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CarlyesHope

New Onset Diabetes at the age of 12

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Catie and Emily

As you asked about friends and all that great stuff. I have gained more friends then I did before. They come in handy when you are having highs and lows.

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Lee73

Hi Kelly,

 

Welcome. This is a great place for support, info and answers.

 

My sister was diagnosed when she was nine. Even though my Dad has been type I since his twenties and we weren't strangers to diabetes, my sister's dx hit us hard as a family. My parents, my other sisters and especially my sister with the new diagnoses all took it very hard at first. I remember those days as a some of the saddest of my childhood. To make matters worse my sister was rushed to the hospital in a semi coma on her birthday. It was extremely traumatic.

I say, cry. Cry all you want. It will get easier, but right now you are entitled to your emotions and I understand that no amount of reassurance makes the shock, saddness and unfairness of it go away. When my sister was dxed it was the first time (and last time) I saw my father cry. There is an emotional aspect to diabetes that you should not be ashamed to confront. The drama, the ups and downs of it all are all a part of dealing with diabetes.

In my experience, when we had all cried ourselves dry, we rolled up our sleeves and just got on with it. Day by day a sense of normalcy returned to our household. More importantly my sister's health improved and she slowly adjusted to her new dx.

My thoughts are with you and your daughter and your whole family. Please keep us posted and feel free to vent when you fee the need.

 

Lee

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CarlyesHope

Can someone tell me why???

 

Why does a day that starts out so good end so bad? How does a little girl who went to school, who had fun seeing her friends, come home fine then ten minutes later be depressed and go down hill every minute from there? It is 20 after 7 and it seems like i have been up for two weeks straight, i don't even know what to say to her anymore. It will get better i say - but its not better now she says. life will get back to normal i say - life will never be normal again she says. Pretty soon this will be normal i say - normal will never be making yourself bleed she says. and the list continues for hours or until i have exhausted all things positive from this earth. Her stomach hurts, she isn't eating good, she has headaches.... she sees the dr. on Thrusday morning....

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CarlyesHope

Catie and Emily

 

do you remember how long it took you before you accepted it as part of your life?

 

Kelly

Carlye's mom

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am1977

Grr...:mad: I just lost my message! :mad: :mad: :mad:

 

Here goes my 2nd go at this!

 

I wish I had the answers to your questions, I really do. I think we have all felt the way Carlye feels and have asked the same questions...why is this happening, why is life so hard, why me? Those are very normal feelings and emotions. Sadly, I don't think there are any real or true answers to this. I don't think even scientists and researchers know (although I think they are making progress). I just hope one day they will know.

 

Remind Carlye that she isn't alone by any means in how she feels. We've all been in her shoes along with many, many others of all ages, from babies to the elderly. It's good that she vent and express the emotions, fears, and anger she feels. Like we have said, she has every right to how she feels and she's 100% right. Dealing with testing, diet, injections, and the many other aspects of Diabetes isn't normal for any 12 year old. It's sad that any child has to deal with this. I truly believe that childhood and adolescence is hard enough without dealing with a condition such as diabetes. I feel I was lucky that (if I had to get it) I got it at 24. Anyway, yes, it's not fair, but there comes a point where the best thing you can do is come to terms and accept the reality of the situation. That way you can move forward and deal with managing it the best you can.

 

Diabetes isn't a disease I'd wish on anyone, but what's important to remember is that it CAN be managed and she can live a long, healthy , and happy life. Please tell her that. :)

 

I wish you the best!

 

Lots of hugs.

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Catie and Emily
Catie and Emily

 

do you remember how long it took you before you accepted it as part of your life?

 

Kelly

Carlye's mom

 

Well we had been around it alot since our 2 grandmas were also diabetic along with our cousin that is our age. So it was like second nature. I, Catie had gotten used to it couple weeks after I was diagnosed but Emily took about a month. Like I said we had close family that we saw about every weekend or every summer with it so it was easier for us.

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Mick

Kelly--Hi! Better late than never, I'm the "Old man of the mountain" around here. My story, as a letter you your daughter, is below. I hope it inspires and brings hope...

 

Dear Carlye--

 

I was just exactly your age--in the middle of 7th grade--when I was diagnosed with T1 diabetes. That was 40 years ago, in February of 1965. I had a blood sugar of about 1000, just like you, and my weight had gone from about 120 to less than 70 lbs. Because of how primitive things were back then, I ended up in a coma for 3 days, and was in the hospital for a month. This was back before we had disposable needles and syringes. I had one glass syringe with a HUGE needle attached, and I had to boil it twice a day. Every couple of weeks, my dad took my needle down to his workbench and sharpened it on his whetstone. We didn't have blood sugar tests at home yet either. We had to pee in a cup, measure 5 drops of pee and 10 drops of water into a test tube, and add a chemical called Benedict's Solution, and then boil the whole thing. It would turn a color, and we would compare that to a color chart. All that told me was if I had such high sugar it was leaking thru my kidneys and spilling out in my urine--2 hours earlier. I did this twice a day. I got my blood sugar tested by the doctor twice a year...

 

When I finally did go back to school, I was just happy to be alive, because I'd gotten a pretty good idea that, during the coma, I'd come very close to dying. At first, school was not easy. I'd missed a lot of the year, had so much to catch up on I was overwhelmed. Plus, back then, my doctor advised us that the only way to know if my insulin was working was if I could feel it--which normally meant they kept my sugars down around 70...! So I was semi-hypoglycemic much of my teen years. I had problems concentrating, would space out many times each day, and sometimes even lose consciousness entirely. However, with all these problems, I remained very grateful just to be alive. I got frustrated. I got angry. I got sad. But I would always remind myself how lucky I was to be alive at all. When I'd think, "This is just NOT fair!!", I'd always try to remember my good luck at being born after insulin was discovered. The very fact of life--even with the terrible limitations, compromises, and difficulties (not to mention those 10-penny needles!)--was miraculous enough to compensate for the suffering I felt I was being put thru.

 

My teen years, thru Middle and High School, actually proceeded normally enough. I got a driver's license, got good grades by working hard, played in a rock band, protested against the Vietnam War, and felt that I was having just the kind of life I might have imagined without diabetes. This was before they had even invented diet soft drinks, so my food choices were very limited. I went away to college, dropped out, traveled around, finished college, got married... and basically had a wonderful, fulfilled, fabulous life. I raised 2 great children of my own--one now in college, the other in High School--have had a satisfying 30-year career as a school teacher, and at almost 53, I'm beginning to look forward to retirement.

 

Look forward... I have NEVER looked back much, and I have never looked back in anger. This was the life I was supposed to have. I think the best parts of my personality--my courage, compassion, discipline, curiosity--are all due to my growing up with diabetes. Diabetes never stopped me from doing anything. I've climbed a glacier in the Swiss Alps, a volcano in Hawaii, a pyramid in Mexico, and other semi-extreme stunts. I've traveled everywhere, from Africa to Latin America, thru Europe and the Middle East. I ski, scuba dive, water ski, swim, cycle... you get the idea--I do what I want, and the diabetes can come along for the ride. I was never reckless or foolish, but I never let anything get in my way. Oh--stubbornness--that too...! I have no complications after 40 years, and feel better than I did 20 years ago. 20 years ago was when they told me I was supposed to die. HA! I showed them...

 

Carlye, sweetie--you have THE MOST WONDERFUL LIFE you can imagine before you. All you need to do is have the energy, courage and will to live it, to go after it. No doubts. No regrets. No lying to yourself. With love and devotion, spirit and humor, you will go out there and have it all. I did. I am. I will continue to do so.

 

Much love and luck

(we need both in force)

Michael

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CarlyesHope

From Carlye's Mom Kelly.

 

Mick, I hope this isn't totally evil of me, but i just want to add .... and you had to walk up hill both ways...carrying that cup of pee.... and that is only because that is something i used to say to my dad, because he used to say it to me, and now Carlye says it to me.....

 

Carlye has not read your story yet, she went to bed early, too wiped out from the days events, i can't wait to show her. Thank you, all of you for sharing. it is making my life easier - - hopefully soon it will help make Carlye's a little easier too - - when she is ready to open up and talk.

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Lee73

Mick,

 

Your story has inspired and brought hope to me. I am going to try to share it with my sister. Thanks for sharing.

 

Lee

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gettingby

Mick,

I have to say that your story brought tears to my eyes. I guess it was just the fact of my memories bringing everything I went thru in the beginning and now to the surface. Thanks for sharing your story and thanks to Meech for sharing his. :D This disease is not the end for us, it's just a new chapter of our lives and we have to decide how this chapter will play out.

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CarlyesHope

Mick,

 

I have read your story five times now, and every time i cry, then laugh, then cry some more. I went to bed last night thinking that we would never get over this hill even though people keep telling us we will and as i read your story again today i feel as if i have just taken one giant leap. I hope, hope, hope Carlye will feel the same. I hope it is okay but i have printed it off, put it on nice paper and framed it to put in her room so that when she is ready it will be a source of insperation to her. She is just not ready yet.

 

Do any of you have any12 year olds (or close to 12) that have this? she could really use someone to talk to. We have tried to find groups around here, but no luck just yet, all seem to be too young for her or too old... i am worried that if i don't get her talking to someone her age soon it will be too late to save the girl she once was....

