Thursday, January 1, 2009

Diabetes Etiquette & Rant (Watch out!)

We're only 5 1/2 months into Kacey's diagnosis and I've not really had too many confrontations about her diabetes with anyone. I try my best to educate those around me that are ignorant to Type 1 and how it differs tremendously from Type 2. I try my best to keep my cool while inside I'm ready to explode because some people just don't understand how difficult some days can be. Diabetes doesn't give you a break. It's always there. It never takes a vacation. I never get to just relax (even though I really try to) I still constantly worry. As a Mommy, thats my job! I do my worrying without many seeing it. I never let Kacey know that it frustrates me when we can't get the numbers in control. I never let her see me silently cry and wish this disease would go away. When I hear people say thing like, "Well it could be worse! She could have cancer or something worse.", I wanna scream at them! Some people don't think diabetes is a big deal....IT IS! No she's not dying and she doesn't "look" sick...but if I wasn't the type of Mommy to stay in control of her diabetes then she WOULD be dying and she WOULD look sick! Without her insulin, she'd die in a few days! That's one freaking scary thought if you ask me! It just makes me so mad that people could compare this disease to diseases they think are "much worse" when in fact this D-Monster is a horrible disease that will NEVER go away! So yes...its just as worse as something like cancer!

Which brings me to my Diabetes Etiquette. I've seen this posted on several blogs that I keep up with and I figure since it directly affects what I'm feeling right now then it was my turn to post it! My job as Kacey's Mommy is to educate those around me that are ignorant to diabetes and to the "myths" about this disease. People don't understand the effort it takes to keep your child's blood sugars stable, the frustration you feel when you don't get the numbers you hope for and the emotion it takes on your entire being.

Number 1: DON'T offer unsolicited advice about my eating or otheraspects of diabetes.You may mean well, but giving advice about someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.

Number 2: DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when, and how much I eat, while also factoring in exercise,medication, stress, blood sugar monitoring, and so much more – each and every day.

Number 3: DON’T tell me horror stories about your grandmother orother people with diabetes you have heard about. Diabetes is scary enough and stories like these are not reassuring! Besides, we now know that with good management, odds are good you can live a long, healthy, and happy life with diabetes.

Number 4: DO offer to join me in making healthy lifestyle changes. Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you canbe helpful. After all, healthy lifestyle changes can benefit everyone!

Number 5: DON’T look so horrified when I check my blood sugars or give myself an injection. It is not a lot of fun for me either. Checking blood sugars and taking medications are things I must do to manage diabetes well. If I have to hide while I do so, it makes it much harder for me!

Number 6: DO ask how you might be helpful. If you want to be supportive, there may be lots of little things I would probablyappreciate your help with. However, what I really need may be very different than what you think I need, so please ask first.

Number 7: DON’T offer thoughtless 10 reassurances. When you first learn about my diabetes, you may want to reassure me by saying things like, “Hey it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.

Number 8: DO be supportive of my efforts for self-care. Help me set up an environment for success by supporting healthy food choices. Please honor my decision to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.

Number 9: DON’T peek at or comment on my blood glucose numbers without asking me first. These numbers are private unless I chooseto share them. It is normal to have numbers that are sometimes too low or too high. Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.

Number 10: DO offer your love and encouragement. As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.

Behavioral Diabetes Institute

Ok...I don't intend for this to be hurtful to anyone but as a parent you must know that we become "protectors" of our children. We work very hard to manage this disease and we don't need someone downgrading it by saying "It could be worse...she could have cancer." You're right...it could of been cancer...but this IS something just as bad...it's a progressive disease like cancer and it's certainly just as life threatening! Every single day I wake up and pray to God before I get out of bed that he watched over my baby and didn't take her from me. As I tiptoe to Kacey's room and place my hand on her chest to make sure she's breathing, I check her blood sugar while she's still sleeping peacefully and I pray for a "safe" number to show on that screen. It IS a scary disease and because I can't feel what her body is feeling that makes it even scarier!

**edit**
Furthermore, I was told today by a blogging mother ..." But many of our kids who have Down syndrome, deal with much more serious life threatening issues than diabetes, and there is not always a remedy such as insulin."

Well in response to that....cancer could be managed with taking the mass out and doing chemo/radiation and the person can be cancer-free... there are other serious life threatening illnesses that can be cured...but....

Until a CURE is found my child will NEVER be diabetes-free!!!!!!!!!

OK...I think I've said enough...probably too much...but after all, this is MY blog...MY place to vent my feelings...and I'm VERY thankful to have the support of every Type 1 and Parent of a Type 1 out there because they KNOW this exact pain and frustration I'm feeling! I love you all :)

5 comments:

The Turner's said...

Jill, THANK YOU for your words and I'm right with, at this very moment, sharing in your frustration and anger. Everything you said, EVERYTHING, is spot on and defines our daily battles. Diabetes affects the family in more ways than can be counted and it is so frustrating to hear that we should be grateful(UGH) that they don't have something worse.

I go through the same thing every single morning when I go wake up Nikki - you brought tears to my eyes. Thank GOD our girls do have parents who understand how serious this disease is - they need us to care for both their health and their emotional well being.

You are AWESOME and I thank God for your friendship!!!

Penny said...

Great post. I've felt your frustration too.

My dad was diagnosed with cancer in September. He underwent radiation and chemo and was declared cancer-free on December 23. I long for the day when my son will be declared diabetes-free. (I am by no means belittling cancer. My dad went through a very hard time battling it and I know many battle it only to lose, as some do with diabetes.)

((((big hug))))

Jill said...

Sheri~ Love ya bunches!

Penny~ It's very frustrating :( Especially when you see someone compare this disease to something like cancer. Thats WONDERFUL news about your Dad :) As a parent, you know the struggles we go through on a daily basis and when someone comes along and says "Its not as serious as cancer." it just makes you wanna scream because this IS something as serious and our kids can take a turn for the worse if they didnt have such strong Mommys like us :) ***HUGS***

freediabetesinfo said...

very nice tips

Cara said...

My 19 year old neice has cancer. Hodgkin's Lymphoma. She's been taking treatments for over a year now. She will never have children. We are praying for a safe recovery.
And you CAN'T compare the two. Both are life threatening, but there are where the similarities end. Treatments are different, complications are different, and the chance of "recovery" is different.
And it's okay to rant! :D We listen. And we understand.