WELL THIS HAS BEEN A CRAZY WEEK.
1. turned down for ssi again
2. pyper has spilled milk about 4 times
3. trinity and her vomiting.
I HAVE TO SAY THE DEVIL HAS BEEN WORKING HARD TO UPSET ME THIS WEEK. WHEN I GOT THE LETTER ABOUT BEING TURNED DOWN FOR SSI AND READING THE INFORMATION ON THE LETTER, I STARTED TO CRY. IT SAYS THAT CF DOESNT RELATE IN DEATH. DO THEY REALIZE HOW MANY HAVE DIED FROM THIS HORRIBLE DISEASE. I CRIED AND GOT SO UPSET B/C I KNOW SO MANY PEOPLE WHO HAVE THIS AND THERE CHILD HAS ADD/ADHD OR ASTHMA OR THEY HAVE MENTAL ISSUES.
R U KIDDING ME!!!!!!!!!!!!!!!!!!!!!
MY YOUNGEST PYPER HAS ASTHMA AND CYSTIC FIBROSIS. I HAVE TO KEEP TELLING MYSELF I AM A GOOD PERSON AND THAT GOD HAS A PLAN FOR US BUT I GOT SO MAD. WHY DON'T WE DESERVE IT, WHY CAN'T MY GIRLS GET MEDICAID. I DON'T WANT ANY MONEY I JUST WOULD LIKE TO HAVE SECONDARY INSURANCE COVERAGE. SOMEBODY TELL ME THAT OUR GOVERNMENT AND OUR SYSTEM ARE RIGHT. HA, ON THAT. U HAVE TO LIE, CHEAT, STEAL, AND BE A WORTHLESS PARENT TO GET ANY HELP. IT JUST DOESNT MAKE ANY SENSE. I DON'T WANT PEOPLE TO THINK I AM TALKING ABOUT PEOPLE WHO GET HELP. I UNDERSTAND, IF YOU ARE A SINGLE MOTHER, OR FATHER AND NEED HELP. I GET THAT. IT JUST MAKES ME MAD THE DIAGNOSIS THAT GET HELP AND HOW CAN THEY OK THAT AND NOT CF.
THE GIRLS CULTURES CAME BACK WITH JUST STAPH ON THEM. I WAS SO EXCITED I WANTED TO CRY. I WAS SO WORRIED ABOUT PYPER AND HER PSEUDOMONAS. THANK YOU GOD. I AM SO GRATEFUL FOR THAT. I MIGHT GET DOWN IN THE DUMPS B/C ALL THIS OTHER STUFF BUT GOD KNOW, I GIVE ALL THE GLORY TO HIM. STAY WITH MY GIRLS... TRINITY IS HAVING SOME ISSUES WITH WANTING TO VOMIT EARLY IN THE MORNING. I WONDER IF AFTER SHE SLEEPS AND GETS UP, IF ALL THE MUCOUS WANTS TO COME OUT. IT IS ALWAYS A LOT OF MUCOUS. AFTER SHE VOMITS SHE USUALLY FEELS BETTER.
WELL WE TRIED TO REFINANCE THE CAR, AND THEY APPROVED US, SO I GUESS THAT MEANS WE ARE STILL IN GOOD STANDINGS WITH OUR CREDIT BUT THEY WANTED 2500 DOLLARS DOWN TO DO IT AND IT WAS ONLY GOING TO LOWER MY PAYMENT BY ABOUT 130 DOLLARS. THAT IS GOOD, BUT I DONT WANT TO START OVER. WE ARE TRYING SO HARD TO DO EVERYTHING WE CAN BUT THINGS JUST ARENT WORKING OUT. WHEN I WORKED, THINGS WERE GOOD. RIGHT NOW, WITH JUST ONE INCOME IT IS HARD. I FEEL LIKE WE DO NOTHING. WE DON'T GO OUT, WE DON'T GO TO THE MOVIES, WE DON'T DO ANYTHING. WE ALWAYS STAY HOME. I LOVE BEING HOME BUT SOMETIMES IT WOULD BE NICE TO REWARD OURSELVES FOR SOMETHING. I ALMOST WANT TO LOOK AT OUR FAMILY AND SAY WE ARE IN DEBT, MY HUBBY IS DOING EVERYTHING HE CAN AND I DON'T WANT TO HERE HOW WE SHOULD HAVE BEEN DOING THIS AND THAT. WE CAN'T SAVE, WE CAN'T HAVE A HUGE SAVINGS ACCOUNT. WE SCREWED UP. MY HUBBY BLESS HIS HEART, SAID MARTIE I CAN'T TELL MY FAMILY THAT. BOY, MY FAMILY KNOWS WE ARE DOING EVERYTHING WE CAN.
GREG, COMES FROM A FAMILY, WERE U DONT GET IN DEBT, YOU PAY EVERYTHING ON TIME, WHICH WE DO, AND YOU SAVE.. I FEEL FOR GREG. HE IS SCARED TO DEATH TO LOOK AT HIS PARENTS AND TELL THEM OUR SITUATION. I COULDNT LIVE THAT WAY. I AM A OPEN BOOK, MY DAD CAN READ IT ON MY FACE IF SOMETHING IS WRONG OR IF I AM DOWN. I WOULDNT SAY IT, BUT MY FAMILY KNOWS. EVERYBODY JUST KEEP PRAYING FOR US. WE ARE GOING TO BE OK B/C I HAVE THE MOST AMAZING GOD ON MY SIDE AND THE MOST AMAZING HUSBAND AND FAMILY AND KIDS. GOD IS GOOD.
SOMETIMES I FEEL LIKE I SHOULD GO BACK TO WORK AND THEN I THINK ABOUT MY GIRLS AND HOW WELL THEY HAVE DONE WITH ME AT HOME. GREG AND ME FEEL THIS IS JUST THE RIGHT THING TO DO. GOD KEEP ME HOME WITH OUR BABIES AND PLEASE KEEP THEM DOING GOOD. I FEEL MY FACEBOOK AND BLOG ARE ME TALKING TO GOD. I GUESS MINE ARE BLOGS TO GOD AND FACEBOOK TO GOD. LORD WATCH OVER US DURING OUR HARD TIMES.
MARTIE (ONE PROUD MOM OF TRINS AND PYPER)
We also went to a one parents income in order for me to say home, and yep it is tough.. we had to let everything go back ie vehicles etc... and it is a very humbling expierience but in the end you have to remind yourself that it doesnt matter what any one else thinks, this is a tough and expensive disease and and being home with your girls pays big time.... Lane is in school but now I dont worry about choosing between work and him (that was always tough) and he doesnt have to go to daycare which helps a ton, he has been alot healthier since we took him out... Tell your husband to go easy on himself, it is hard for my hubby too, they work hard in this economy to provide for very sick kids... oh and apply again and again to SSI, we dont quality because of money (which is insane cuz we are poor as dirt lol lol) but if you passed that phase keep trying girl they say it takes a while... :)
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