Unexpected Illness and Healthcare Reform - Living with Spinal Muscular Atrophy

    

Lizzy came down with something yesterday morning. Oh my secretions like a fountain . Her nose filling up like every 5-10 minutes . She would not come off her bipap( until late last night for about an hour) . I could not even pee without hearing" NINA I NEED YOU!" Walk 2 foot away and she would set her pulse off and start yelling. It was a dandy day yesterday and last night. I am not complaining just explaining what it is like when she is sick. I know she needs me to help her but somedays/nights you feel like "okay am I the only one that lives here?" Today Paul had got home from school  and was 3 feet from her on the home computer and she yells "Nina I NEED SUCTION!" while I was in the kitchen trying to get something to eat. Okay, He knows how to suction her but would he help? Nope....... he just sat there. Then, he as usual went  upstairs to nap. "NAP .... Okay like he is the  only one that needs a darn nap!!" Lets see he went to bed around 8pm last and went to school this morning. I on the other hand had maybe 2 hours sleep last night.   UGH...... Okay come on people you can help too. When Lizzy was younger yes I did not ask for help but she is older now and when she  tells you she needs suction then by gosh Jump up, germx your hands and GO FOR IT!!! I know I am very tired today and maybe slightly crabby (okay a whole lot crabby) but you know sometimes you get really upset when you need help once in awhile and NO ONE will help. I will be busy with Lizzy and no one will answer the phone but me most of the time. Christen seems to want to help everyone else but me these days. Yes,she does have a "good heart " but come on "WHERE ARE YOUR PRIORITIES WOMAN? " I asked her that  question this morning when she ran out the door to Dawn's to watch Dawn's kids. Hey, don't get me wrong I love all my kids and grandkids dearly but when your child is sick as bad as Lizzy has been these past few days you need to stay home with them and HELP!! I never used to say a thing but these days I have been watching and paying more attention. Today Christen tried to " suck" up buying me McDonald's burritos for break fast...... I knew she was leaving. She could not even carry the cough asst down stairs. I feel like I am talkng to the wall these days because NO ONE IS LISTENING. They have learned to block me and my feelings out!!

Did you catch Dancing with the Stars last night? Wow, Buzz Aldrin was pretty good for a man of his age.
Then, OH MY Pamela Anderson..... let just say "Oh My........"

Okay, HEALTH CARE REFORM.  Okay ,Paul  and I do not have insurance we tried to get Cobra insurance after his layoff and it WAS over half of a total months unemployment check. Do we blow off the bills, house payment,groceries etc to get insurance? He lost his job a year ago and with that we lost our insurance.Is it our fault my husband lost her job of over 30 years? NO it is not.

I have been scared out of my mind because I can not afford to go to the doctor and my hands have severe pain and then going numb sometimes and more so lately. I know I need surgery for my hands(wrists) but what do you do?  I can not even afford to buy the arthritis med the doc gave me script for . Its like over 100 bucks a month. So, I deal with the pain. How long can I do this? I dont know. Paul has type 1 diabetes he has been taking less in his med to save money. That is so scary to me he would do that. I told him no matter how poor we are he needs his meds.
 Okay...... Now,  Lizzy and medicaid. I hope it does not effect her at all. According to Sara Palin they are going to have a what they call a DEATH Panel that decides who lives and dies?  What ever..... She is NUTS  and such a" trouble maker." Her and that Elisabeth on the "VIEW" are two women that need to settle down.. How dare they say they things they do and get away with it??? Come on after scaring the crap out of us all worrying about kids like Lizzy its totally false. We are not sure how it will effect Lizzy yet but I have been reassured it will not take anything away for her. We will make sure Lizzy is taken care of no matter what it takes. Elizabeth and I watch the view every day and "our Elizabeth loves Whoopie(Lizzy's favorite) and Joy but says" Elisabeth is MEAN to Whoopie and all the ladies on the "View"." Out of the mouth of a 6 year old. Elisabeth need to sit back and listen sometimes instead of pointing fingers and  stop saying such bias things about the president in my unbiased opinion.
Any way. I had to get that off my chest. I do not usually talk about my political views to my friends because you can lose friends in how you feel. I will not go on about this with anyone. Its not debatable it is now LAW.

Well , Lizzy has been on bipap today for a few hours. She keeps moving her toe and setting her pulse ox off then laughing so she is feeling better but still is pretty sick.

Oh and just a FYI if you have a DME like Apria and they are blowing you off about things you need THEN GO HIGHER up the ladder. Lizzy's Letter of Medical Need was sent in months ago for  a new bipap. Well,we found out today it has not even been submitted yet. Keep calling EVERY WEEK and do not let them rest until they do what they are supposed to do!!

Many prayer for Lizzys and all the sick kids.

" We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth