To be offended, or not to be offended?

I was talking about my son’s 6 month anniversary of diagnosis being tomorrow at work, and how I was planning a special day for him. First someone asked me why I was celebrating my son being diagnosed. I explained I wasn’t celebrating his diagnosis, but his life and health and the way he takes ownership and faces his disease head on. Someone else asked me why I make such a big deal about diabetes because “a lot of people have diabetes and it’s really nothing, not like it’s cancer or something”. And yet someone else asked me if he was “one of those spoiled brats with a disability thing”. They went on to tell me that doing things like recognizing his disease by planning a special day would turn him into one of those overcompensated brats.

I realize that people that don’t deal with this daily like we do don’t get it, but… “is your child a spoiled brat?” Really??

I have decided to stop talking to the people I work with.

Anyone else run into stupidity like this?

What’s the stupidest question or statement you’ve ever gotten about your child’s diabetes?

Print out this article from the NY Times… and have them read it…
Stacey

November 23, 2009, 9:54 am
Thinking About Diabetes With Every Bite
By CATHERINE PRICE
When I look at food, I don’t see food. I see sugar — in the form of carbohydrates — plotted on a multidimensional graph with proteins and fat and serving sizes and sickness and exercise and times of day.

Catherine PriceI didn’t always do this. Before I received the diagnosis that I had Type 1 diabetes, I saw food as food, and ate it as such — simply, casually, with no real thought attached.

The winter of my senior year of college, after a bad cold and painful breakup, I began eating more — not to cope, but to feel full. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall with pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet.

I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. One afternoon I threw it all up, convinced I had food poisoning. My stomach eventually settled, but my mind did not. The world swirled. I couldn’t stand without stumbling. On Feb. 17, 2001, I entered the hospital, and since that day, food has never been the same.

To live with Type 1 diabetes means to be aware, constantly aware, of insulin — a hormone produced in the pancreas that unlocks your cells so they can use the energy in your food, which circulates in your blood as glucose. A healthy person’s pancreas pumps out insulin in exact, perfect doses, masterfully managing the level of available glucose so that it never rises too high, which could lead to complications, or too low, which could kill you on the spot.

My pancreas, however, doesn’t make insulin. It can’t. For reasons no one can fully explain, my own immune system killed off the cells that produce it. That’s what Type 1 diabetes is — an autoimmune disease in which your body turns against itself. It’s frequently confused with the more prevalent form of diabetes, known as Type 2, but the diseases are not the same. Unlike Type 2, Type 1 diabetes can’t be prevented or managed with diet, exercise or oral medications. Instead, it requires artificial insulin — through injections, not pills — to stay alive. Before insulin was discovered in 1922, Type 1 diabetes was a terminal disease.

Today, artificial insulin means that a Type 1 diagnosis is not a death sentence. But living with diabetes takes much more than simply giving yourself shots. It requires constant, unwavering attention to your meals, lifestyle and medication — and even the most conscientious person with diabetes will never achieve the balance that a healthy pancreas effortlessly maintains. If I take too much insulin, my blood sugar will drop too low; my body will sweat and tremble; I will become anxious, irritable and confused. If I don’t quickly eat something to give my body the glucose it needs — or, worse, if it’s the middle of the night and I am too deeply asleep to notice the warnings — I could lapse into seizures and unconsciousness and never wake up.

It would be easier to keep my blood sugar a little too high, to coast comfortably above the turbulence of tight control. But doing so would mean ignoring the destruction caused by high sugar levels — slower than a seizure, but devastating nonetheless: the capillaries in my eyes bursting from too much glucose, the tiny vessels in my kidneys overwhelmed by sweetness, the nerves in my feet losing their ability to feel.

Instead I calculate constantly, measuring my food’s potential effect on my blood against my desire to eat it, trying to walk a Goldilocks tightrope where my sugar is not too low, but also not too high. My blood sugar’s reaction to food depends on far more than the food itself. If I exercise before or after eating, it is different. If it’s the morning, it is different. If I have my period, it is different. If I am tired or stressed or sick, it is different.

