Justin's Story

Sunday, April 27, 2014

Tired, exhausted, fatigued, drained, burned out....yup that sums it up lately!

Most of the time diabetes it just background noise in our lives, we deal with each number and move on.  I'm sure its a combination of things making me feel this way.  I found out I have a herniated disk in my neck at the beginning of April, I had been in awful pain and wasn't able to do anything, including help care for Justin.  I've been going to physical therapy and that seems to be helping, I'm functional again, but being super careful to not aggravate it again.  

We were supposed to go to the endo at the beginning of March, but we cancelled because I got Justin on to a plan offered for kids by the state.  Well when I spoke to our "RN" case manager at that time I was told that he would have an appointment with the new endo in either April or May.  I put RN in quotes because I'm not sure they really are nurses since I say he has Type 1 Diabetes, and I'm asked every time what medication he is on.  As a nurse you should at least know that Type 1 is insulin dependent, I'm not asking a lot here!  So were now at the end of April and I've left at least 5 messages regarding when his appt will be, and that were running low on supplies.  No call back!  So I was talking with another friend who is on another plan offered through the state, so I decide I want to switch then we can go back to the endo we were seeing.  I call, tell them what I want to do, she puts me on hold and comes back really quick....says I have to call the plan hes on not the main number.  Which means calling the same number that won't return my calls!!!!!!!!!!!!! I am beyond frustrated.  I have paid 3 monthly premiums to them and have yet to see a dr. or get prescriptions.  I'm still buying strips, syringes, pen needles, and now were really close to running out of one of his insulins and its about $150 for that.  This is beyond ridiculous now.  I will be calling first thing tomorrow morning, again.  So that has been a huge weight on me lately just worrying about getting everything.  I know he needs dose changes and I've been trying to adjust a little bit at a time, numbers have been crazy either way high or he's low, I'm just done.  He's been ready for a pump, but since we haven't seen the new dr who knows when that will be.  

I also feel lately like I'm having an overload of diabetes stuff.....I joined some groups on facebook, and while I love the support.  I get depressed reading all the newbies posts it just makes me angry and reminds me daily of how awful it was at first.  Don't get me wrong I love social media and the connections I've made.  Just seems like lately things are getting to me a lot more than usual.  

Lets take yesterday for example: 
started the morning at 256
before lunch low 59
ate lunch checked before i gave insulin for a cookie he was at 108
still going up from lunch i dosed for the cookie
get home 356...wtf diabetes wtf

It's been like this a lot more lately and its beyond frustrating.  Today was much better but we were outside and walking around a lot today.  

I get mad that this is his life, I hate it and it makes me sad and so angry at times. 
I find myself constantly worrying about his teenage years, and beyond.  I see older kids at the mall or wherever and I think about him and while I know he will be fine, I hate that he has to deal extra thing that his friends don't have to worry about.  I worry if he'll have supportive friends that will learn about it and understand what he's dealing with so they can help if needed.   

 I get to feeling like this on and off since diagnosis....It goes away but always finds a way back to me.  I can handle the medical side of diabetes, but the emotional side just exhausts me.  As if raising a kid isn't hard enough.....

2 comments:

  1. Don't know what strips or pen needles you use, but since Michelle switched to Omnipod we have extra pen needles and strips for accucheck Nano. I could send you some if you need them.

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    1. That would be awesome Carla!!! I'll message you with my address :)

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