Type 1 Diabetes (faux) for a day(s)

We were recently fortunate to get a replacement transmitter for Angelina’s Dexcom system.  The warranty period on the transmitters is six months and we had her first once for just over 8 months (since January) when we decided to swap it out for the new, slimmer version.  The old transmitter had been acting a little weird, but was generally still okay, but since the clock was ticking on the new warranty we decided it was time to swap them out anyway.  That left us with an operable transmitter that’s clock was winding down in the diabetes supply cabinet.   We also recently had a small part of plastic break off of her receiver and lost the usb port cover, which is something that is covered under warranty and scored us a nice new receiver yesterday.  I sent her off to school with the new receiver today and an idea came to me… I’m going to wear her spare devices for the next few days.

So, this morning after she left for school I shot myself with a Dexcom sensor.  I’ve worn a sensor before, shortly after we first got her Dexcom, but it was only for about 36 hours and then she decided that she wanted it back.  Since we temporarily have a full extra system I will be able to wear the Dexcom for at least a full week (I could likely wear it longer, but I do have to send the receiver back to Dexcom since it was a warranty swap to avoid being charged $199).  Since I was hooking up the Dexcom anyway, I decided to also put in a pump site – skin tac, tegaderm and all.  And since we don’t have a spare pump lying around I just taped the tubing to the Dexcom receiver since I have to carry it anyway.  This may seem like still not comparable to what Angelina has to carry with her, but when we are together I generally carry her Dexcom receiver anyway so now I will carry two receivers part of the time, while she carries 1 receiver and a pump part time, and then just the pump while I carry 2 receivers.

It’s not really the same as having Type 1.  Because, yes, I’m attached to bionic parts with tubes and tape, but I don’t have to deal with the ups and downs of blood sugar.  I will still be carb counting, because I do that already for Angelina, but I won’t have to actually bolus myself with insulin since my pancreas still kicks it out pretty well on it’s own.  I will, however, be checking my blood sugar a few times a day since the Dexcom requires at least 1 calibration every 12 hours, but I won’t have to check before every meal or if I wake up in the middle of the night.

Wearing these devices will hopefully give ME a sense of awareness though.  That sense of having things attached to me 24/7 like Angelina does and having to be mindful of that when I change clothes, take a shower, or walk past door knobs to make sure tubing doesn’t get caught and sites yanked out.  I’ve placed both sites on my abdomen because I’m home alone and those were the only places I could reach easily on my own.  I considered wearing the Dexcom on my arm like Angelina does, because it makes it visible.  It makes diabetes visible and it causes her to get a lot of stares and people asking questions – sometimes it’s annoying, but it also starts a conversation about diabetes and every conversation about diabetes raises awareness.  But, alas, I cannot reach the back of my arm on my own to place a sensor.  So, my awareness will have to be here.  In pictures

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#DBW 1 – Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)    From: http://www.bittersweetdiabetes.com/p/2014-diabetes-blog-week-topics-posts.html

 

While I’m not out to change the entire world, I do try to change at least our small part of it.  So, what am I passionate about when it comes to diabetes?  Can you guess?  I can’t pick just one topic.  Support.  Education. School issues.  Those are probably the ones that I participate or talk about the most.  The ones I am most passionate about.

I don’t see “support” and automatically think about it being advocacy though.  I think of it as a lifeline for anyone who is dealing with diabetes in any way – whether it is a person with diabetes, parent of someone with diabetes, friends, family, co-workers.  There is no limit to who can benefit from support when it comes to having diabetes touch your life.  I honestly wouldn’t be where I am right now in Angelina’s journey if it weren’t for the DOC and the 24/7 support and connection with so many other people who are walking a parallel road.  Which brings me to the next cause:

EDUCATION.  Diabetes education is probably the thing I am most vocal about, simply because I feel like there’s not enough awareness out there about Type 1.  And it seems that even the people who try to raise awareness for Type 1 do it at the expense of Type 2.  By saying “well, that statement that you made about food doesn’t apply to T1.  My T1 child didn’t do this to themselves.”  While the statement is true, it implies that people with T2 “did it to themselves”, which is not always the case.  I don’t agree with raising awareness and education for one condition while making ignorant statements or putting down people with another, similar condition.  Yes, Type 1 and Type 2 are different.  Yes, Type 2 does have risk factors that include lifestyle choices… but, it also has a strongly genetic component.  And regardless of any of that, diabetes, in any form, SUCKS!  No one asks to have diabetes.  So placing blame doesn’t benefit either cause. If I am going to teach someone about something and part of that education is differentiation from a misconception they have based on something else then I am also going to educate myself on the other topic (in this case, Type 2) so that I don’t come up looking like the ignorant and mistaken one.

Lastly, school issues.  This is a tough one for me.  I have a loud mouth, and a blog that I can share a lot of information on.  Feelings, frustrations, triumphs, thoughts, information…  But when it comes down to it, advocating for your child at their school is HARD.  Because it’s not about just shooting your mouth off.  If you want things done your way at your child’s school then you have to find a balance between being pushy, and being a push-over.  If you go in guns blazing, chances are the school personnel are going to push back against everything you demand.  But sometimes, if you go in nice and easy they just steam roll right over you and you leave feeling like you weren’t heard and didn’t get the things that you want and need for your child’s safety and well-being at school.  Finding the balance is difficult.  Forget difficult, it’s damn near impossible.  Sometimes you can’t do it on your own.  Both the American Diabetes Association and JDRF will provide information for working with the school on your own to come to an agreement about how your child’s diabetes will be managed at school.  Sometimes, doing it alone isn’t enough.  Both the ADA and JDRF have legal advocates that can help guide you and will also attend meetings with you to make sure that the laws and regulations regarding students with diabetes are being followed.  And sometimes, the school seems to go along with all your requests during 504 meetings and then doesn’t follow the accommodations that were agreed to.  Taking the steps to make sure that not only are the accommodations being agreed to, but also followed, can be a tenuous process.  But, in the end, our children are the priority and as a parent we must do whatever it takes to ensure that they are having their needs met.