From the outside, diabetes is invisible. Look closer, though, and my fingertips are calloused where I prick them to test my blood sugar 10, 12 times a day. A bulge in my pocket reveals my insulin pump, a machine connected to me by a tube that, in giving me insulin, keeps me alive; scars from its insertion sites pepper my hips. My pump means fewer injections, but it has no brain — I still decide how much insulin to take. Instead, it is a literal tether, its plastic stint in my side a reminder, as I sleep with it, exercise with it, and go to dinner with it tucked in my bra, that I have a disease, that there is something wrong. Diabetes’s subtlety is both a blessing and a curse, saving me from stares and pity but keeping the difficulty of the disease — and its severity — hidden as well.

I hate it, diabetes — wish I could take a vacation from it, eat a slice of bread without calculating carbohydrates or have dinner with friends without fear. But I can’t. So instead I try to flip things around, to use the challenges of diabetes as an inspiration to live as fully as I would if I didn’t have it — if not more so.

One of the best decisions I ever made was to participate in a clinical study for a new experimental drug as soon as I learned my diagnosis; I encourage everyone to do the same. As my endocrinologist, himself a Type 1 diabetic, explained to me, “We need just about every single newly diagnosed person to get involved in a trial. It’s the only way things won’t be the same in five years.” You can find a clinical trial for Type 1 through the Juvenile Diabetes Research Foundation, the National Institute of Diabetes and Digestive and Kidney Diseases, the Immune Tolerance Network or ClinicalTrials.gov.

I have also started writing for a diabetes Web site called A Sweet Life in hopes that, by sharing my own experiences with Type 1, I can help other people feel less alone. But there is plenty about my life that has nothing to do with having Type 1, like co-authoring a cookbook and writing a parody travel guide. My most recent non-diabetic adventure was to join a no-audition hip hop dance group.

Living with Type 1 is an exercise in measurements and judgments and willpower and constant self-restraint. For me, the most difficult part is accepting that I will never be perfect; I will always have bad days and, perhaps worse, there is no way for me to “win.” Like everyone with Type 1 diabetes, I will have to keep at it — every day, every hour, until we finally figure out a cure.

The best I can do in the meantime is to control my disease without allowing it to control me, and to not let the autoimmune attack on my pancreas develop into an emotional attack on myself.

And, of course, to dream of a day when I can once again think of food as food — simple, enjoyable, with no strings attached.

Catherine Price is an Oakland, Calif., freelance writer whose work has appeared in “The Best American Science Writing 2009,” Popular Science and The New York Times. She is the author of “101 Places Not to See Before You Die,” to be published in 2010 by Harper Paperbacks.

I was told that if I give him Apple Cider vinegar it will make him not need insulin! The person meant well but …OMG!

Once the Brownie Troop leader literally ripped a 'smore out of my daughter’s hands and screamed “You can’t have that!” even though I was standing right there with a needle-full of Novolog. To answer your question, Yes. It’s G-d damn insulting but you have a choice as to how much power you give the insults. People are insensitive, it’s true. But I tell myself it is based on ignorance and fear, instead of malice. I also believe in karma. So one day these people will get a wake-up call of their own. When faced with one of these ridiculous comments, simply ask people to elaborate: ‘What do you mean by spoiled brat?’, or what do you mean by ‘nothing?’. My experience is that they’ll quickly back off those remarks. Meanwhile, focus on the people who give you strength and support.
I am throwing a huge party for my daughter’s one-year anniversary next Sunday. I asked her how she’d like to mark the occasion and she wanted a party. Is that spoiled? I don’t think so. I think that is rewarding a kid for taking one of life’s lumps in stride, for turning lemons into lemonade. Good for her. We aren’t celebrating diabetes. We are celebrating our ability to cope, and we have earned it!
Also, I continuously remind the people around me (school, work, Brownie leaders) that if they have any questions about Type 1 diabetes versus Type 2, I am happy to answer them the best I can. The educational approach seems to disarm the rude ones and invite conversation from the sympathetic and caring ones. That’s how I sort 'em out. Enjoy your celebration!

