5 things that you want the world to know about D

[karonray]

I am working on facts and myths about all sorts of conditions. What would you put down if you had to list 5 facts about diabetes? This information will be going out to a lot of people and i want to know from you what to tell them about D.

Thanks for your input :cwds:

[hold48398]

1) Type 1 diabetes cannot be prevented
2) It is chronic, lifelong illness
3) It's all about the carbs, not the sugar
4) Insulin is a lifesaver, literally.
5) It requires 24/7/365 care, monitoring and constant checking to prevent life-threatening high- or low blood sugar incidents


Thank you! :)

[hallenbeckfamily]

Ditto to what Marisa wrote~ And----
~ Suger did not cause this,nothing the parents or child "did" caused this
~ Diabetes type 1 will not go away with excercise
~They will NOT "grow out of it" when they get older
~ T-1 D diet does not change after dx!! They still can eat same foods!!! In moderation but suger is still allowed

That last one is my biggest comment from people "why are you letting him eat that,he can't have pie" or ice cream or b-day cake ect--you get the pic~Jennifer

[wendyc]

I second what everyone else says.

I'd like to add:

I will not kill my child by giving her/him sugar. It is allowed in moderation (just as it should be with all people).

Insulin is not a cure. It is the lifesaving band-aid until there is a cure.

[Emma'sDad]

My daughter didn't get D by not being fat!! A woman the other day said, wow, she's so young and she's not even fat, she's skin and bones, how did that happen!!!! ARGH!!

[kel4han]

Ditto to Hold48398....but I would fit in somewhere that TYPE I is in no way, shape or form the same as TYPE 2.

[payam7777777]

id like to let the world know its a shame for science/scientific community and all those Mr. 2-3 phDs that they've not yet been able to find a cure.

id like the world know that they cant even *imagine* what we're going thru.

that every ~60 seconds a new child is dx'ed with D. just like HIV... every 60 second a person dies because of HIV. The difference is that HIV generally kills ~sinners and addicts but D damages innocent children. World must understand that its more important to spend $ saving innocent preschoolers than gays and addicts.

that im sick and tired of D.

that it sucks.

that its beyond my ability to describe how bad it is.

[hallenbeckfamily]

Payam7777777~ Well said!! It just flat out sucks!! and unless you live it you will NEVER understand how much it sucks!~Jennifer

[LantusFiend]

Diabetes management is a lot harder than changing diet and taking shots- it's about being aware of yourself 24/7. If a diabetic has complications, that doesn't mean he or she skipped shots.
I didn't get diabetes from something I or my parents did wrong.
Diabetics on insulin are not necessarily worse off than those off insulin.
I can eat what you can, but it takes some effort.

I want therapists, LCSWs and psychologists to realize that somebody who is constantly exhausted, reporting headaches, weight loss, nausea, and polluted tasting water should not be told that he looks just fine and therefore must be.
I want doctors to know: 17 is not too old to get type 1 diabetes!

[allisa]

I think this is a great thread....

1, Disease should be renamed to simply "type 1"....leave the Diabetes off...too confusing

2. This is a auto-immune disease that as far as we know can not be prevented and has nothing to do with weight, lifestyle, or activity level.

3. All of us use insulin in our bodies daily, even hourly and we never even think about it....our wonderful bodies just do it all for us. A child with Diabetes has to try and achieve what everyone else does effortlessly. And to do that, they must calculate every bit of food or drink that goes into their mouth, they need to know the caloric breakdown and carb, fat, and protien counts. They need to learn how their body's metabolism reacts to different activity levels they may be encoutering that day and then figure out how much insulin to give themsleves. It can be an emotionally exhausting exercise that must be repeated at least 5-6 times daily. And they can never take a vacation from it, not even for a day.

4. Aside from the mental process that must accompany the simple act of eating, children with Diabetes and their parents live with the fear of human error and unkown factors. Blood sugar may plummet if too much insulin is given or activity level exceeds expectations. This plummet can cause seizures if not treated in time. This can happen rapidly ( within an hour). On the adverse side is the worry of high blood sugars and the potential for long term damage that could be inflicted upon organs.

5. We are grateful to live in an age where insulins and pumps are readily available. Meters are a wonderful tool that continue to evolve and perfect themselves. But it is important to remember that NONE of these things are a cure. Just as dialysis is a tool to help those in kidney failure, insulin and meters are a necessary tool for treating Diabetes, but they are not a cure.

