My fellow Type One's!

Type 1 and LADA
1

My name is Gabriella I am 16 years old and I am a high school student. I am interested in learning other Type One's points of view on the following! But first here is some background. I was diagnosed 9-26-97 at the age of 2. I also have some disabilities other than Type One Diabetes. I have dealt with incompetent people (teachers, students, uneducated people who assume all diabetes is caused by being overweight.) I am hoping to get your point of view on the following questions, I want to see how my views are similar/different from other Diabetics!

If you do not want to share your response publicly, please private message, or email me at beatingtype1@gmail.com

1. Are you afraid of letting your pump show, if so why
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
3. Do you test in class
4. Do you keep your pump on beep or vibrate?
5. Do you feel that showing off your pump is cool because it is different.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
7. Do other people comments on your pump bother you?
8. If you are/when you were in high school did other kids know about it? If so how.
9. Were you open to talking and educating people about it?
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
11. To you does it really matter if your site shows?
12. Do you ever think about how your life would be if you did not have Diabetes?

~Gabriella

2

1. Are you afraid of letting your pump show, if so why-- no

2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal yes, I tell anyone with whom I discuss it with how great it is

3. Do you test in class at work? yes again

4. Do you keep your pump on beep or vibr ate? Vibrate.
5. Do you feel that showing off your pump is cool because it is different. No. I do other stuff to show off!

6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? both
7. Do other people comments on your pump bother you? No, I will get up in anyone's face who complains about it.

8. If you are/when you were in high school did other kids know about it? If so how. I don't think they had pumps when I was in high school (1985?)
9. Were you open to talking and educating people about it? Yes
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? "I was running a little low..."

11. To you does it really matter if your site shows? No

12. Do you ever think about how your life would be if you did not have Diabetes? YES

3

1. Are you afraid of letting your pump show, if so why
Nope
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
It doesn't really matter to me.
3. Do you test in class
I test everywhere and anywhere.
4. Do you keep your pump on beep or vibrate?
beep
5. Do you feel that showing off your pump is cool because it is different.
Nope, I forget its there.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
Most days I'm okay with it, some days it really bothers me.
7. Do other people comments on your pump bother you?
Nope.
8. If you are/when you were in high school did other kids know about it? If so how.
I did not get diagnosed until after high school.
9. Were you open to talking and educating people about it?
I am
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
The only person who has seen me like this is my boyfriend, who understands without an explanation. So I don't know yet.
11. To you does it really matter if your site shows?
Depends on the situation. On a regular basis my site is not showing, but I would not be embarassed if someone got a peek at it. When I am going to the beach or pool I could care less if my site is showing.
12. Do you ever think about how your life would be if you did not have Diabetes?
Yes.

4

1. Are you afraid of letting your pump show, if so why? it doesn't matter to me whether it's showing or not
2. Do you let your pump show because you are "proud of it" or, whether it shows or not it does not matter to you? Is showing your pump a big deal? showing my pump is not a big deal, it opens up the opportunity to share with others.
3. Do you test in class? I test at work whenever I need to
4. Do you keep your pump on beep or vibrate? With the omnipod, I don't have a choice. It's always audible
5. Do you feel that showing off your pump is cool because it is different? No, but I do enjoy engaging with other pumpers because they see my pump!
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? I don't think I'll ever be "ok" with it. But I've learned and am still learning to adapt to it. I have had type 1 for 14 years now, and occassionally it will bother me, but I try to live as close to normal as I can.
7. Do other people comments on your pump bother you? When it's something like "Oh, your diabetes must be bad" or something like that, yes. But I try to take the opportunity to share with them that it actually makes diabetes a little bit easier to handle.
8. If you are/when you were in high school did other kids know about it? If so how. I didn't have a pump. But my friends and teachers all knew I had diabetes.
9. Were you open to talking and educating people about it? I was and still am. A lot of papers and speeches I did were about diabetes.
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? Fortunately I have only had a couple lows like that. Once I explained I was having a low blood sugar, they understood.
11. To you does it really matter if your site shows? No. If people can see it, they see it.
12. Do you ever think about how your life would be if you did not have Diabetes? Yes, but I try not to dwell on it too much. I have the life I have for a reason. No reason to try to change it.