I ignore comments like that! For my daughter’s one year anniversary last November, we went ALL OUT with a treat for the whole family to celebrate one year living with diabetes. We honored Abbie’s awesomeness in dealing with diabetes and everything her 3 siblings had done to support her. 364 days of the year, she’s a kid first and a diabetic second. But for that one day, we all recognized what it takes to stay healthy.

Yes people are insensitive and you wonder if they listen at all when you explain the diet, what to watch for etc…my son just passed his 1 yr anniversary, and we are so proud of him. I too try to “make up” for some of the things he missed out on - but also try to let him participate when he can. It amazes me how much school activities center around food - ie “cookie decorating” “icee day” using candy for science etc…but he has been so strong and even those he might particpate, he does not have to eat it… he would much rather pick up a small toy or go to the park than eat more stuff that is bad for him.

My biggest fight now is with his teacher. If we were so blessed with an awesome school nurse that understands, I think I would have brought my claws out by now if we weren’t I have explained to his teacher until I am red in the face why he needs snack, on a regular basis, daily. Twice this week she told him “no it is too close to lunch AND not fair to everyone else” thankfully he was not terribly low at his normal testing time (80’s) but he listened to me and told the nurse when she did it on Friday. The nurse was not happy has now made it a project of hers to further educate her (we were giggling about giving her a test!!) I just don’t now what else to do - he reminds her, I remind her, notes in the lunchbox, I have made books for her, etc…sometimes I also feel that she singles him out for interrupting if he needs a snack or to go test and gives him talleys for it - then takes his recess??? he is an honor student and while I know he is not an angel all the time, I think she should provide an alternate form of punishment - he (and all the other kids) need excercise!!
I agree the educational way is the best approach, but no matter how hard you try sometimes, they still don’t listen, or use their own knowledge they THINK they have and you have to put your foot down!! thanks for letting me vent and I think your celebration is awesome and hope you have a wonderful time. It is what we make of it not what it makes of us!

I would quit talking to them too- it is their loss not yours. Don’t need people who think or talk like that!! See my below post for some of the stupidity we are encountering with his teacher. Also - I have one co-worker who keeps telling me that she knew someone who had type 1, and it went away or she grew out of it - now I wish but come on… I try to explain to her that may be true for type 2 but she looks at me like I have three heads. I think to myself - whatever - I do on the other hand have many friends that do understand and are always there for us so we are very thankful for that! Hang in there!!

That’s what was implied on Oprah’s show last week. Yay Oprah.

Wow, Cathy, you work with some real gems! You’ve made me realize how truly lucky our family has been in our 3.5 month journey with diabetes - our school, family, friends and co-workers have all been very supportive. The greatest thing has been to see how supportive our daughter’s friends have been of her. They stood up for her when a substitute teacher wouldn’t let her leave the classroom to visit the nurse’s office for a BG test. And guess what? The substitute teacher’s 14 year old son has type 1. Of course, she immediately let her leave the classroom as soon as she understood why she needed to be excused.

I suggest that your co-workers need some education of the type your son’s disease has given him. How about some glucose tests and saline injections? Let those folks who have been so insensitive see what it is like to walk a mere yard in his shoes go first!

Celebrate his life, courage, perseverance and a year of incredible learning. After all, what a group of narrow minded, insensitive fools think shouldn’t stop you our your family from feeling good about all that he (and you) has accomplished.

i i have one of those “Brats”---- and it breaks my heart to know that you are not getting the support you need–We have just started supporting local diabetes walks–pls contacxt me

saline shots --AMEN!!!\

Cathy,

Continue to celebrate your son and please do not let other’s judgements or their less of self worth rub off on him or affect that.

Have a real good time with your son.

