Box of Needles.....

When I was in high school, I didn’t want my friends to know I had diabetes.  I did everything I could to hide it, pretending I was just like the other kids.  But as I went off to college, I felt I had a fresh start.  I didn’t know anyone who was going to the same college I'd be attending  So I felt that telling classmates I had diabetes wouldn’t be awkward, since I hadn’t been hiding it from them for years like with my high school friends.

The fresh start worked and I no longer hid diabetes, but I also didn’t talk about it much.  I was still the only person I knew who had diabetes.  And it still made me feel different, and also ashamed because I knew I wasn’t doing very well with my diabetes management.  So even though I wasn’t hiding it, I wasn’t exactly loud and proud either.

One evening I was at a friend’s apartment for a party.  The bathrooms in our on-campus apartments had storage closets with sliding doors for stuff to be stowed.  Someone had left the sliding door open, and I couldn’t help but notice an oh-so-familiar-to-me box of syringes.  I wondered who it could belong to and I couldn’t get it out of my head.  So I asked my friend about it.  As it turns out, his roommate, who I didn’t know all that well, had diabetes.  “Yeah, he always ends up in the hospital because he'll eat a big bag of M&Ms.”  I was kind of shocked.  Shocked because I wasn’t the only one with diabetes.  Shocked because I wasn't the only one who wasn't doing very well with my diabetes management.  And also shocked because this poor guy kept ending up in the hospital.  After all, I ate more than my fair share of M&Ms as well, but I was okay.  I couldn’t imagine what I was doing, or actually not doing, could land me in the hospital.

I wish I could say this was a wake-up call and I started working harder at diabetes.  But that wouldn’t come for many years later.  I wish I could say I talked to this roommate and commiserated about life with diabetes.  But I didn’t.  I didn’t know how to.  I didn’t have the tools.

I honestly believe things would be different for me if I was a college student today.  I lacked support back then, but today support is ready and waiting.  One great source is The College Diabetes Network.   They have launched Off to College Booklets for students and parents. You can check out a preview of the Parent Booklet and the Student Booklet and can request free copies to download here.

I really wish resources like these were around when I was in college.  And I wish my college had been a part of The College Diabetes Network.  Maybe it would’ve helped me feel comfortable enough to talk about diabetes with my friend's roommate.  And maybe, all these years later, we’d still be in touch.

Instead I wonder how things turned out for him and hope that he’s doing well.

Memories - #DBlogWeek Day 3

You can find more Memories posts on the Wednesday 5/15 Link List.

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

It’s easy for me to share the good stuff.  It flows onto the page with barely any effort.  The hard stuff is much more difficult, but I think it’s necessary too.  So today I’m sharing a story of ketoacidosis and a very different me from the person I am today.

It was back in June of 2003.  Pete and I had been engaged for a month.  We had a big weekend planned - a friend’s wedding on Saturday, a Van Morrison concert on Sunday, and the day off on Monday to sleep in and rest up.  But Sunday night things started to go awry.  As "Van the Man" performed I started feeling pretty cruddy and exhausted, so much so that I was actually grateful when the concert was over.  On the way home, I threw up all over Pete’s car.  And things went downhill from there.

I was home sick for several days, and a lot of it is a blur.  I couldn’t keep anything down, but my body kept trying to vomit.  I barely had the strength to drag myself upstairs to the bathroom.  Everything seemed to have a golden halo around it.  My sleep was restless and filled with weird dreams and hallucinations.  Pete stayed up late into the night searching WebMD to figure out what to do for me.  He went out and bought me a meter, because I hadn’t tested my blood sugar in many many years.  He kept checking my blood sugar but all it ever said was “HI”.  Yet I was sure I would just get better, and I refused to see a doctor.  That changed after a phone conversation with my mom.  As we hung up, I said “Okay, I love you, bye.”  This is going to sound really strange, but when she heard “I love you” it was a sign to her that something was wrong.  You see, I do love my parents and I’m close to them.  And they love me back, I know.  But we don’t ever say it on the phone.  It was such an out of the ordinary thing for me to say that Mom come right over and told me she was calling 911.  I protested, I insisted I didn’t need them, I refused to go to the hospital - but before I knew it I was in the back of that ambulance headed for the ER.

My endo at the time came to see me and told me I was in diabetic ketoacidosis (DKA).  I had no idea what that was.  It was at that moment that I realized how much I didn’t know and how important it was for me to make a huge change and start taking care of myself and educating myself.  I mean, really, how could I have lived with diabetes for almost 25 years (at that point) and not know about DKA.  When I was finally released from the hospital I bought Diabetes for Dummies and started trying to learn about my disease.  I started seeing my endo every few weeks (instead of every few years, like I had been).  I started to realize that she wasn’t the best endo for me when I would see only 300s and 400s on my meter no matter what I did, and yet she continued to reduce my insulin doses.  She was sure I was having lows I wasn’t feeling and the high numbers were rebounds.

