« Spam I Am. | Main | Fun Time With SEO. »

Twenty Nine.

"Are you ..."The bond of diabetes between strangers.

"Yes.  Hi!  Are you ..."

"I am!"

When people who have never met before, yet know one another from the blogosphere, suddenly collide in person, it's always a fun mix of awkward, comfortable, and excited.  And last night I had the wonderful opportunity to have dinner with Karen from Bitter-Sweet Diabetes, R (who I have met several times before), and a woman I will call MW (for "MathWhiz" because she is good with numbers and I am absolutely not).

I've mentioned it before, but the diabetes connection is an instant and easy discussion, helping people who otherwise may have nothing in common to talk freely and comfortably about something that is a huge part of their lives.  Karen, R, MW, and I had trouble ordering our dinner because we were so busy chatting that we barely cracked open the menus.

What was really interesting to me was that MW was 29 years old, like me.  But unlike me, she was diagnosed 6 months ago.  I couldn't stop thinking about that.  R and Karen, also diagnosed as children, have spent most of their lives living with diabetes and for the three of us, life has always included diabetes management.  For MW, diabetes and all its bits and pieces were new to her life.  Life before diabetes for me is something I can barely remember, and it was all I could to do keep myself from quizzing her:  "How do you feel now that you have diabetes?  Do you feel like everything is different?  Do you feel like your life is completely restructured?  Do you remember sometimes that you didn't always have to do this stuff?"  I had to exercise restraint and keep myself from asking all the questions that were floating around in my head.

Diagnosed as a kid, this is just the way things have always been.  Soccer games always started with a glucose check, bedtime always involves a glass of water and a bottle of juice, and now, each skirt hopefully comes with a small, conveniently placed pocket.  For people who were diagnosed as adults, I can't imagine how their lives have changed.  Some people will say that being diagnosed as a kid is easier because you grow up with this disease and it becomes your "normal" without much effort.  Others say that an adult diagnosis is easier because you have decades without the disease, thus maybe lowering changes of complications.  From my perspective, I can't even wrap my head around an adult diagnosis.  I only know what I know.  But I am always eager to learn from others.

We sat at dinner long past when the chairs were put up at the other tables and past when the waitstaff was sitting, watching the football game at the bar.  We compared pumps, weighed out the pros and cons of different CGM systems, and when a quiet beep sounded, we all looked quizzically to see which one of us had "gone off."  The diabetes bond was enough to bring us to the table, but it was the company of kind people and easy conversation that kept us there.

Comments

That is so cool.

I had a T1 friend in college and we used to play Dance Dance Revolution together in my apartment until we got so low we'd have to break out the juice, haha. I miss having a friend close by with the big D!

Great post about a great night!!! It was awesome to get together and "compare notes" . . . and yes, to pump MW for her perspective on being diagnoses as an adult. (hahahaha, pump, get it) Imagine how long we would have stayed if they hadn't started turning off the lights on us. LOL Thanks to all three of you for a fun evening - and I hope we can do it again soon.

I am a newly diagnosed Type 1 Diabetic(6 months) I spent too much time wondering where & how I 'caught' diabetes.

After that unproductive time I settled into trying to be patient with myself as I find a structured rhythm to what was a care-free dance.

I am MOST AMAZED at is the visible impact stress has on me.
I am MOST THANKFUL for is going to the Joslin Clinic in Boston and realize for the first time in my life what quality health care is like.
I am MOST SURPRISED by is my own previous ignorance and just how many people have diabetes.

Ohhhh fun!

I know for us, being parents of a T1 child, we thought it would be difficult to carry on a conversation with other parents...but recently we had the opportunity to meet many parents with T1 children at a Diabetes Carnival and we ended up staying for 3 hours because we found it hard to end the conversations! All the questions we had were answered by parents who were going through or had gone through what we were and it was so easy to make friends!

It's great to have friends that really do KNOW how you're feeling!

-Jill

Interesting...comparing the differences of age at diagnosis. I was diagnosed in 2005 as type 1 and I was 48 years old. The changes in my life have been drastic.

As you know, I was one of those 'later in life' folks. I can remember my childhood, soccer and specific events like birthday parties that didn't include diabetes. However, when I think about day to day life, I cannot remember life before diabetes.

Odd right?

I was diagnosed as Type 1 three months ago at 31 years old. It was hard but I accepted (well, as much as anyone can accept this diagnosis) it because I finally feel better. You don’t realize how bad you feel until you feel good.
I can’t say being diagnosed as an adult is any better than being diagnosed as a child. I am so grateful that I could run and play as a child, hang out with my friends as an adolescent and drink as a college student without worry about diabetes. On the flip side, I’ve had 31 years to get set in my ways and make a life that got thrown for a loop by this diagnosis. Either way, I’m just trying to learn how to stay the healthiest I can in order to have a long healthy life, hopefully with some little ones running around one day :).
Kerri, thanks so much for blogging about everything! You have no idea how much your blog has helped me to realize that this disease is not going to limit anything that I want to do.

As a 23 year old when I was diagnosed, I remember it all. Sometimes I feel incredibly lucky for those 23 years, and sometimes I wish that I had been a little younger, so my parents had been the ones to navigate the diagnosis, and help me get started with it all.