Sorry so long.....and beleive it or not....I edited myself !! LOL



PS.......not trying to hijack the thread....but, have to throw in my 2 cents.......NO child in the world deserves diabetes.....but not all HIV patients are "addicts and sinners"......not sure of my stats....but I'd guess that there are just as many innocent children with HIV as there are children with Diabetes. And I wouldn't feel comfortable to assume that an adult with HIV somehow deserved that fate :cwds:

[lilwitte]

I think that what everyone else has said is great. I think that it should be added that children with diabetes can do anything that other children do. That there should be nothing that should hold them back.


PS.......not trying to hijack the thread....but, have to throw in my 2 cents.......NO child in the world deserves diabetes.....but not all HIV patients are "addicts and sinners"......not sure of my stats....but I'd guess that there are just as many innocent children with HIV as there are children with Diabetes. And I wouldn't feel comfortable to assume that an adult with HIV somehow deserved that fate :cwds:

I completely agree with this statement

[Nelson]

It's not just the 4 to 7 shots a day and 7 to 15 finger pricks a day that we have to do to our child to keep him alive.

It's that we can't sit down and eat without a bunch of damn carbohydrate counting and insulin-to-carb ratio analysis to then figure out what to pump into our child at every meal and some snacks.

It's that there is nothing we can do to make it go away or even get any better.

It's the fact that I'm completely exhausted, but my child wants to have pizza with his friends to celebrate the end of their basketball season. If he eats pizza, I'll be up 1/2 the night monitoring blood sugars and giving small correction doses every, few hours. Do I choose childhood for my child or the ability to function at work tomorrow and keep my job?

What about when Derek gets a little common everyday flu . . . oh yeah, there is no such thing any more!

. . . at least he is alive and "healthy". Without this hell of diabetes management, all we'd have is a headstone.

[Nelson]

I need to add a couple more things. These are the other half for me.

T1 in our son is hell. But . . .

- My 9 year old can add, multiply and divide small numbers in his head much faster and more accurately than I or my wife can.

- I have a great new excuse and motivation to learn all about a new field of science/medicine.

- I have been forced to work much more closely, and much more often, with everyday decisions and events that affect my son, making our whole family much closer and more skilled at working together than we ever would have been otherwise.

- We have more cool electronic gadgets and medical paraphernalia around our house than we would without D.

- If I ever need to give myself or anyone else a shot, I'm really really good at doing it now.

- Test-strip containers make really excellent micro sized geocache containers. See www.geocaching.com and/or this ebay listing (http://cgi.ebay.com/Geocache-micro-cache-container-waterproof-with-logsheet_W0QQitemZ320086386572QQihZ011QQcategoryZ2 020QQssPageNameZWDVWQQrdZ1QQcmdZViewItem).

[staciebco]

IIt's the fact that I'm completely exhausted, but my child wants to have pizza with his friends to celebrate the end of their basketball season. If he eats pizza, I'll be up 1/2 the night monitoring blood sugars and giving small correction doses every, few hours. Do I choose childhood for my child or the ability to function at work tomorrow and keep my job?

. . . at least he is alive and "healthy". Without this hell of diabetes management, all we'd have is a headstone.


Bravo! I couldn't agree more. Even after 4 pregnancies, I'm more tired than I think I've ever been. :cwds:

I want the world to know....
my kid is happy and healthy, he just has diabetes.

[piratelight]

5 things? Others have said so many fantastic things (thanks Nelson for the tip about the micro containers - great idea, never thought of that)

D sucks! You adjust and go with the flow but it's always there. It is something that you always need to keep in mind no matter what you are doing.

Bringing up and disciplining children is hard enough without having to wonder if they are so crabby, sensitive, or whatever because of off sugar or something that is not D related

Finding the balance between keeping our children safe and letting them be children - playdates, sports, etc are not simple affairs and finding the right balance can be tough

Finding a babysitter for much needed adult time. (We are fortunate that most of the time my parents can watch our son and we do have a trusted back up sitter so we are luckier than most) Finding a trusted sitter is hard enough for any child never mind when you throw D into the mix.

It is amazing the amount of things that are needed just to keep our children healthy. At times our kitchen looks more like a Dr's office than a kitchen.

