Speckled Fingertip Friends

A few months ago, I was sitting in my sociology class' review session (we had a big midterm exam the next day) and all of a sudden I heard the familiar sounds of a zipper, a popping vial, and a needle poke.   The girl that was sitting right next to me was checking her blood sugar.  

I go to UW-Madison, where there are over 40,000 students.  Since I've been trying for over a YEAR to start a student organization advocacy group on campus, it was incredibly exciting to see someone else going through the same things I go through on a daily basis.  My cheeks even got flushed and I felt really nervous, from being so excited.  I didn't ask her about joining my advocacy group (which I wish I should've done, now), but shortly after she tested, I whipped out my checker and repeated  the zip-pop-click that has become so familiar.  I secretly hoped she'd notice and perhaps say something, or even smile at me, but she didn't.   

More recently, I have been trying to connect with my diabetic peers through facebook group invitations, a website called collegediabetesnetwork.com, and a mass email to my anatomy class.  I haven't had much success in drawing diabetic members with facebook or collegediabetesnetwork, but I actually received a response to the mass email I sent (the email contained a video pertaining to world diabetes day) from a diabetic girl, saying "This is such a great video! I was diagnosed when I was 10."  You can imagine how excited I was, having elicited a response from a 500 student class size..I figured SOMEBODY else HAD to be diabetic.  I responded quickly, telling her about my group (in a non-threatening and enthusiastic way), to which I received no response.  I'm starting to think that even the diabetics that I DO manage to find don't have as much passion for advocacy or interest in diabetic news as I do.  

Has anyone else felt like this?  

I am running out of ideas to connect with other diabetics face to face.  I am so happy I found juvenation and collegediabetesnetwork, but I want diabetic confidants; classmates, friends.  

Wish you luck. I myself have pretty much only found Club 1's at health fairs and events. Also for me most I meet have been 1's longer than me and so much younger. LOL

Similar thing happened to me too!

I was in a lecture course of about 200 students, and a boy sits next to me, I hear him testing so I look over and he is! I was so excited because I had just been diagnosed a couple months before.  Being the nosey person I am I just flat out said, "You have type 1 diabetes?" and he reluctantly says, "yeah..." and I was like "me too!"  Then I noticed his meter said 40 and he ran out of the room and returned with a coke 5 minutes later.  He didn't say another word to me either.   Oops. 

 

Yeah, its tough when you meet someone else with T1 and they dont want to talk about it.  I think that we should stick together and support each other, and I wish those people would open up and realize that they could have someone else to talk to who understands!  But everyone handles it differently, and It could take many years for someone to open up.  I agree I wish there was a way to meet other T1's face to face, and have thought to myself: why isnt there more support groups etc for young people with diabetes? 

Hey it's not like you are asking them to dance or go on a date! What's the worst that could happen?

I don't have any brilliant ideas, but I wanted to say I know exactly how you feel.  Every time in school I heard of someone with diabetes I got geeky excited because I thought "FINALLY!", but never found anyone with the same kind of passion about diabetes or advocacy.

To this day I feel like the overbearing guy because I love meeting others with diabetes.  I don't have a problem asking people about it.  If I see someone with a pump/pens then I'll do a "hey! i like your style!" while flashing my own to see if it transitions into convo.  I figure there's no harm in asking, and just maybe you'll get the person involved in something that might totally change their mindset or treatment of diabetes.

The only idea I have which we tried on my campus is getting the local JDRF chapter or diabetes advocacy group in the area to host a free testing event or something of the like and see if anyone pops out of the woodwork.

The MinnDakota Chapter of JDRF has an outreach group called AWTO (Adults with Type One) that meets every other month. The group is for AWTO's and their "herewiths" ... (My name is Matt and I am here with my wife Christine, who has T1). My husband and another volunteer co-chair the group. The co-chairs line up speakers for each of the meetings and the JDRF office puts a notice out in their publications to let people know when/where we are meeting. When new folks join the meetings we ask if they want to be added to the distribution list so they also receive an email notice about the meetings, who is speaking, can RSVP etc.

When the group originally started we tried to have a speaker one meeting and then a social outing the next but the social outings didn't pan out as much so we just stick to speaker meetings and socializing now. Every meeting someone learns something new from each other and we all feel welcome and understood. Friendships have formed and good information has been shared.

Speakers range from JDRF Volunteers discussing research update to community medical staff talking about the basics of carb counting. We recently had that founder of Spring Point Project (www.springpoint.com) share how it all started. Last month Scott Johnson (http://www.diabetesdaily.com/johnson/) share information about online communities just like this one.

