Tuesday, November 1, 2011

Diabetes Awareness Month, Starts at Home.

This post was written 2 weeks ago, but saved for today in honor of T1 Day.

This post has grammatical errors, punctuation errors and all kinds of mess. Some of it was written at 6am, some at 4pm, just when I felt inspired.

So please forgive the mess.

I decided to honor Justice (and all other PWD/CWD) this week for his Diaversary, which was Friday the 21st, by mimicing his "life" so to speak.

I was hooked up to a saline filled Animas Ping for a week, I checked my bg at every meal, and whenever he wanted me to. I bolused, and I did site changes. I used steel sets 8mm and 6mm just like he does.

This is my journal I guess. I started writing this about day 3 into it, and will keep adding to it and editing it until I am done. So sometimes im speaking in past tense, future or as if its happening at that moment because it is. This is a week of writing thrown together.




This is nothing compared to actually living with Type 1 Diabetes, of course. I cant feel the highs, lows, and really understand what its like knowing my life DEPENDS on the pump, and bg checks. But I did get more perspective, and understanding, of why Justice rolls his eyes when its time for a bg check, why he gets sick of pushing buttons, or screams like hell when a site comes out the wrong way.

DAY 1:
I have worn sites before, many times. Steel and plastic. So putting everything on wasn't a biggie. I was excited! Justice was thrilled. I felt really connected to him, a sense of same same not just "mommy understands". Within the first 3 hours the site was hurting like hell. I realized I didn't push it in all the way (we use manual insertion steel sets), so it was pinching my skin whenever I moved. I pulled it, and holy fucking cow ball it hurt like hell! I inserted a new one in my stomach (the place Justice hates) trying to see if this was better. Yea that didnt feel good at all. I think i inserted it wrong because by the morning it was burning and bleeding! Site change...again. as J says. UGH! I used the arm and wow so much better!

Day 2: Ok. Seriously i used the one touch pricker, and the multiclix pricker. HUGE difference. I was in so much pain after using the one touch one. My finger burned like hell, and itched for hours. The multiclix was way gentler and i cant imagine having J use the other one now. Tubing. Yea i was getting cause to all kinds of shit, justice thought it was funny cause he actually never has this issue. When i would get caught i would only notice because it would pull the site and i would feel a slight twinge (word?).  Bolusing is a annoying. I get it now. Who wants to have to wait to sit and eat? Yes it must be done and he does it but i get why he groans from time to time. The man just wants to eat! The pump itself felt heavy, my pants would pull down, and i even tried to wear a dress, and rock some disco boobs a la Kim and Kerri, but alas my girls are too big for it to be comfortable TMI? Oh well. There are well endowed pumpers out there who im sure have felt the same. I went with pants. People stare. They wonder. They dont ask questions they just look. As an adult i dont mind it but i wonder if others do? And im sure kids do. They dont understand the curiousity of others.

Day 3.
Site is itchy. Tape is coming off. Had to put dressing over it so it wouldnt come off. Tape sucks. When i pulled it off for site change today it ripped a ton of hair off my arm! That shit was a cheap wax job yes, but painful as shit!

Day 4.
I feel bad. I am wearing the pump, checking bgs, bolusing. I have not taken the pump off at all except to shower. But i still dont feel the true emotions and physical stress the #s put on J and others. I guess i need to make peace with the fact that i never will. But it still hurts, still like a punch in the stomach when i think of all my baby has to endure, and has endured.

Day 5.
Its Justices Diaversary! So i havent noticed the pump as much because i have been running around like a mad woman baking and cooking. Oh yes. We celebrated. 3 years of D boy. 3 years of kicking Diabetes ass!!! Cake and all.

Day 6.
I am really starting to get used to the pump aside from sleeping. But i know its coming off tomorrow and for that i feel guillty. Guilty because Justices cant, guilty because i am happy to sleep without it, and i can. My son cant. He runs on this pump its his lifeline. His life support. I would wear 10 pumps if it meant he didnt have to.

Day 7.
Pump is off. Justice is sad. He said he loved having someone else with a pump, and someone else checking with him more than the 2x a day daddy does (dads type 2, no insurance we must conserve strips, i used expired ones from 2006). But we had a surprise in store for him...

Synsyre wore the pump for 24 hours, to sleep and all, to show his big bro how much he loved him. And when his site got pulled out, and he cried J was there to comfort HIM as Synsyre normally does.  It was a beautiful moment. And I feel so blessed to have such outstanding kids. Synsyre hated the pump, he said he LOVED it but he kept asking to take it off, so I know he didn't really. He's a tough kid who's love for his brother outweighs any pain.

Now the big surprise, the reason I took the pump off after 7 days and not 10 or 12, is because Biggah wants to wear it as well. Justice has no idea. Tomorrow while theyre in school i will hook him up.

I hooked Biggah up today. He chose his stomach. My 6'8 man flinched when i stuck it in (nasty nasty), he said it didnt hurt exactly but it didnt feel good. It was very awkard watching him sleeping with it. He has his own thoughts on the subject.

He pulled his site a few times and whined like a bitch. His words not mine. It was weird for him sleep, he had it all jumbled under his arm, and then used Justices Tallygear armband which he said rocks. He forgot to check his bg before driving, every meal, activity, and he said he could really see why it drives J nuts to have to do so. Its not what we are "supposed" to have to do. He's a man of few words but has a new found appreciation (or MORE respect if possible) for PWD, CWD, and our hero J.

This is no way was living like a Type 1 in real life. We didn't feel the emotional and mental toll it takes.

While I feel my own emotions as a D Mom, its not the same as being the one living with the disease. I get that.

Today and everyday honor, respect, support, educate for, people living with Diabetes.

Because you think you know, but you have NO idea.

I still don't.....


Meri said...

I think it is great that you had a small glimps into his life. I think the monotony of it all is a huge thing that we can't completely understand. I know you made a difference for Justice by wearing it, and that is huge! Way to go awesome family!

sky0138 said...

what an amazing family and support you all are to Justice. I was smiling reading this whole post. Thank you for sharing it.

Jess said...

wow, you guys rock! j is so lucky to have such a wonderful family! :)

shannon said...

thanks for sharing your adventures in pumping. i think it's wonderful that the whole family is involved. i bet my kid would like me and her dad to do something like this. where did you get the extra pump and saline?

Jules said...

what an awesome post today! fascinating thinking how it would feel if i did tests/needles along with my son. i loved the part where your boys comfort each other, they sound like such close friends as well as brothers.

Jill said...

You, my friend, are simply AMAZING!!! J is sooooo lucky to have a family participate in this nice 3yr surprise for him. Glad you could share your journal of the week. (((HUGS)))

Stephanie said...

So cool! That is so wonderful that you guys supported Justice like that. What a neat family you are :)

Sara said...

Your family is amazing!

The minute I figure out my holiday plans (remember my brother lives near you) we have to figure out how we can meet up!!

I need to meet the superheroes and their superhero parents!

Penny said...

Your family is just awesome Lex!

Celebrate With Us!