Any way you slice it, diabetes is no fun.

i'm glad i was diagnosed as a kid, because it's really not a big deal to me, i just don't buy the garbage food, i know my body and what it needs. and i had my mom do all my shots for the first two years and she learned everything for me.

but at the same time, it would have been nice to have a normal childhood. halloween's coming up....i would have liked, i think, to have that experience of bringing home a pillowcase full of candy and pigging out on the living room floor until my belly ached!

I got diagnosed when I was 38 but am type 1 and wondered how long I have really had it ? anyway I have two good friends that have the big d and the rest of them dont have it . but yes it is good friends that lead to wonderfull conversations about diabetic related items that no one else in the room could relate to unless they are one .

As an adult-onset T1 and parent of a little one with T1, I think I can offer a unique perspective here. The difference is that adults are a little more intellectually-prepared for a diagnosis, and we understand why we can't have that plate full of donuts like everyone else is.

Emma was so young when she was diagnosed (9 months) that she will never know any differently, and frankly I don't understand those that say that is beneficial at all. It really means that the chances of complications for her will begin when she is a teenager. A teenager. Think about that one for a minute. Retinal bleeds. Heart and kidney issues. As a teenager.

As adults, we don't sit quietly in the corner with that optimistic, bad tragically sad look in our eyes while all the other kids have that second or third piece of birthday cake. Or have to stop running and jumping on the inflatable playground so someone can test our blood sugar for us. Or wonder why we have a pediatric opthamolagist, a pediatric endocrinologist, a pediatric rheumatolagist, a pediatric nehprolagist, and a pediatrician.

Adults get it. We don't like it, but we get over it. Kids don't get it, and while they put on a brave face, they know. The sad looks on their faces tell the story.

I'll throw a T2 voice in here: when diagnosed as an adult, once one gets over the initial shock and denial, one is at least able to say, "OK, now how do I deal with this? Why did the doctor choose this option instead of that one?", do the research, discuss things rationally, and become an active participant in one's own care decisions. While I'm certain that children with diabetes gain precosity of understanding with respect to diabetes, they are not generally mature enough to comprehend the technical literature and to sort out research and funding biases. (OTOH, there are fewer care choices for T1 than T2, but the daily management is much more attention-intensive.)

I was diagnosed as a T1 almost 4 years ago (D-day is Dec 1st) and it completely blindsided me. I am completely grateful that I had a normal childhood. I see children and feel so bad that they didn't get to have the same carefree upbringing that I did.

It is always so great to meet someone else living daily with this disease. I appreciate the candid dialogue that goes along with conversing with other diabetics. Even though family members can sympathize with a bad diabetes day, they will never know how it truly feels to really be a walking pin-cushion! ;)

I am 32 and also a fairly recent T1. It will be my 1 year anniversary on the 28th of November. I think for me it has been easier because I could fully take control of my health. I think it is hardest for parents when their child is diagnosed because the most important part of being a parent is keeping your child safe and healthy.

hello!!! I am an italin dibetic girl.I am sixteen years old.I already apolagise for my grammatical mistakes.However i would like to study one years in the U.S.A and I would know which
kind of assistance i can have for my diabetes and if i can do an insurance for my diabetes. i need soon an answer. thanks

Hi Kerri - I was diagnosed as an adult, and can't imagine having T1 as a kid. I got to do childhood without the worries, but it was so hard to go through this diagnosis as an adult...I really wanted someone to come and take over for me. I wanted taken care of when I was completely overwhelmed. There was no sharing the burden, no parents to take over and make the hard decisions - or any of the decisions. With this disease, I guess there is no better age to get it.

I was diagnosed two years ago at 17. There are some things I did that I wouldn't have done with diabetes. So it does matter that I didn't grow up with diabetes.

But diabetes is already just part of who I am. In Cheating Destiny, James Hirsch's son is diagnosed at age 3 or 4, and he notes that his son won't remember life without diabetes- that he himself, with a teen diagnosis, doens't really remember life without diabetes.

I think that diabetes -particularly type 1, with its intensity- becomes a part of how you think of yourself and your thoughts about life after a few years (maybe not by six months) even when you have memories of things you wouldn't have done if you had had (or known you'd had) diabetes.

Also, I don't think my teen diagnosis lowers my risk of complications because it was a slower onset and I went at least a year of being sick and having really uncontrolled diabetes for at least one year (and my guess is three) is probably worse than what would've happened had I been diagnosed 10 years earlier.

I was diagnosed at 18 (3 weeks into my freshman year away at college) and will turn 31 in January.

6 months, 7 years old, 18 years old or 29 years old...it doesn't matter when you were diagnosed, it's still the same disease, same life changes and it still sucks. But cheers to all of us in this blogsphere in getting thru the disease together!

I was diagnosed one month after my 29th birthday - about five months ago now. I very definitely remember life before diabetes! I too suspect that I had been ill for quite a long time before I was diagnosed, as I remember struggling to find the energy to get through the day. I used to eat chocolate and drink Coke to get me through the day! If only I had known!

The thing that I most dislike about being diagnosed at 29 is not having the support systems that a child has. I wish I knew another person who is dealing with the same thing. I wish there was a support group in my town for it.

It's interesting how T1 diabetes was once thought to be a juvenile only disease. Hopefully, in the future with advances in medicine, we can say that diabetes was a disease we once worried about.

Post a comment

(All comments are moderated. Thanks for your patience!)