We started with just a handful of people getting together at a local restaurant. We now have about 60 people on the distribution list and 20-25 are able to join each meeting.  If you are in the area, check us out! If not, maybe working with your local chapter you could start a similar group.

 

Spring Point Project (www.springpoint.com)

Whoops! This should be http://www.springpointproject.org/

Sorry about that!

I also attend a very large university, 30,000 students, and I have yet to see anyone test their sugar, pump it up, inject, drink 5 "Juicy Juice" boxes in 30 seconds because their sugar is ridiculously low, you know, normal T1D stuff, even though I KNOW there are some others out there.  One of my professors is T2D, but he didn't tell me much when I asked him one day.

I do attend a small T1D support group (called "D-Link," hence my name), run by some medical students of my university (which I plan to run in a few years!) so I do meet a few other kids my age, but most of them live too far away to connect with often, other than at meetings, or are still "too young/not my type."   For the number of people I KNOW are in my area with T1, the meetings are rather small.  I feel as though people in my area just don't like to talk about it...

Whenever I attend fundraisers/events for JDRF, ADA I try and talk to as many people as I can, because it is really nice to know you are not the only one out there, dealing with this stuff everyday.  Of course, I also work at diabetes summer camp, so at least for a few weeks of the year I can get some good conversation in with peers.

With all this in mind, I am infinitely thankful to have "Juvenation" here whenever I need it.

[quote user="Ideen"]

I don't have any brilliant ideas, but I wanted to say I know exactly how you feel.  Every time in school I heard of someone with diabetes I got geeky excited because I thought "FINALLY!", but never found anyone with the same kind of passion about diabetes or advocacy.

To this day I feel like the overbearing guy because I love meeting others with diabetes.  I don't have a problem asking people about it.  If I see someone with a pump/pens then I'll do a "hey! i like your style!" while flashing my own to see if it transitions into convo.  I figure there's no harm in asking, and just maybe you'll get the person involved in something that might totally change their mindset or treatment of diabetes.

[/quote]

I laughed at this.  But only cause I am the same way.  I saw a girl a few years back shopping at the store I worked at with a pump site on her upper arm--at the time I was on MDI and was so excited to see someone that had a similar fight.  I was drawn to her like a moth to a flame and asked "How do you like the pump? I'm considering one for myself." She looked at me like I was certifiable and just said 'it's fine' and walked away.  I haven't met any other t1's other than the doctor I saw with my second pregnancy.  I would love to meet someone my age that 'gets it' because they've got it.   When I went to the JDRF walk last month, my husband thought I was flirting with the Omnipod guy...I told him "he's t1 too, he understands'.  I'm afraid I'll never have a t1 buddy other than you all here on Juvenation.

 "I'll do a "hey! i like your style!" while flashing my own to see if it transitions into convo."

I actually did this exact thing when I was in Texas doing a Habitat for Humanity project..I went up to a girl who had a pink pump and was like "Your pump is so cute!!" and she was like "Oh thanks," then walked away.  I can totally understand newly diagnosed adolescents not being keen on opening up about it right away, but it's frustrating for those of us who enjoy talking/sharing about our experiences. 

What do you mean "free testing event?" and did anybody come to your campus meeting?

Hayley

I had a similar situation at school in an art lecture, except I was the low one, and was more talkative, haha. I actually noticed a girl in my class wearing a pump, but I was always too nervous to talk to her:/  But one day in class I checked and I was like 56 and didn't have anything on me and there are no vending machines in the building (to top it off, it was mid-december in Wisconsin, and it was dark out, haha) so I went up to her (meanwhile my professor was lecturing our large class about Impressionism) and was just like "Do you have diabetes?"  and she was like, "Yeah..." and I said, "Do you have any juice or anything? I'm low and don't having anything with me :( " and she was like, "No..sorry.. (she didn't have cash, either)" so she actually ran across the street in knee-high snow and got me a soda.  I still felt really bad and actually paid her back for the soda a few days later, but she must have known exactly how I felt, which was reassuring. <3

[quote user="Hayley Schreiter"]

 "I'll do a "hey! i like your style!" while flashing my own to see if it transitions into convo."

I actually did this exact thing when I was in Texas doing a Habitat for Humanity project..I went up to a girl who had a pink pump and was like "Your pump is so cute!!" and she was like "Oh thanks," then walked away.  I can totally understand newly diagnosed adolescents not being keen on opening up about it right away, but it's frustrating for those of us who enjoy talking/sharing about our experiences. 

What do you mean "free testing event?" and did anybody come to your campus meeting?

