And Then There Were Three

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Most of you already know my sister Ana and I were diagnosed with type 1 diabetes in 1994 when she was 3 and I was 11.  We have another sister and two brothers totaling five kids in the family.  Three weeks ago, my 27 year old brother, Alejandro, went to the doctor feeling sick and came out shocked to find out it was type 1 diabetes.

Three out of five of us?

I can’t even wrap my head around it.

As for my brother, he’s been doing well.  Without my influence, he’s decided to avoid giving extra shots of insulin here and there and keep the insulin dosage low by avoiding processed food and lots of carbs.  Luckily, he likes vegetables and low carb protein sources like meat, poultry, and nuts.  He’s aware of how having diabetes can give someone more compassion and meaning in life.  He’s trying to figure out how to best carry his meter around.  Any guys out there with ideas as to how you do it?  Girls do seem to have it easier with their huge purses.

I’m glad that my brother is a fast learner (though I wasn’t always-it’s not fun to share Algebra II class with your 1.5 years younger brother).  But I’ve been really disappointed however, in the way that his health care provider has handled his case.

They didn’t have him see a dietitian for carb counting lessons or make sure he saw a diabetes educator.  He doesn’t even have any follow up appointments scheduled.  They sent him home with dangerously high blood sugar and only some long acting insulin to lower it.  Later, they gave him fast acting insulin and told him to give 6 units before meals.  They didn’t go into how fast acting worked with meals so he had to suffer some major lows since his meals were low carb.  They told him to give his insulin right when he started eating, no matter what his blood sugar was prior to eating.  Of course, he’s heard different things from my sister and I and this has caused some confusion.  Everyone thinks they should listen to the doctor, right?  They also didn’t make him aware of how to handle lows, how many carbs to take in, and no glucagon was mentioned or prescribed.

Luckily, he does have a family that knows loads about type 1 diabetes but what if he didn’t?  The way they “take care” of a newly diagnosed sounds deadly to me.  And that seriously disturbs me because type 1 diabetes is tricky and challenging enough with all the information necessary.

I now have two siblings with type 1 and an uncle with type 1.  What’s up with our genes?  Is it the water?  What is it?  So many questions…

Either way, I’m more committed than ever to help people with diabetes understand that knowledge is power and that we can do this and live great lives.  And by watching the changes in my brother’s life, I’m also reminded of how life changing a cure would be for all of us.

Any words of support or encouragement you can leave my brother?  I’d be so appreciative :)  Let’s let him know how great this community is!

4 thoughts on “And Then There Were Three

  1. Stacey D.

    Wow Sysy, I’m sorry to hear about your brother’s diagnosis. And that sounds extremely neglectful to diagnose him without the proper “instructions” for treatment. Fortunately he has two sisters who know better and can hopefully guide him in the right direction. It is so mind boggling how there are families with multiple cases of type 1 yet there are some with no history at all. The body is a complex thing indeed.

  2. Kate

    Alejandro, I wish I didn’t have to welcome you into the circle with open arms, but I also remember being a really scared, newly diagnosed girl, and I definately needed some support. Well, that was a long time ago. I was 11 when I became T1. And sadly, I didn’t embrace the amazing power I now have over this disease at that time. It took many (many) years for me to realize how to do what it sounds like you are already doing. When I need some encouragement, I listen to your sisters! I also have a few close friends who listen to me complain when I need to. I also have a great Endo and would recommend getting one soon. Hopefully you’ll be able to find someone you like and who listens to you :) I have found few general practitioners that have any specifics to offer, but my Endo does. Stay strong, stay active, ask for hugs and help when you need, and remember that you can do this!
    As for carrying a meter, I know a couple guys who use a CGM when they can’t carry a meter. Another one uses the Mini. He keeps it in one pocket, test strips in another.
    You might checkout Stickjewelry.com for a cool ID too.
    Wishing you great health, Alejandro!

  3. John Manganiello

    Sysy, I’m sorry to hear of Alejandro’s Dx. I had a Grandmother and a Cousin with T1, and when I was Dx’d in 1974, was unaware that it could be genetic. It’s also surprising to hear how little they taught him before releasing him from the hospital! I wish him the best, and I’m glad that he has the support of you and your Sister.

  4. Scully

    When you first told me about the diagnosis I was crushed for your family. As most of us know we wouldn’t wish Type 1 on even our worst enemies. Your bro is insanely lucky he’s got two older experienced sisters to help him through the tough parts. My jaw dropped when I read what his doctors suggested. Have they a death wish on their patients?! malpractice at it’s best.

    Sometimes the idea of going back in time and wishing for something else is just that, a wish. But I wish your family could get a break.

    All the best to your brother and the adjustment period. May he learn from the best! I sure wish I had an older sister to learn from.

    So will it now be called “the girls (and boy) guide to diabetes?” just kidding. :P

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