.

??????????????

CAN I GET A WOOT WOOT? (I love you, mom)

Hayley Schreiter — Thu, 10 Mar 2011 22:59:02 GMT

I wanted to create a post dedicated to recognizing all of the hard work and passion that family members, boyfriends, girlfriends, husbands, wives, brothers, sisters, and friends of type 1's exemplify.

While I realize that some type 1's may not find support from family, I think it's important to acknowledge the family members who do support what we go through. (Ahem, all of the moms and dads, and other family members on this site!)

I cannot even imagine what my mom went through (and continues to go through) as a parent of a type 1 diabetic. I remember sitting in her lap on a hospital bed while the doctor told her that my tests were positive--I asked her, "Mom, what does positive mean?" and she started crying. She has helped me SO much over the years by setting up walk teams, buying my supplies, setting up my endo appointments, helping me log my numbers, setting up a carb ratio, I could go on and on.

I think most of us are so incredibly grateful to have people like you guys to support us. I know I couldn't do it alone.

diabetes can ruin a friendship..

Janie Udicious — Sun, 02 Jan 2011 01:04:35 GMT

Hey everyone! Alright so I decided to come on here to vent about something that was bugging me for a while. Here it is:

Over the last few months my one friend just slowly stopped talking to me. We were always really close and stuff, and I could tell her everything. I'm going to keep her name anonymous, so I'll call her B. We did everything together and always had a lot of fun. So when B just stopped talking to me, I was really confused. She goes to a school near mine, but not mine. We met at a baseball game a few years ago. So anyway, I figured maybe B was just making a lot of friends and she didn't have as much time for me. It hurt but I understood because she doesn't go to my school so we don't see each other as much. So one day I was talking to one of my other friends, who also knows B pretty well. I talked to her about how it was so weird that B just stopped talking to me. My friend then said, "Oh yes, I think I know why. She told me that ever since you were diagnosed with diabetes, she had not wanted to be around you. She said that you testing your sugars and giving yourself shots was annoying. She also said that you were using diabetes as an advantage for attention." When I heard that, I was so shocked and just hurt. I couldn't believe anyone could be like that. It was just horrible.

A few days later I ran into B at a local event. I decided it would be a good idea to confront her and ask her why she would say that. We talked about it and she said that diabetes "is just so gross with the needles and blood" and that "she can't be around someone like that". I told her I couldn't help the way I was and that I would change it if I could. B then said that she just wished I didn't have to test in front of her. I told her that she should of told me that because I can't really read her mind. Everyone handles that kind of stuff different. One disease shouldn't ruin a friendship. She then got mad at me and just walked away. I felt so different then everyone else at that moment. I'm sorry, I just wanted to vent and show you all how not everyone is there for you I guess.

Don't you think it was wrong the way she acted? Has this happened to anyone here, or has anyone been looked down on because of your disease? I'd appreciate the comments and personal stories. Thank you, I hope everyone has a healthy and happy 2011! :)

Diabetic Mom, question on solid foods for other diabetic moms

Rachel — Wed, 29 Dec 2010 12:10:02 GMT

I have a 4 month old son who eats every 2.5-3 hours even through the night. I am tempted to give him some cereal at night with his bottle so he will sleep through the night however this nurse practitioner at his pediatricians said that I can't do that as there is a link between starting a child on solid foods before 6 months and diabetes. Everyone I know has started their kids on cereals before 6 months. Is this lady a quack or has anyone else heard this?

Please take a few seconds to read our story and vote! Thanks!

Rebecca — Mon, 20 Dec 2010 05:54:55 GMT

I am a type 1 diabetic and have been since i was 12. I am 22 now and I have been extremely lucky to find such a caring and loving boyfriend. He has always been there for me and has helped me manage and deal with my diabetes. I am living in our home town in NJ working after recently graduating college, he has one semester left and is in NC. It's hard being apart and can't wait to be together again soon. He is trying to win a ring so we can get engaged and start our life together. With college loans and traveling bc of being so far apart its been hard to save enough. please vote it only takes a minute, just click the link below. You can also read more about us there! Thank you! It would mean so much to both of us!

http://apps.facebook.com/ritanigroomgiveaway/contests/81163/voteable_entries/13018238?ogn=facebook&order=recency&ref=mf

is it true?