No all is negative. We are thankful for the advances that allow us to keep our son alive. We appreicate the simplier things much more now. We are closer as a family and communicate much more because we need to. Our kids know more about healthier eating than many children.

[sammysmom]

The one thing that I can think of that people need to get through their head is that being on an insulin pump does not mean that you have "real bad diabetes"!!!! I get that all the time, people will say "wow your son must have it really bad"!! drives me crazy.....

shannon

[Sari]

I think this is a great thread....

PS.......not trying to hijack the thread....but, have to throw in my 2 cents.......NO child in the world deserves diabetes.....but not all HIV patients are "addicts and sinners"......not sure of my stats....but I'd guess that there are just as many innocent children with HIV as there are children with Diabetes. And I wouldn't feel comfortable to assume that an adult with HIV somehow deserved that fate :cwds:

Oh thank you for saying something. I was actually disgusted when I read that. You want someone to be sympathetic for your child and their crappy disease, don't go bashing someone else's child's disease. Whether the HIV person is gay or a drug addict, this is still someones child and NO ONE deserves HIV or Diabetes!

[Ellen]

Thank you Sari and Allisa.

No one deserves HIV or AIDS, gay, straight or otherwise. Addicts need help. Who is judging who is a "sinner"?

http://www.avert.org/children.htm

At the end of 2006, there were 2.3 million children living with HIV around the world.
Over half a million children became newly infected with HIV in 2006.
Of the 2.9 million people who died of AIDS during 2006, over one in ten were children. Every hour, forty children die as a result of AIDS.

http://www.avert.org/photo_library/images/normal_photo_no_759.JPG



I want the world to know type 1 diabetes needs to be cured because it has the potential to be devastatingly destructive and debilitating.
I want to the world to know it is a challenge to live with type 1 diabetes, 24/7/365.
I want the world to see my son as otherwise healthy and capable and not limited by his disease.
I want the medical professional world to know my son is more than his blood sugar and lab values.
I want the world to know people with diabetes are people first and foremost.

[wendyc]

that every ~60 seconds a new child is dx'ed with D. just like HIV... every 60 second a person dies because of HIV. The difference is that HIV generally kills ~sinners and addicts but D damages innocent children. World must understand that its more important to spend $ saving innocent preschoolers than gays and addicts.

.
Regardless of the choices you make in life, or the lifestyle these lead, these people are not sinners. Addicts need help. No one, regardless of race, creed, color or sexual orientation deserves HIV, nor do they deserve D.

Look at the beautiful picture Ellen posted. Do you think these children "sinned?" They are just the unfortunate recipient of a virus that was passed on to them at birth.

Yes, the world must spend more money on research to help cure D, but they must also spend more money on helping to cure HIV/Aids before an entire generation of children in 3rd world countries are wiped out.
Not all HIV/Aids patients are gay not all are addicts.
Arthur Ashe...Tennis player...blood transfusion
Linda Glaser...Mother/activist...blood transfusion during childbirth
Magic Johnson...Basketball player...poor choices...unprotected sex
Ryan White...Innocent child...hemophiliac...blood transfusion

[LantusFiend]

I forgot the biggest one that kids ask me, can you catch diabetes?

NO YOU CAN NOT CATCH DIABETES.

[Illinifan]

1. Type 1 and Type 2 diabetes are NOT the same thing.

2. If you are not T1 or have a kid that is T1 or you're not a pediatric endo or work for one, my kid and I know more about this freakin' disease and what it takes to manage it than you ever will, so keep your advice to yourself.

3. The human body is not a one function machine. You can count all the carbs, give the correct dose of insulin within prescribed amount of time and a T1D's blood glucose level can still go haywire.

4. Your kid can be a better friend to my kid if he or she gets to know the signs of hypo- and hyper- glycemia for my kid. For the record, Zach gets weepy and quiet when he's low and angry and easily frustrated when he's high.

5. This thing is quickly becoming an epidemic and if you don't already know someone who is T1D now, it's gonna happen sometime, probably sooner rather than later.

[Momof4gr8kids]

I want the world to know people with diabetes are people first and foremost.
That right there is the reason I hate using the words such as diabetic, alcoholic, epileptic, or any other name that only describes the disease. It makes it sound as if that is all that they are.

Most of my 5 have already been stated.
1. No amount of anti oxidants, mind over matter, or other natural routes can cure, nor treat type 1 diabetes. Boosting our childrens immune system will not help their diabetes go away.