5

1. Are you afraid of letting your pump show, if so why
I didn't want it to show for the first few years that I used it. In the past 6 months or so I've loosened up about it and don't care if it's showing.
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
It's not a big deal to me either way.
3. Do you test in class
I am not in classes in the traditional sense :) I teach kindergarten. I do not test in front of my five-year-olds. I do test in front of co-workers or in public places. I am going back to college next year to pursue a career change and will test anywhere/anytime on campus that I need to.
4. Do you keep your pump on beep or vibrate?
Vibrate
5. Do you feel that showing off your pump is cool because it is different.
No, I don't care either way if others even notice it.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
I'm ok with it. I've been diabetic almost 19.5 years.
7. Do other people comments on your pump bother you?
That really depends on what the comment is.....
8. If you are/when you were in high school did other kids know about it? If so how.
Some friends knew I had diabetes. But I didn't talk much about it. I gave myself my shots in the bathroom, so it was never really apparent.
9. Were you open to talking and educating people about it?
Not then. I am now!
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
I had horrible control in high school and never had lows like that at school.
11. To you does it really matter if your site shows?
Yes, I'd rather not deal with the stares.
12. Do you ever think about how your life would be if you did not have Diabetes?
No....I can't imagine life without it. This is what I know.

6

Thanks for replying! this really helps!

7

1. Are you afraid of letting your pump show, if so why -- N/A -- I use a vial and syringe
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal? -- Again, N/A, see above
3. Do you test in class? When I was in grad school a few years back, I rarely tested in class and when I did, I tended to hide the meter. Some shame/embarrassment, but too long a story for here.
4. Do you keep your pump on beep or vibrate? -- N/A
5. Do you feel that showing off your pump is cool because it is different. -- N/A
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? -- It depends on the day and what is going on. Most of the time, I am fine with my diabetes, but other times (holidays, for instance) I truly despise having diabetes.
7. Do other people comments on your pump bother you? -- N/A
8. If you are/when you were in high school did other kids know about it? If so how. -- I was 26 when I was diagnosed, so my HS years weren't an issue. However, I was in a PhD program at a top university for my area of study at that time. I had to let my professors know about the diagnosis and because so many of the professors were less-than supportive, I quickly became reluctant to discuss with others around me.
9. Were you open to talking and educating people about it? -- Once I left grad school, yes.
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? Like AcidRock, I simply say, "I need something to eat. NOW."
11. To you does it really matter if your site shows? -- N/A
12. Do you ever think about how your life would be if you did not have Diabetes? -- Often

8

1. Are you afraid of letting your pump show, if so why no not at all.
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal. Showing my pump is not a big deal to me at all. I don't really care if it shows or not.
3. Do you test in class I try not to just because it tends to disrupt whats going on. If i need to test, and i happen to be in class, i will.
4. Do you keep your pump on beep or vibrate? Beep.
5. Do you feel that showing off your pump is cool because it is different. Diabetes is part of who i am and so it my pump. Everybody is different so if it shows thats just fine with me.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?Obviously there are times that i wish i didn't have diabetes. Most of the time, however, it doesn't bother me.
7. Do other people comments on your pump bother you? it doesn't bother me at all. sometimes it will catch me a little off guard but it doesn't bother me. I will even show them my infusion site if they ask (as long as its not on my but lol)
8. If you are/when you were in high school did other kids know about it? If so how. I graduated high school 2 years ago. I went to boarding school so everyone pretty much knew everybody else's buiness. Everybody knew i was diabetic and it didn't seem to be a big deal
9. Were you open to talking and educating people about it?I have always been pretty open about it. I try to not talk about it with people who feel uncomfortable about it though.
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? I normally just tell them i wasn't feeling well. Its hard to explain what being low feels like to someone that has never felt it. If its someone i know really well or that has delt with diabetes things then i will just tell them that i was low.
11. To you does it really matter if your site shows?not at all.
12. Do you ever think about how your life would be if you did not have Diabetes?sometimes but its not something that i think about very often.

9

I'm letting my son answer theses questions and I'm typing for him. He's almost 16, diagnosed two years ago.

1. Are you afraid of letting your pump show, if so why
No, wear the omnipod/cgm sensor on my arms a lot
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
whether it shows or not it does not matter
3. Do you test in class
Yes
4. Do you keep your pump on beep or vibrate?
It does both
5. Do you feel that showing off your pump is cool because it is different.
I think the technology is cool-tubeless pump and cgm, if they want to check it out, that's ok.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
It stinks, it's bothersome, but I deal
7. Do other people comments on your pump bother you?
No, and I never got rude comments
8. If you are/when you were in high school did other kids know about it? If so how.
My classmates see my test, my friends see was I do at lunch
9. Were you open to talking and educating people about it?
Yes, I'll tell them a little bit. Have a type 1 classmate that we share diabetes management / stories
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
My teachers know, let me take care of myself and offer assistance. Friends know I can get shakly and need a fast carb. If I go unconscienous run for help/get my glucagon thats in the health office but also in my backpack.
11. To you does it really matter if your site shows?
Doesn't matter, shows often.
12. Do you ever think about how your life would be if you did not have Diabetes?
I remember what life was like without it, it's harder with it.

10

1. Are you afraid of letting your pump show, if so why
No not at all. It is now like one of my body parts that keeps me alive.

2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
I don't care if it shows are not. I wouldn't say I'm proud of it.

