Monday, April 30, 2012

I'm still here...

We've had a crazy couple weeks here, thankfully not crazy in the sense of any bad diabetes related events...just crazy. School is ending in a few weeks! My parents have been visiting in their RV. We've had myriads of end of year projects, planning for summer vacation, prepping the pool and yard for the hot Arizona summer and so on...

I can't believe we're 4 months past Alex's diagnosis. Some days, it seems like diabetes is just a part of our life. Sometimes, it still feels like it is something that will go away. Most days I remember her diabetes bag when we leave the house. There are those few times I have gotten in the car and backed out of the driveway and remembered that the bag was on the table. And it's like reminding me that this is our new normal.

My most awesome news is that Alex is again doing her own blood glucose testing! She did it by herself for about 24 hours early on back in February if memory serves, and then scared herself out of it and refused to do it again. We'd gotten to the point where she was saying she would live with me forever before she would poke herself. No amount of bribery, encouragement, reasoning, etc. would change her mind. Finally she was told she could not visit friends at their houses until she could test herself. About a week or so passed from that announcement and my mother came to babysit her. My mother encouraged Alex by explaining that Alex needed to test Grammy because Grammy is also diabetic and that if Alex and Grammy were alone together, they both needed to take care of each other. She convinced Alex to test her (and they coincidentally have the same meter). Within the day, Alex was again testing herself. And, she has been testing herself for almost 2 weeks now without help! Thank you Grammy!!!

We've also been tiptoeing into the world of insulin pumps. I was originally told we would not be able to pump for 6 months to a year from diagnosis. But as we've attended a few diabetes events and such, we keep meeting kids who were diagnosed in the same time span as Alex and they are already either trialing or wearing new pumps. So we wondered why it hasn't been brought up to us. Some of those kids share the same doctor. So I called the endocrinologist and they said Alex could begin transitioning to a pump. We signed up for a pre-pump assessment class scheduled on May 15th. My goal is to select a pump and get her pumping in June so we have the summer to get the hang of it before going back to school.

We had the fortunate experience of attending a recent JDRF conference in town and met with all the major pump vendors. Before the conference I was leaning toward the Animas pump because of the second remote and just word of mouth rave reviews I've received about it from other parents of type 1 kids. One thing I had a concern about was the OneTouch strips being used with that pump. We moved away from OneTouch early on because we had so much frustration with the amount of blood needed for those strips compared to our current freestyle lite strips. I hated the thought of going back to them. I had kind of dismissed OmniPod pumps because I thought the pods adhesive would bother Alex's sensitive skin. She hates most socks because of seams - how would she ever tolerate a big old pod stuck to her skin every day? But as we passed the OmniPod table at the event, I saw that their monitor took the freestyle strips. I stopped and began to speak with the vendor and look more closely at the pods. We took a demo pod home. Alex wore it for 3 days. She never complained about it and when we pulled it off, it was slightly red but didn't seem to cause her any rash or anything.  So as of now, I'm leaning toward the OmniPod - it would mean no tubing and I really like that! It would mean she gets to keep her test strip brand and we all like that! But...I could still be swayed...we plan to attend the class and want to trial both OmniPod and either Animas or Medtronic with tubing. We want to be sure it is a good fit no matter what we select and wearing a demo pod with no insertion could be completely different then the real trial with saline. That brings me to our next concern...cost...

I'm happy for insurance but can I just say that I am so disgusted by the cost of things. It seems like every time we think we are getting a grip on costs, we get a few bricks thrown our way. We managed to pay off our medical bills from Alex's hospital stay with Joe's recent bonus and some serious tightening of the belts around here. I've saved about half of the cost of diabetes camp. We've made the kids quit all activities except scouts. And I was having hopes of putting them back into a few things over the summer. And then I got the phone call about pump costs. And we're back to square one. Because, a pump is considered DME (Durable Medical Equipment). Our plan covers cost AFTER a yearly $2000 deductible and only 70%  of supplies after the deductible is met. The bottom line is that we will be paying about $2000 a year EVERY year for her pump supplies. Up front, we'll be paying $1500 to cover the initial purchase and 3 months of supplies. That is in addition to her prescriptions which costs us about $200 a month. That's in addition to doctor visits at the cost of $50 a visit. That's in addition to the mental health counseling attended every other week at a cost of $50 a visit. I don't understand why an insulin pump isn't covered better for a diabetic, a type 1 diabetic child no less. Everything we've read proves a pump will help provide better control and a more normal life for her. Even when I WANT to feel like diabetes hasn't take over our lives....it really has...it has impacted everything and plays a part in every decision we make these days. I hate it. I hate it. I hate it. I want to send Alex to horseback riding lessons. I want to take her to the American Girl store. I want to send her to a few day camps this summer. I want to sign up for the gym. I want to take my son to Legoland. I want to send him back to figure skating lessons. I want to get a job outside the home without wondering what I would do with my diabetic daughter for daycare or for the times which seem to creep up often when she is out of school or going to a doctor's appointment making me an unreliable employee! So here I am...at home...looking at insulin pumps and insertion needle device things to stick in my daughter's body every 3 days and wondering how to pay for it all and thinking our summer is going to be filled with pump education and not a lot else. At least we have the pool ;-)

And yes, yes, I know I'm wallowing in self pity. I know it could be worse. I know we should be fortunate for alot of things. And, I am. I promise. This is just me...getting what I feel out in writing because it helps me keep my eye on the prize and keeps me from sounding and acting like a 2 year old throwing a tantrum in real life. This is me being and thinking what I really think in the heat of the moment. It's not the most mature. It's not the most rational. It's not the most selfless. But it's honest. And if I write it and get it out, it's what helps me get past it and move on.

1 comment:

  1. Self Pity is okay sometimes! It's hard dealing with all of this, the money thing is obsurd. I had to quit my job too and lots of belt tighting around here. Sometimes I find myself asking, why oh why me, why us?

    We have the Animas pump and I love the remote option and the waterproofness. We were only given the option of Animas and Medtronic (we were on AHCCCS at the time, I think those were the 2 they covered). But I am now curious about the OmniPod, I think the no-tubing there would be a plus and it has a remote too, right?

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