A few weeks later I started getting sick again.  I called the endo’s office and was told that I didn’t need to go to the hospital.  The doctor on call told me to just eat a banana to settle my stomach.  I hung up, vomited in the sink, and headed to the ER.  I was just on the edge of another bout of DKA, and I was admitted for a few days.  My endo was away, so I was visited by an endo from another practice who was covering.  Within a few minutes of conversation with this doctor, I realized the poor care I was getting and knew I would be making a switch to that practice and my new endo - who I am still seeing today.

Ten years later I am in the best diabetes health of my life.  I’ve carried an A1C below 6.5 since I went on a pump and CGM in 2008.  I don’t know everything, but I feel like an informed and educated patient.  I went from never wanting anyone to know I have diabetes to never shutting up about diabetes.  I am not perfect.  I still have problems and crappy numbers and fears and days when I’m ready to give up.  But I also have good days and I have a wonderful support system both on-line and off.  This is the silver-lining to my DKA story.  It’s why I believe what happened in June of 2003 happened for a reason.  And I want anyone who is going through a dark diabetes time to know that if I can turn things around, anybody can.

PS: And the fact that Pete stuck through me through all of this, including putting up with a seriously smelly car for a while, and married me one year later?  Yup, he's one of the best!

Dear 16-year-old-me . . .

Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

Dear 16-Year-Old-Me,

You probably think you know everything and you will just want to ignore this letter.  Please don’t.  Please let me help you as much as I can.

Diabetes is hard.  Things will change, treatment options will advance . . . . but I’m going to be completely honest with you when I say diabetes will still be hard.  But what you are doing right now is just making it even harder than it has to be.

First, I want to tell you to TAKE CARE OF YOURSELF!!!!  I know you think that complications are unavoidable and that you  are half way through your life-span right now.  I know you think you shouldn’t even bother to try.  You are wrong.  I know for a fact that you will still be complication free by the age of 43.  Yes, you’ll have a few scares along the way, but you will be just fine.

In  a couple of years you will lose your beloved aunt to diabetes complications.  You’ve been watching her suffer for years.  You think this is a look into what the future holds for you.  It isn’t.  You can live a better diabetes life than she did, because you are lucky enough to have more treatments available to you.  It’s okay to remember her - but don’t remember her as a look at where you are headed.  Instead think about how proud she is to see you living a healthy life.

And here’s another thing you need to know.  LET PEOPLE IN!!!  You can, and should, trust your friends and stop hiding diabetes from them.  There will come a day when diabetes plays a huge part in your life and you will know more people with diabetes (or PWDs) then without.  You will want to talk about diabetes to anyone who will listen.  Crazy, right?  It’s going to be the best thing that ever happens to you.  It’s going to make you feel strong and empowered.  It’s going to help you manage your diabetes well.  It’s going to show you that you aren’t broken, you aren’t weak, and you aren’t the human equivalent of a factory-second.  Let people in.  Let people really know you.  Let people help you when you aren’t feeling so strong.  And you will be inspired to fight for them just as hard as they fight for you.

16-year-old-me, I know you can’t see it now, but believe me when I tell you one day you will understand that life with diabetes isn’t all bad.

Love,
  43-year-old-me

PS:  I have a message from your future husband.  He says “Remember when your grandmother used to say “Don’t sing at the dinner table, or you’ll get a crazy husband”?  You should have listened to her.”.  (He’s right about the crazy husband part, but I’m so glad you didn’t listen to Grammy!  Your future husband is very awesome - so if you won’t stay healthy and fight for yourself, do it for him.)

Not Quite the Only One . . .

All weekend and into today, I’ve been immersed in the updates from JDRF’s Government Day.  I watched the Blogger Round Table live and was so proud of my friends who worked so hard to advocate.  (If you missed the live-stream, you can still catch the archived video here.  Click on the one entitled JDRF Government Day Blogger).  I’ve also been following all of the action on Twitter - look for the #JDRFGovDay hashtag.

One of the presentations this morning prompted some side chatter about whether or not others in our families have Type 1 Diabetes.  This topic actually comes up more often than you would think, and I always answer that I’m the only T1 in my family.  But when I think about it, I realize it isn’t really true . . . .

Only one person in this picture has T1 diabetes (hint: it's me).
But everyone in this picture has more than one relative with T1.

My aunt by marriage (she married my Mom’s oldest brother) had Type 1 diabetes.  (She’s not in the picture above.  I’d have to make a run to my parent’s house to dig out a picture of my aunt.)  For as far back as I can remember she was in poor health.  She was on dialysis.  She needed a walker.  Eventually she couldn’t come to our house for visits because she wasn’t strong enough to walk to the second floor to use the bathroom.  She was never anything but kind and loving and I don’t ever once remember her complaining about anything.  She was an amazing woman.  In the spring of 1986, just as we arrived home after buying my prom dress, the phone rang and we got the news that she was gone.  (And yes, I do think that was one of the events that pushed me into the diabetes denial and rebellion I experienced during my college years.)

