inDpendence

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

I was going through my brain trying to come up with an idea for today’s post.  First I wanted to ask for help with the new page on my blog.  See it up there in the right corner “For PWoD’s: What it Feels Like.”  And then I saw Kerri’s post for today and I was so relieved because all I wanted to do was repost mine as well.  So here is my D-Blog Day post from 2010.  (Also the first time I got a comment from Kerri and I felt like I “made it” as a blogger.)

Courtesy of JDRF YLC

1. Just like it takes a community to raise a child, it takes a community to take care of and support a person with Diabetes.
I wrote about independence; I am still serious about not wanting to do this by myself.  Technically, first and foremost should probably be my doctor.  But first and foremost are the friends I have with diabetes.  Diabetes is so much more than a broken pancreas, and on the bad days my friends are there to listen, support me, and possibly give advice.  My friends without diabetes are also supportive, and help me be just another person.  And of course there is my family who has been there since day 1.  It’s the little things, like my cousins wearing blue last week, or having Fruit Pizza as a birthday cake, or helping me test my BG as a kid, or my uncle not having favors at his wedding, but instead donations were made in my name to the American Diabetes Association.  And of course there is Mom & Dad.  Words cannot describe what they have done & will do for me.  All these people make it possible to live with diabetes, and live fully.  Then of course there is the endocrinologist and that support system who is there to make sure I am up to date with my diabetes information, that I am taking care of myself for the long-term, and there to answer my questions when I have exhausted all other options. When I was little, there was the diabetes educator and the nutritionist.  Every year they helped us figure out a good diabetes schedule that worked for me around the school lunch schedule.  (Especially in eighth grade when I had lunch at 10:30 AM.)  There is the customer service reps at Minimed who help me when I have an alarm I’m not used to, or a broken pump.  There is my gym, the lady at the bar with a pump, the diabetes cookbooks (which I just get angry at because I feel they’re trying to tell me what to eat), and last but not least, online support groups (which I’m definitely new to).  I decided to jump in with both feet, and I am whole-heartedly enjoying this decision.  Thank you to all who are making this a wonderful experience.

2.  Just because I act like it’s no big deal, it IS a big deal. 
I don’t make a big deal about my diabetes.  I fight tooth and nail every day not to because I want to be treated like a normal person.  I don’t want people telling me that I can only eat certain things, or that I can’t participate in activities, or to use it as an excuse in a way that I am acting.  But it is a big deal, because it can affect everything.  The one day every year that I make a big deal about it is July 4.  And while I don’t want people making a big deal about it every day, I want you to make a HUGE deal about it July 4.  Celebrating every anniversary has always been a big deal in my family because every year it is an accomplishment.  If it has been a bad year, then it means we survived and we’re on to the next one.  If it was a good year, it is time to celebrate and give ourselves a pat on the back.  And hope for the same things in the coming year.  Every year is big; because every day is big.

3. Just because my A1C isn’t perfect, doesn’t mean I’m not working my ass off to get it there.
But first let me tell you, there have been times when I wasn’t working my ass off.  It’s hard to work hard for diabetes.  I test a lot.  I try to test every time before I drive. I try to keep track of my numbers and find patterns.  Once a month, I test in the middle of the night for a week.  I try to eat a healthy diet. I try to exercise as much as possible.  I use temporary basals when I exercise to prevent lows.  I like to be prepared and carry a humalog pen in my purse.  I have a bottle of tabs next to my bed, in my glove compartment, and at work.  These are general things that I have to do, and seem little in comparison to the testing and bolusing that goes on day after day.  It’s hard, it really is.  And just because something worked one day, it doesn’t mean that it’s going to work the next day.  There is the difference between simple carbs and complex.  And complex carbs can affect my BGs differently as well, especially if accompanied by protein.  It’s hard to remember how every single food I consume individually affects me.  There is a lot to keep track off, and yes, I work my ass off.  It doesn’t always work out, but every day I have to try.  If it does work, I’m going to be pretty damn happy.  I work hard every single day.  I try every single day.  But that doesn’t mean that it’s going to work.  Don’t judge, especially based on one number.

4.  There is a definitive Before & After. 
My first memory is in the hospital.  I remember Aunt Shaunna walking me around the hospital in my red wagon.  I know that my Aunt Cathy gave me a teddy bear dressed as a doctor who I named Dr. Cindy after my mother.  I remember standing in the pantry (in all it’s glorious greenness) not being allowed to take a sip of my father’s Coke.
There are stories that I know about and ask my mother for more information.  Like the Christmas Party where all the kids locked themselves in my room.  We don’t have new locks, we have fancy, intricate keys (that match the look of a 100 year old house) and we were too young to figure out how to then unlock the door (and the “older” kids had just gone downstairs to get food).  Dad had to get the ladder out, climb up to my window and break the window to get in.  And the simple question that I asked, “Mom how old was I when we locked ourselves in my room?”  ”Well, I know you didn’t have diabetes, so three.”  I found a picture of me at an Independence Day parade, and asked the question, “Could this have been the day?”  ”Well this guy behind you has a Coors, so we’re in Colorado for Uncle Peter’s wedding.  Plus, you were a brat that day so I wasn’t taking your picture.”  It’s amazing to me how one day can determine a memory, an emotion, and so much more, like the rest of my life.

5.  If you’re busy and don’t have time for diabetes, too bad; it’s still there.
I’ve had this lovely friend for 21 years: without a vacation.  Around the fourteen year mark, I was fed up.  I suppose it had been building, but no one really knew.  Camp Carefree was the closest thing to a vacation I ever had, and I had it every summer for two weeks from 1994-2002.  I was prepared to go back in 2003, and ready too.  But it wasn’t in the cards for me that year and I was devastated.  It wouldn’t have been the same; it would have been my first summer as a counselor (I would’ve been giving kids their diabetes vacation, not getting my own).  I fought tooth & nail to get back that summer, and so did my mother.  Instead I started volunteering at the local elementary school with their summer program.  In August, I left for college and tried out for the tennis team.  I returned home a few days later, only to return again for classes.  I had a few friends from high school there (this was not the reason I chose the school), but that was it.  I wanted to be a good college student, but my shyness took control.  In that time, my diabetes control also went downhill.  I had the pump, so I was always getting insulin, and that’s pretty much how I took care of it.  I had been taking care of it my entire life, so ignoring it for a little while would be okay, right?  Absolutely wrong.  Shortly before Thanksgiving in 2003, I was admitted to the ER in Newport, then sent to Providence since there were no endocrinologists in Newport.  At the time of admittance, my BG was 789, and the nurse gave me regular ginger ale.  I was in the ICU, then a regular medical floor.  And then I went back to school.  As I was leaving the hospital a week later, I was ready to be a good patient.  I was turning my life around; but I wasn’t ready for that.  As soon as I got back, I reverted to similar habits.  Although, I was in constant contact with my endocrinologist.  I kept living and moving and going, but my diabetes has never been the same.  I tried really hard.  But it is hard.  To be prepared for everything, always.  To tell people you don’t know very well that you’ve got to stop and test, when you’re worried about fitting in.  I’ve been working on it, but college & diabetes: I just didn’t know how to do them both.  I exercised off and on to help me.  I always ate pretty healthy.  It was just the logs and the keeping track of patterns.  Now that I’m in the real adult world, I knew I needed to change things.  Unfortunately, it took another trip to the ER in March, and I got back into running.  But the summer, and friends, and hearing about so many children with diabetes with other health issues, and I’ve gotten back into it.  I started testing.  Testing more means it’s easier to find patterns. And when it’s easier to find patterns, it’s easier to stay in tighter control.  But it wasn’t easy.  Now that I’m in the habit of testing, it still isn’t easy.  It never will be easy.  I like to think that I’ve taken my life vacation and I’ll be able to go on for the rest of my life as a “good diabetic,” but who knows.  It’s only been a few months and sometimes I still think it would be easier to go back, but I know I wouldn’t feel as good as I do in this moment of my life.  And maybe when I want a vacation in the future, I can look back here and see the trouble it caused.

6.  It is the best thing that has ever happened to me.
There are days when I sing this from the rooftops, and days when I remind myself that I was singing it from the rooftops.  But it is absolutely true.  I learned as a young child what affects my body (and probably others’ too, they just don’t have to monitor themselves), such as the change in seasons, or time changes.  My parents brought me to a support group at the hospital once a month where I was able to meet other children with diabetes.  I met a great friend too, and she lived in my town.  We became friends in first grade, and went to school together until eighth grade, and camp together for 10 years.  We went together that first summer, not knowing what it would be like, not knowing who else would be there, not even knowing if we’d like it.  We LOVED it.  We met our best friends.  I’ve spoken before about my friends from camp, well here is where I met them.  How can I not be thankful to the one thing that introduced me to my best friends?  When I needed to find something outside of NH, I found a diabetes camp in Oregonwhere I went for two summers.  I found more dia-buddies out there.  The best, most supportive friends in my life came from the pure fact that I have diabetes.  It is, and always will be the best thing that has ever happened to me.  Sometimes I just need to be reminded of it.

Click for the What They Should Know – Friday 5/18  Link List.