2. Even though they both have the name diabetes, they are no where near being the same disease.

3. Type ones should not have to live for the mistakes of type 2's.

4. Fruit is a good thing ~ it is even healthy for those that are insulin challenged. (yesterday my neighbor was shocked that I gave Julia a piece of fruit for low blood sugar, she didn't think Julia could eat fruit, and thought she should have cheese, or something like that)

5. A cure needs to be found, and can only be found with enough resources to do so.

[badshoe]

Type 1 diabetes and type 2 diabetes are not the same thing. For a T1 Sugar is often a life saving necessity to balance insulin.

Type 1 diabetes and type 2 diabetes are not the same thing. What you know about T2 has nothing to do with T1.

Type 1 diabetes and type 2 diabetes are not the same thing. Freak diets and expensive spas will not eliminate the need for medication i.e. insulin for a T1.

Type 1 diabetes and type 2 diabetes are not the same thing. Past diet and exercise has nothing to do with T1.

Type 1 diabetes and type 2 diabetes are not the same thing. Managing T1 is exponentially more work than T2 and bad thing can happen exponentially faster with T1.

[Kaylee's Mommy]

The one thing that I can think of that people need to get through their head is that being on an insulin pump does not mean that you have "real bad diabetes"!!!! I get that all the time, people will say "wow your son must have it really bad"!! drives me crazy.....

shannon

I get this too.. "wow, she's on insulin, she must have a real bad case of it.. ' um, type 1 is type 1 everyone is the same, all on insulin... some may be harder to control than others but its all the same..

[LantusFiend]

I don't like person first language. Here's why not;
women are not called people with femaleness
mathematicians are not called people who work with math
students are not people who study
drivers are not called people who drive.

To say that calling me a diabetic means that diabetic is the most important part of me is untrue; to call me a diabetic means that diabetes is a defining part of my life, as defining as gender, occupation, and skill. Guess what? Diabetes IS as definiting as gender, occupation, hobby, and skil.
To say that I should not be called diabetic is to say that I should not have diabetes as a defining part of who I am, and in some ways it says that it should be shameful. It is not shameful. I am diabetic, like I am student, like I am brother, like I am teenager. I am person with diabetes to the same extent as I am person who is teenage. Awkwardly.

[EmmasMom]

I am person with diabetes to the same extent as I am person who is teenage. Awkwardly.

You crack me up Lantus! In a good way!;)

The term diabetic doesn't bother me either, I just wish it was always type specific!!!


Great thread! I need to print it out and give to all of my friends!

[Momof4gr8kids]

I don't like person first language. Here's why not;
women are not called people with femaleness
mathematicians are not called people who work with math
students are not people who study
drivers are not called people who drive.

To say that calling me a diabetic means that diabetic is the most important part of me is untrue; to call me a diabetic means that diabetes is a defining part of my life, as defining as gender, occupation, and skill. Guess what? Diabetes IS as definiting as gender, occupation, hobby, and skil.
To say that I should not be called diabetic is to say that I should not have diabetes as a defining part of who I am, and in some ways it says that it should be shameful. It is not shameful. I am diabetic, like I am student, like I am brother, like I am teenager. I am person with diabetes to the same extent as I am person who is teenage. Awkwardly.

I am sorry if I offended you by my view. To be more clear, I am not ashamed my daughter has diabetes. I am ashamed of how the term diabetic is used, and what is thought by the general population when they hear it, or meant when they use it.
I am also sorry that you felt that you needed to make fun of how I feel about it. Julia also has migraines, should we make up a name to call her to describe that, too? Enough said, for me at least.

[allisa]

I think this thread is great...I love the idea of five facts....and badshoe...I LOVED yours !! I want to shout it from the rooftops that these 2 diseases hsould NOT have the same name, becuase that is the root of the problem....ADA had done a great job of publicity.....but we get rolled in.....maybe JDRF needs to be clearer in their publicity ? Not sure.....anyways...great thread !

[badshoe]

Oh may not have mentioned this:

Type 1 diabetes and type 2 diabetes are not the same thing.

[JanetM]

Here's one more:

For my child, food is the equivalent of medication. Of course, food is also enjoyment and nutition, but for a Type 1 Diabetic, food is also the only treatment for a low bg, so please don't tell my child "no snacks allowed"--she needs to have a source of carbohydrate nearby at all times.