3. Do you test in class
I test where ever and when ever I need to.

4. Do you keep your pump on beep or vibrate?
Vibrate

5. Do you feel that showing off your pump is cool because it is different.
I don't really show it off but if someone wants to see it I don't mind.

6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
I hate having diabetes; But it is better than the alternitive.

7. Do other people comments on your pump bother you?
No not at all; it gives me a chance to educate.

8. If you are/when you were in high school did other kids know about it? If so how.
Didn't have D in high school.

9. Were you open to talking and educating people about it?
Yes

10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
Haven't had to deal with that yet.

11. To you does it really matter if your site shows?
Not really.

12. Do you ever think about how your life would be if you did not have Diabetes?
Life was much better without diabetes. I didn't get diagnosed until I was in my 40's. I wonder how it is for some one who has had to deal with it for there whole life.

Hope you get the answers your looking for.

11

1. Are you afraid of letting your pump show, if so why I don't use a pump but will take my shot anyplace I want, I dont care who sees
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal See 1
3. Do you test in class Yes and more so at work
4. Do you keep your pump on beep or vibrate? NA
5. Do you feel that showing off your pump is cool because it is different.NA
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? Most of the time I love it it is part of me
7. Do other people comments on your pump bother you? No pump but some peoples shot comments make me laugh
8. If you are/when you were in high school did other kids know about it? If so how. NA
9. Were you open to talking and educating people about it? Very open talk peoples ear off about diabetes
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? Sorry I am/was low I need to eat.
11. To you does it really matter if your site shows? NA
12. Do you ever think about how your life would be if you did not have Diabetes? Nope

12

1. Are you afraid of letting your pump show, if so why?
I fear that sunlight degrades my insulin in the cartridge through the window and makes it less effective by day 3, therefore I rarely wear it on the outside. No fear of public and sometimes might want to.
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal?
I am not proud of my pump I think of it as more of an extension of myself (a third arm maybe?). If people are willing to learn I am willing to show them my pump.
3. Do you test in class?
In HS I went to the nurses office or my locker during class to test. At work I test whenever I need to, except in a big, important meeting.
4. Do you keep your pump on beep or vibrate?
Vibrate
5. Do you feel that showing off your pump is cool because it is different.
Nope, its just a part of what I do.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
22.5 years of type 1 and I am as OK with D as I think I can be. Its what I am and have to do, but there are certainly ups and downs.
7. Do other people comments on your pump bother you?
No, except the less common, Uh, what are you Diabetic? comment gets a little under my skin.
8. If you are/when you were in high school did other kids know about it? If so how.
I was pretty shy in HS. I told some teachers/students and not others. Mostly because I didn't want to play 20 questions with 20 different people every day.
9. Were you open to talking and educating people about it?
If people are willing to learn/listen, then I am willing to talk/educate.
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
I ran too high in HS (1994-98) and didnt have many debilitating lows. I always had lifesavers in my backpack and would just eat them without anyone hassling me when I needed them. If anyone asked I would simply answer, that I was/am low and need sugar. That is usually sufficient but if they ask more I would let them know.
11. To you does it really matter if your site shows?
No.
12. Do you ever think about how your life would be if you did not have Diabetes?
Sometimes, but it seams like a fairytale at this point. I am what I am and I have to do the best that I can with what I have got.

13

First off, I don't have a pump but I think I can answer most of the questions in a similar way for MDI.

1. Are you afraid of letting your pump show, if so why
Yes and no. I usually don't but it actually doesn't matter if my pens lie around because to other people they look like, well, pens... so I don't mind the rare case somebody sees them anymore.

2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal
Pretty much the answer to Q1. No, I'm not proud of it. Why should I? But I came to the realization that people who don't know they are medical devices see my pens ans nothing else than pens, as in pens you write with.

3. Do you test in class
No. Didn't do it at school and so far have not done it at Uni.
I kind of did/do but only in my backpack.

6. How do you feel about your diabetes, are you "ok" with it or does it really bother you?
It bothers me. I always tried to not let it bother me but it does, and maybe more than it did at school.

7. Do other people comments on your pump bother you?
I don't remember a situation in which anybody has ever commented on my pens or anything diabetes management related. It probably depends very much on the comment. If it's a mean one, yes, then it would bother me. If it's one out of interest, I'd be ok with it.

8. If you are/when you were in high school did other kids know about it? If so how.
Yes and no. Some definitely did, others most definitely did not. See, I went to the same school from 5th grade on until graduation. So I was 10 when I started there, and my parents thought it to be a good idea to inform my class... I tend to disagree. But since I didn't stay with just those people for the rest of my school days, there may have been a lot of people who didn't know - I didn't tell anybody myself, as far as I remember. I had to ask for sugar/juice/money in PE shortly before graduation, though. Same with the teachers, some knew, some probably didn't but I'm less sure about them than my classmates.