Alena — Fri, 26 Nov 2010 01:30:00 GMT

my doctor told me that if our family fights alot were most likely to focus on the fighting more then our diabeties and so it effects our blood sugars

What do you think??

Question from a highly confused youth...

Cat — Thu, 18 Nov 2010 03:16:00 GMT

Do you ever feel like people just don't get it? A wave of loneliness hit me hust he other day and I felt like my parents and my friends just didn't get it. They get upset with me everytime I forget to test once, but remember ten minutes later, or when my blood sugar is high. I'm only a kid for goodness sake! I didn't ask for all this stress! I feel like they expect me to act like a grown up, but I'm not a grown up, I'm barely a teenager! I've had to act like a grown up since I was eight and I can't stand being different than everyone else.

So after that long rant on injustice, my question is...

Do you ever feel like everyone expects you to just grow up to fast?

Becasuse I think fourteen is a bit young to be a grown up.

Anybody out there a spouse of Type 1?

emkris — Sun, 31 Oct 2010 00:00:34 GMT

Hi. My husband, Eric, has Type 1 diabetes. He was diagnosed nine years ago, six months after we started dating. We've been learning to live with his condition ever since. We're still learning.

Things haven't been going so well, lately. The hardest part for me, right now, is having no one who understands to talk to about it. I'd be really interested in hearing from other spouses, but input from other family members or people who have Type 1 themselves is also welcomed.

For the past two weeks, night time has been a problem. This morning he was down to at least 40 when I caught it. Getting him to drink juice was also a bit of a struggle. About two weeks ago I called the paramedics. I'm pretty sure he was on the verge of a seizure. He wasn't able to talk or sit up. He was down to at least 30, probably lower. He was able to lift his head and swallow and he did drink some juice. I almost gave him glucagon.

Since then, I've been making him check himself every morning when I wake up. He's been doing okay, either high, more or less normal, and one day down to 60. The mistake I made this morning was letting us sleep in for an hour. He's been trying to adjust his Lantus and he has an appointment with his specialist in about a month. I want him to get an insulin pump.

I'm struggling with a lot of issues related to his diabetes right now. The big one is just plain, simple, worry. Not only am I worried about his immediate health and safety, but I'm also starting to think about the big picture, long term stuff, like his life expectancy and how that's going to affect me and our future. I'm also having trouble with my boss, who seems incapable of understanding that my husband has an incurable, life threatening disease and that it is not totally under our control, and that I'm not going to be able to work sometimes if I need to take care of him. I'm also having a hard time getting him to understand the seriousness of his condition when he gets extremely low, because he either has amnesia or is too confused when it happens to have a grasp on it.

So, if anyone has any words of advice, comfort, or commiseration, I'd be glad to hear them! Thanks, Emily

Frustrated with being the only '1'

Melinda — Sat, 30 Oct 2010 02:35:10 GMT

I have had t1 for 5 and a half years, and am the only one in my family that has been affected (thank goodness). I like to talk to my husband (whom I have been with since before I was dxed) and other family members about my successes and challenges (simply because I like them to be aware of what's happening with me and my health) but sometimes I feel like they are listening but not hearing my comments, fears, worries, and so on.

I feel like they just smile and nod to get me to STFU about something they don't either care about at that time or know enough about to wanna try to care. Case and point, I was reading something from a post here outloud to my husband and he looked at me like I had grown a third eye. When I asked him what was up, he said "I'm listening" (obviously not--it wasn't an "I'm listening moment )*sigh*

I'm curious if any of you guys have felt this way. Isolated, ignored, forgotten, the only '1'?

...

Alysha — Mon, 18 Oct 2010 00:33:28 GMT

So my sister just got diagnosed with type 1 and it breaks my heart to see her go through exactly what I went through.. I hoped and prayed that this day would never come. She's only a year younger than me so we're really close but I don't know how to help her.. We're totally different when it comes to our perception on things. When I was diagnosed I accepted it without a tear and made it something that made me stronger, not weaker. My sister is more sensitive and has broken down many times.. I try to empathize but I have no clue if it works. And whats worse is that she was there when I went through it all so she knows how "easy I made it look" and that makes her even more mad that she can't react the same way.. I cant help it if I'm not an emotional person, its just who I am! I feel like a lot of it is my fault even though I'm trying really hard to be there for her 24/7 :(