Hayley

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When I approach people about their pump or whatever I always make sure to take mine out at the same time (in a not awkward way haha) to take some of the focus off them and make it more communal.  I don't think people like the pressure of talking about themselves, especially when it's something that can be viewed negatively like diabetes, so I try to make it more about "hey, look what WE have in common" instead of "hey, look at YOUR pump!  YOU have diabetes!"

Some people will always brush you off...and it's their loss.

Free testing event...I meant like setting a table up inside the union or high-traffic building with a nurse/CDE/whoever with a few meters and pokers so you can help people test their blood sugars for free...throw in some literature and quick info sessions with the CDE if need be.  We did it 2-3 times at my school and each time we'd have some people with diabetes show up and it was perfect way to get them the info about local groups like your on-campus D group. 

Never had any on-campus clubs meetings or anything, but we did recruit some people to get involved in our summer camp.

That's a really great idea!! :) You didn't discover anybody who might have diabetes, right?  I'd feel kind of terrible if someone randomly walked up and was like 300..  I will have to see if my union would help facilitate something like this.  It actually might be a better idea to have on-site testing available at the next student organization fair.   

Thanks for the good idea!

Thats so neat!  I go to ASU (60,000 +) so finding people with the D is hard. I think I only know 1 other person. 

It seems many of us have the same problem.  I would love to know people in person that have D, but many strangers don't like to open up about it.  I remember when I was in college, a friend of mine told me that there was another person in our year who had D also.  I knew him, but not very well.  He was in one of my classes, so after class one day, I went up to him and just asked him if he had diabetes.  He kind of stared at me for a minute, but then said yes when I explained that I did too.  I got excited and tried to talk to him about it, but he was clearly uncomfortable.  Maybe it was because the question came out of left field. 

Just this past summer, I had a family reunion where I met an aunt and uncle, and lots of cousins and second cousins I didn't know before.  My mom told me beforehand that she found out that one of my second cousins has D.  I thought "finally, someone who can relate to me on that level, and in my family too!".  I went up to him, introduced myself, and then asked him about his D...  he answered one question about it and then turned around and started talking to someone else.  I understand being self conscious about it.  But with someone else who knows exactly what you're going through?  That I don't understand.

The only other experience that sticks out in my mind was also this past summer.  I was laid off of my job, so had some time to kill.  I took a few classes at the local community college.  I took a nutrition class because I thought it would be interesting as well as useful.  The instructor was type 1.  He was really open about it, showed everyone his pump, and continually made jokes about it.  He was more than a little overweight, and always blamed that on his pump.  He said things like he had won the "lottery from hell" in getting type 1, and would joke about his dying from various complications.  Everything he said relating to D was negative.  Despite this, I went up to him after class and showed him my pump.  The first thing he said was "how do you stay so skinny??"  Then he started referring to both of us and the "lottery from hell" during class, which was a bit of an embarrassment for me, and made me feel bad about myself.  I decided this guy was toxic to be around, and did not attempt to talk to him about D anymore. 

Sigh.  Yay for Juvenation!  :-)

[quote user="Hayley Schreiter"]

That's a really great idea!! :) You didn't discover anybody who might have diabetes, right?  I'd feel kind of terrible if someone randomly walked up and was like 300..  I will have to see if my union would help facilitate something like this.  It actually might be a better idea to have on-site testing available at the next student organization fair.   

Thanks for the good idea!

[/quote]

Yeah, we actually did find 2-3 people who had high blood sugars.  One kid had a number in the mid-200's and he flipped out and hurried out the building in obvious distress.  He ended up coming back in like 20 mins to get some follow-up info, which is awesome.

I felt bad too, but I always think why feel bad when this kid could go months/years with high blood sugars and have no idea, rather than letting him know right now and getting him on track for a healthy life.

We had each person fill out this survey about their medical history, family history, and their lifestyle habits and got a good idea going into the finger stick of whether someone might have a higher number.  If they were high we'd tell them what that means, and if they were normal then we'd just discuss the risk factors they have and explain why it's important to get checked periodically.

"The first thing he said was "how do you stay so skinny??"  

If he seriously is blaming his weight solely on diabetes (TYPE 1!!) he must not be very well educated..?  If Halle Berry can be in kickass shape (AND after having kids), then I don't see why anybody else would blame weight on diabetes.  I'm sorry you had such a weird professor..

Yeah I hate when people blame their own faults on diabetes and use it as a bullshit cop out excuse.  It really frustrates me.  I hate having to work against the stigma these people are spreading about diabetes.

"Pump" does not equal "Unable to regulate your eating habits".  That's on you, brother.

Well, yes.  I forgot to mention in my previous post that the instructor came in almost every class with a bag from Chick Fil-a.  When he asked me how I stayed skinny, I had to bite my tongue to not make a sarcastic comment about his apparent eating habits.