 

:( kelly

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Dewey

Mick, you are extremely inspirational to everyone, especially those who are newly diagnosed, and those who are having a rough go of it.

 

I may have stated this before, but when I was newly diagnosed (at 10), I didn't cry...went into the bathroom at the hospital, looked in the mirror, lifted my fist and said, "I'm gonna WIN!" To this day, I always try to remain positive in the comfort of knowing that I can control my Diabetes, and Not let it control me. Sure, I've had rough days, but am also aware that others may not be as fortunate. I think of and feel for them. When I upgraded to the MM507, I donated my 506 (insulin pump, and some supplies) to the Navajo Reservation, to try and assist a fellow Diabetic in need. My only wish is that I could do more. Hang in there Carlye and everyone....It's a long and sometimes rough road, but we all share commonalities that make the travel more bearable. :)

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nantomsuethom

Kelly I know a girl who is 11 and would love to talk to her. She will be in the clinic at 12 for her insulin. I will get her email address or if its ok I will give her yours.

Her name is Jessica and can be a great support person for Carlye.

 

I would offer Thomas but he is so quiet and shy I am not sure how supportive he would be.

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CarlyesHope

Dewey,

 

I wish at 10 I, and Carlye, were 1/4 as strong as you were. We are not. I keep telling myself we are, but we have to be realistic too.

 

Pumpers,

 

Do any of you know anything about "testing" the pumps by using saline (sp?) to see if you like it? Carlye's dad is going to a clinic for MiniMed today and they said Carlye could test it out for two days with saline if she would like. Also did any of your insurances cover the cost? Third, how soon did you go on the pump after being diagnosed?

 

Kelly

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nantomsuethom

Hi Kelly,

 

Thomas used his pump for a week with saline before setting it up with insulin.

 

He was diagnosed for 3 months before he got his pump. They said they like to wait 6 mo. but we really pushed (I whined) to get it sooner.

 

Our insurance (Aetna) covers the pump and pump supplies 100%.

 

Good luck.

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duck

Kelly,

 

I was dx'd in 1990 and went on the pump in 2001--my family and friends wish I had gone on it sooner (search on my name and the word "pump" and you'll find my story somewhere). My insurance covers the pump.

 

Get alllllllll the info you can. Thinking back, I could have managed having a pump in High School and college. But the only thing that I think may have been a hang-up (and this may not be "family oriented" or "G-Rated") would have been hooking up in college. Obviously, sometimes that can get "intimate" and sometimes it happens with people you didn't know too well (blush)...In my mind having to explain what the heck that insertion set is could kill the mood.

 

I had no problem getting on the pump since my hunny at the time is now my wife, and she pushed for me getting on the pump. Despite what I said above, it makes my life so much better the trade-off would be worth it, in my mind. And it's not like the ladies were lining up outside my door anyway, LOL. :D

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duck

oh! Call your insurance company--Pumps are so common, the person answering the phone should be able to look it up. Keep in mind they may need to look under "Durable Medical Goods" or "Durable Medical Expenses".

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CarlyesHope

Cool, thanks...

 

You all do realize that i have so much research to do that i will never finish it anytime in the near say 50 years....

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nantomsuethom

I understand about the amount of research. I had done so much research that I had 3 pages of notes/questions to bring to the doctor. I never did bring them though.

 

Little by little the questions that I had were answered. The answers just kind of fell into place after some time, if that makes sense. You can't absorb it all at once.

 

I don't remember exactly how long it took, but before long we were doing everything we did before diabetes, including our favorite thing- eating out!

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duck

Hey Kelly,

 

Try explaining how to breathe to someone...You can also do a lot of research on the mechanics of respiration, and it will overwhelm you. But in the end, you take about 22,000 breaths a day without thinking about it.

 

Capiche?

 

:D

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CarlyesHope

Well, I am a pre-law student, and i ran accross some stuff today that was pretty interesting. I haven't researched it too much so please research it on your own too, this is at the bottom of my pile but:

 

diabete makes you legally disabled

when you are legally diabled you are entitled to social security from the time at which you are diagnosed - under certain conditions (monitary, working etc)

with regards to children, another factor, depending on your state is, how much work the parent missed, how much you have to pay out in medical each year ect.

 

for us, my husband make a great income but our medical insurance stinks (opps, almost swore) so i think we end up, pending a hearing, qualifiing for some extra help from uncle sam - which of course is a switch! Might as well use the social security while there is some left to use!

 

It is worth checking into, here is the main site, and the childrens site, remember you may also have to check your state rules.

kids:

http://www.ssa.gov/pubs/10026.html

main

http://www.socialsecurity.gov/d&s1.htm

 

Kelly

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