Maxie Atkins

I have mentioned it to the people I worked with. They consider even Type 2 to be extremely serious (a lot of them have relatives with Type 2). They know getting D as a child could lead to complications earlier. Main problem I have with them understanding is they think the diet should be similar to those with Type 2 so I was forced to explain in detail. A lot of them do not believe me when I say she can eat a certain item (they either question me or just look very doubtful). I then explain that everything they eat needs to be examined… everything. They do understand that. The insulin injections (or constant adjustments on the pump), the fingersticks…factoring in exercise… They would not understand the entire day to day management, no. Nor would they believe it (they would think I am overreacting and being a hypochondriac). I would not hesitate to put the coworker who made such an insensitive comment right in her place and I would spare her no details. I would tell her that any child who has to take ten fingersticks a day and in addition four to five shots a day deserves some acknowledgement of the great lengths they have to go through in order to keep healthy, that your child has to walk a tightrope every day in order to do it. And that no, your son is not a “spoiled brat”; rather, it is she who is an insensitive cretin.

My son wants to celebrate today. It is his 100 days since diagnosis. I say we are celebrating life!!!

Ask her if it would be “fair to everyone else” to watch your son be taken to the hospital after falling unconscious in the play yard due to a life-threatening low blood sugar. Ask her how the other kids would feel about HER if she allowed that (or caused it) to happen with her refusal to let him have his snack. This is serious stuff and she’s being childish, but I think you need more than the school nurse’s help with this - call the school superintendent and lodge a complaint, and if necessary get the ADA involved. This teacher is surely violating your son’s 504 plan with this behavior. Does she realize that his diabetes plan is mandated by federal law? That by refusing to conform to it, she is making herself and the school (her employer) liable for any issues with your son’s health? She may need that bit of information in order to “get it”, and I for one wouldn’t hesitate for a minute to bring in the “big guns” if that’s what’s required to insert a Clue into this woman’s head.

oooooh now I’m all steamed on your behalf.

Eric was diagnosed on his dad’s birthday, a day after we euthanized our prize filly because of a freak accident. It’s hard to celebrate that day because of the memories associated… but I always mark it internally with gratitude, because you know, if I had to lose one of my “babies”, better that it be the filly than my darling boy. I’ll always be grateful that of the two, he was the one who was spared. He and his brother are the lights of my life and I thank God every day that I get to keep them both!

Cathy,

It sounds like a few of your co-workers are rather insensitive.

Probably the stupidest question I was ever asked was “has David grown out of his diabetes yet”? How does one respond to that in just a few sentences?

When David was in primary school I took great exception to the jump rope for heart campaign flyer. The flyer made an abrupt reference to inactivity as being the cause of diabetes. I remember feeling annoyed to the point that I felt like writing a letter of complaint. In the end, I let it go as I figured that not one single person in David’s class would possibly think that his diabetes was caused by any sort of lack of activity.

I hope that you and your son really enjoy your special day.
Cheryl

Here’s how we ended up celebrating. He wanted Baskin Robins…he was in the 170’s already so I didn’t feel good about that…he love video games and hasn’t had a new one in a while. So I said how about a new game. He was surprised cuz that is way more $ than ice cream! He was like…“Yeah…can we go now!” I told him we would celebrate every 100 days. He has an Itouch…there is an Ap that does the counting for you. That is how he knew today was day 100,

I appreciate all of your input. It is comforting to know I’m not the only one out here.

We went to a place called Amazing Jake’s. We had a blast. I took a picture of John eating a cupcake and emailed it to the family. I got a response from my sister in law asking me if I knew how dangerous that was. I explained to her that it was not dangerous at all, just a dose of insulin. She went on to explain to me about “insulin toxicity” and how I was recklessly killing my son. I tried to explain, but to no avail. I gave up.

Now if THAT doesn’t beat all!!!

We did the School Walk for Diabetes. They really focused on education about diabetes prevention. So after that the entire school thought John was diabetic because he ate too much candy and didn’t get enough exercise. Sometimes it’s hard to feel like we’re gaining.

But as long as John knows that he didn’t do anything wrong to get this, and the rest of the family knows, we just aren’t going to worry about what society thinks anymore. We’ll educate those who want educated, and write everyone else off. It’s just so hard to not be able to talk to the people around you about it. Ya know?

Cathy–am sending you a hi 5 --your SIL has no idea what she is talking about–and in my opinion --should “SHUT-UP”–sorry for my feelings but I have had enough too! People who don’ t live this life have NO idea what they are talking about.