9. Were you open to talking and educating people about it?
No. I think my biology teacher once asked me to do a project on it but I to declined with thanks. I was, and still am, very shy. I did, however, answer questions the few times I have been asked some. But never in front of an entire class.
If I need to inform/educate somebody now, I prefer to do that in private after fellow students have left.

10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers?
I didn't. It would have been better if I had done so, but again, I was very shy. It didn't do anything good to my marks, and I know that but I can't change the past. If this happens in an important situation now, I'll explain it how it is - that I am/was acting loke I am/was acting because I experienced a low blood sugar.

11. To you does it really matter if your site shows?
I don't like it if others see me injecting. Never did it openly while at school. Due to a lack of time, I did inject at my Uni's cafeteria... but I'm not saying that it did not matter to me.

12. Do you ever think about how your life would be if you did not have Diabetes?
I do and I know for sure that certain things would be different and I'd have an easier life.

14

1. Are you afraid of letting your pump show, if so why ABSOLUTELY NOT. All my friends and coworkers are aware, as I feel they should because if I have lows, so it is not a big deal
2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal I put it in a pocket, but have no problem pulling it out.
3. Do you test in class I am an adult educator. I carry my kit all the time and test when I feel I need to. I go below a desktop as some people freaked at blood, but I have let all know and they are cool with it.
4. Do you keep your pump on beep or vibrate? Always vibrate. Uses more battery, but is more controllable.
5. Do you feel that showing off your pump is cool because it is different. No. It is a necessity.
6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? OK, but I am almost to 50 years as a T1

7. Do other people comments on your pump bother you? No
8. If you are/when you were in high school did other kids know about it? If so how. Oh yea. I needed them. They were kinda stupid about diabetes, but the real friends saved me a few tines. Tell them!!
9. Were you open to talking and educating people about it?
10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? The nurse should do that and your parents should counsel. If not possible, lay it on the line.
11. To you does it really matter if your site shows? It doesn't, but I am getting old, so covering clothing....
12. Do you ever think about how your life would be if you did not have Diabetes? Sure, but who cares. I have it and will always, so what..

15

Interesting questions....

1. Are you afraid of letting your pump show, if so why - I'm not embarassed by my pump per se, but I don't often "let it show" at work. I guess I like to keep my condition from being the topic of discussion. My pump raises questions that I don't mind answering away from work, but at work, I prefer to be seen as just me, and not someone with a condition that requires any special attention.

2. Do you let your pump show because you are "proud of it" or, "whether it shows or not it does not matter to you?-Is showing your pump a big deal. Again, at work I have found it to be a big deal. But at all other times, I just don't think about it.

3. Do you test in class I'm not in class anymore, but at work I will generally skip out to check my BG or do whatever I need to do. Only because some people are totally grossed out by it and, again, I don't like my diabetes being the topic of discussion.

4. Do you keep your pump on beep or vibrate? I keep it on the audible mode (can I even put it on vibrate mode?)

5. Do you feel that showing off your pump is cool because it is different. No, but I do hope sometimes when it's visible that it will attract another person with T1 to talk with. Sometimes I hate it that I don't know someone else with T1!

6. How do you feel about your diabetes, are you "ok" with it or does it really bother you? I've grown to accept it. I don't like it, and I would pay a handsome sum of money to get rid of it, but I accept it. I've even grown to appreciate that some of my better traits (my attention to detail, organizational skills, determination, ability to persevere even if I don't feel well, my athletic capabilites) are the DIRECT result of living with T1. And lately I'm beginning to get the sneaking suspicion that I'm actually healthier than the average person because I have T1. Never thought I would say that!

7. Do other people comments on your pump bother you? Most people don't even notice it. Other than the TSA or other security folks, it's not something people generally comment on.

8. If you are/when you were in high school did other kids know about it? If so how. Yes, and I didn't like it.

9. Were you open to talking and educating people about it? I am now better about educating people on diabetes if they have questions about it. I have a lot of knowledge about the different kinds of diabetes, the causes, how they differ, etc. But sometimes I just don't want to talk about it. I have to think about this disease 24/7 to stay alive, and talking about it more can just be overwhelming at times.

10. When the kind of low you have when you are a real neanderthal (acting really weird, innapropriate) how did you explain that to you teachers/peers? This is a hard one. Thankfully, having the pump means my lows aren't as severe and I'm usually able to catch them before they make me really grumpy or disoriented. That said, I've had to apologize on more than one occassion. Most people are pretty understanding. Sometimes I send them on of Kerri's (sixuntilme) videos which do a great job of explaining what a low feels like.

11. To you does it really matter if your site shows? Yeah, I don't like people to see that.

12. Do you ever think about how your life would be if you did not have Diabetes? All the time.