PS: And thank you to those who spoke out so eloquently against the homophobic, and mis-educated view about HIV. My Gawd, get a grip . . . somewhere in cyberspace, I assure you there is a discussion support group for people with HIV who are making a list just like this one: 5 things that you want the world to know . . .

[madde]

I agree with all the posts.

I would like for everyone to know about diabetes is.

1. It takes away sooo much freedom
2. As a parent, it puts you into a state of "living in fear" of hypo's. (I don't think I ever really fully relax anymore.)
3. It is really hard.
4. Insulin is not a CURE, it is only a lifesaver
5. That NO CHILD or ADULT should have to live with this disease. It's not fair.

I hate the fact that diabetes came into our lives and totally took over. Every day is about bs numbers. We live according to what her bs is.

Can I go outside and play mommy? Sure, get your meter and check you bs.

Can I go to my friends house to play? Maybe, let's see how your bs is.

Can I have a snack? Yes, need to check you bs. etc.

Check, check, check. Correct, correct, correct. It takes over your thoughts, it consumes your every waking moment. And the thing is it has to. We can't take a break from it, that is not allowed. But, you have to remain positive, but that is hard sometimes when you are dealing with such a negative.

I REEEAAAALLLLYYYY HAAATTTTEEEE DDDDDIIIAAABBBEEETTTTESSS!!!!!!

[czardoust]

I would want people to know that its perfectly fine, 100% ok for my child to be invited to a birthday party, that D does NOT stop her from eating cake, ice cream, etc and it SHOULD not stop her from being with her friends on a special day.

[wendyc]

Cookie Monster is not going to get diabetes from eating too many cookies! Other factors play into it...

[Sarah Maddie's Mom]

every 60 second a person dies because of HIV. The difference is that HIV generally kills ~sinners and addicts

I beg to differ. HIV is a virus, it kills those infected. It knows no moral criteria. You comment is small minded and bigoted, IMO.

[OSUMom]

You can be any particular age and still get "juvenile" or Type 1 diabetes.

[Lee]

Ok everyone, I think Payam gets the point ,we all say things that come out wrong - cut him some slack...I am sure he didn't mean to offend anyone...right???? (I hope I'm right)

For me - a couple of other things:

Food is essential to life, health, well being, enjoyment, etc...it plays an essential role in everybodies lives.

But food can kill my child ~
But food can save my child ~
My world now revolves around food ~ every single morsel is examined, weighed, measured, read, pinched, poked, prodded, sniffed, micro analyzed before it can become the Essential of Life

If there were a natural disaster, war, anything ~ my child could quite possibly not survive due to lack of supplies and lifesaving medicine. This is my greatest fear, I cannot live without worrying about this at least a couple of times a day. Yet, I am one of the lucky ones because it is only a worry for me, it is a way of life for those in different areas of the world.

This worry is why improved medicine is great, improved care is great, improved lifestyles are great. However, my child still needs medicine to survive. Improvements are not enough ~ we NEED a cure!

[Sarah Maddie's Mom]

I disagree, Lee.
The comment regarding HIV was beyond the pale. I personally think the respose was quite subdued. Would we have let slide a similar comment about any other group? And I don't think we can assume that there are no HIV positive people here at the forum, nor can we asume that they didn't take offence at being called "sinners and addicts".

[Lee]

I disagree, Lee.
The comment regarding HIV was beyond the pale. I personally think the respose was quite subdued. Would we have let slide a similar comment about any other group? And I don't think we can assume that there are no HIV positive people here at the forum, nor can we asume that they didn't take offence at being called "sinners and addicts".

I agree with the assumptions and everything else you were saying. My problem is, he has been told numerous times that his statement was wrong, bad, horrible, etc I want to read this thread to read about this thread. Not to read about how offended people are by the statement.

Also, I think that when we get offended by what people say, we can start a brand spanking new post that complains about it. That way, I can choose to read and or participate. I REALLY want to read about the 5 things people say, not about an asinine comment made off the cuff.

[Kaylee's Mommy]

guys.. look at the date of this thread.. it was back at the beginning of this year..

[Lee]

guys.. look at the date of this thread.. it was back at the beginning of this year..

Thanks Kaylees Mom....

[shirley83006]

there is no cure
cannot be confused with type2 and cannot be controlled with diet
it is not contagious
kids are normal like anyone else
dealing with needles and poking everyday of your life
there are many more to list.