sort of OT- our disability saga

[Guest guest]

My husband last worked in 1990. He was a computer specialist in Chicago for

very upscale companies. He was 40 years old, we had 2 kids, one 18 months and

one just born. I had finally just stopped working, for the first time in my

life, and we had just bought a starter home. It was unclear WHY he lost his job

for awhile.we did not understand- but it had to do with some personality

changees in my husband - little things. We had private long term income

protetion disability insurance, but- at first we did not realize my husband was

ill. Gradually his symptoms worsened and eventually he wound up catatonic. The

psch hospital signed him up for social security and I made a claim on his

private disability coverage. Horror- we found out then that the private

disability co had been in bankruptcy proceedings- we got not a penny! ACK. The

social security came thru and I went back to waiting tables. What a nightmare.

(most waitresses here do not have insurance thru work)

It took a few years in the hospital with him for them to decide he had delayed

onset combat PTSD (He was a Marine and did 3 years in Nam)

We began the long drawn out process for VA benefits, What an adjustment to go

from his income to what he got for soc sec!!!! It was less than 25% of his

pay!!!!

It took 10 years fighting with the VA to get him his veterans benefits. In the

meantime we found out our oldest child is profoundly mentally ill and our 3rd

child has mild cerebal palsy and seizures. I was also diagnosed with my RA.

Along the way he was diagnosed with multiple agent orange cancers- emphysema,

alzheimers. His Medicare did not cover meds- my income pushed us over the limit

for Medicaide- and it was truly a horrible struggle over the years but somehow I

held onto our house. When we bought our tiny house people kept saying oh you

could buy a much larger nicer house- Hmmmmm If we had? I never would have been

able to keep it, it was in foreclosure twice and soc sec back pay came JUST in

time the first time and a 30% VA pension came just in time the 2nd time. Sadly

my RA hit hard and heavy in my last semester of nursing school- I went to

nursing school at age 40 to finally make enough to ease our life some, HA! Oh

well, as it turns out, my husband and daughte and osn continued to get more and

more ill, and now I am here. I cannot do much physically- BUT I am here to

soothe the nitemares and hallucinations and flashbacks.....Our financila

difficulties remain, to be sure----but we have food and each other- my kids

always have mom and dad right here. and yes, finally the VA reached 100%

compensation and we now have ChampVA health care- me and the kids, and the best

part is- all our meds are finally covered. This is an enormous thing becuz my

husbands meds near $3,000 a month, my daughters at one time were $2,500 and my

sons were $800. LOL yeah, our meds cost way more than we even made- but we were

just a few $$ over the income cutoff to get Medicaide. (but thats how I found

the patients perscription drug assistance programs)

I loved working, I truly loved nursing--but maybe it just was not meant to be

after all? LOL or maybe I was to be the nurse here at home?

Hang in there, I KNOW it is so hard----living on disability is NOT easy....I

hope it does not offend if I offer prayer for those of you struggling.