That leaves me as the only surviving Type 1 diabetic in my family, right?  Well, no, not quite.  Her daughter, my first cousin, also has Type 1.  So why am I always likely to say I’m the only Type 1 in my family?  It’s not because I’m lying.  It’s because I honestly forget.  You see, my cousin is not in touch with our family.  The last time I saw her was almost 10 years ago, at our grandmother’s funeral.  Her surprise exclamation of  “Karen, oh my gosh, you’re a grown woman now!” is a clue to how long it had been since the last time we’d seen each other.

Does Type 1 diabetes run in my family?  Yes, I guess it sort of does.  I’m one of three T1s - one related to me by marriage and one by blood.  And still, in a way, I am the only T1 in my family.  And thinking about that today makes me very very sad.  I miss my wonderful aunt very much and I wish she had lived to benefit from all of the amazing advancements in diabetes treatment.  And I regret that my cousin and I don’t have a chance to share our bond and lean on each other.

On the other hand, these circumstances make me even more thankful to have found the Diabetes On-Line Community.  We may not be related by blood,  but we share a bond more special than family ties.  And for that, I am very grateful.

30 years later . . . .

Remember when Type 1 Diabetes was called Juvenile Diabetes?  At 11 years old and freshly diagnosed, I was one of the juveniles.  But what happens 30 years later?  I grew up (sort of, although I'm still a bit of a kid at heart).  I live my life.  A lot of us do.  But a part of me feels forgotten.  A Juvenile Diabetic who isn't so juvenile anymore.

What if there was a place we could all meet?  What if Type 1s of all ages, including adults, were in attendance?  Some of us diagnosed decades ago and some of us diagnosed in the past few years?  What if it had some sessions to help us with the new issues we struggle with now that we are no longer children?  What would it be like to hang out with a bunch of people who really get it?  How great would that support system be?

Scott Johnson posted today about just such an event.  He talked about the possibility of some Adult Type 1 sessions being added to the Friends for Life conferences organized by Children with Diabetes.  Go on over there to read all about it and leave your feedback.  Pete and I have been planning to attend next July anyway, and the news that there could be more sessions for adults is very exciting!

Back to the Beginning . . .

Well, it's day 28 of NaBloPoMo. And I've got absolutely nothing to post about. Really, I've wracked my brain and I can't think of a thing. So I decided to go back . . . . way back. I'm going to re-run one of the first posts I ever wrote for this blog, since it will probably be new to most of you!  Actually, I wrote this for my blog on DiabetesFriends.net - I used to post there before I started this blog.  This is the second post I did.  I'm not running the first, because it was just a boring little introductory post.

Needles, Needles, Needles

Anyone who is a diabetic is very used to needles. Blood draws, finger sticks, and for some, insulin injections. How many times a year do we deal with needles? Too many.

I've never really thought much about it, and never found anything good in the fact that I jab myself all the time. Until this week.

This is Charlie, a sweet little 16+ year old kitty we adapted four months ago. In the past two weeks, he has suddenly become very sick. He has feline renal failure (and isn't kidney failure something we all fear as diabetics as well?). He is also severely dehydrated. If we can get him strong again, we may be able to manage his kidneys with medication. So how do we get him strong again? Well, every day I have to hook him up to an I.V. for 5 - 10 minutes. When the vet asked if I would be comfortable handling the needles, I was happy to be able to say yes.

Mind you, I was surprised to find out it is much harder to stick someone else than it is to stick yourself. The pain I feel every time I insert the needle into my poor little guy is much sharper than any pain from a needle I've given myself. But it's making him better, and that's the best news ever! So today, I am very thankful for needles and for my familiarity with them.

*** Unfortunately, we lost Charlie on February 9, 2008, just a few days after I wrote this post. I still miss him a lot.

Introduction

I've been a Type 1 diabetic since I was 11 years old. Needless to say, there have been a lot of changes and improvements in those 28+ long years. I do believe a cure will come some day - I'm not so sure I believe it will be in my life-time, but I sure do hope so.

My biggest hurdles currently are:

- taking the next big step and getting an insulin pump. My endo has been "pushing" me towards one, but the whole idea freaks me out. I can't explain why, but it does. However, I'm staring to come around and I think I may bite the bullet in two weeks when I have my next doctors visit. I know once I get over the hurdle of getting used to it, I'll probably wonder why I waited so long.

- my eye. This past Thursday, in my yearly eye exam, I got the news I've been dreading for so long. There is one small leaky vessel in my left eye. That news hit me hard. However, the rest of my exam went fine and there is no change in my vision. For now, we don't need to do anything. I go back in six months for another dilation, and if there are more leaks I will see a specialist. My doctor said after 28 years with diabetes, this is to be expected. Not good news, but at least we are catching it early and I am trying to stay positive and hopeful that we can do our best to manage this problem.

That's all for now, but I'm looking forward to the interactions this site will bring and to utilizing this blog.