Re: Re: disability claim-how to

December 15, 2008

Barby, I am so happy that Bobby Glen saw the doctor today and he has encouraged

him to go ahead with the disability claim. I feel encouraged that this doctor

is at least moving forward and trying to come up with a plan to treat Bobby

Glen. I know all too well how it feels when the bills are piling up and he's

not able to work. It is so hard a man to just sit back and let that happen. It

is so devastating to their self esteem. Some of the worst times in our

relationship was during that adjustment phase when Terry was having to accept

that he would have to be on disability for the remainder of his life. Once he

accepted that, a sort of depression set in, but it was better every day

afterwards until he was almost back to his old self again. Of course, dealing

with the pain and all the meds changes anyone and he will never again be who he

was before the accident. I guess what I'm going to long way around to say is

this, be patient with him

and understand what a sacrifice he is making by giving in to file for the

disability. It's a big step and he needs your love and encouragement to make it

through it. I know you will be there for him cause I know how much you love and

adore him. No matter what happens from here forward, always encourage him to go

ahead with the disability application. One thing that will get him disapproved

by SSDI is starting and then stopping and then re-starting again. Once the

process gets going, stick with it. He will get approved. While you're waiting,

go to the agencies in your county for help. People like the local welfare aid

office to sign up for assistance, as well as for food stamps. The utility

company may be able to help with assistance on utility bills. Talk to your

creditors and explain your circumstances. Many of them will be willing to work

with you about your monthly obligations in order to help you from going into

arrears on your

payments. These are all things that I have done in the past in order to help

us make it. You have to swallow your pride and be humble, but it is a good

exercise to help us remember how blessed we really are just to still have our

husbands with us. Nothing is more important and no sacrifice is too great in

order to keep them with us as long as we can. I love you dearly and I'm praying

for you and for Bobby Glen and the road ahead of you. Know you always have

someone to turn to if you need an ear.

Love and hugs........

Diane

________________________________

To: livercirrhosissupport

Sent: Monday, December 15, 2008 7:06:21 PM

Subject: Re: disability claim-how to

thank you bobby yes it helps,we went to the hep dr. today bobby glen

goes to a nuerologist as soon as they call us with an appt. hes

concerned with his dizzy spells and what his job consists of working

of ladders, he said we will need this to apply for disability which

he suggests, he is contacting the dr. at vandy to see how to proceed

with treatment ,he too doesnt understand the illect drug crap, we

need to find a pain dr. in our area also he will be referring us i

guess, bobby glenn will have a scope for bleeds and an ultra sound on

friday, he was concerned with b.g. waiting so long to come back to

him but understood the going back and forth with doing anything as

aposed to doing nothing.he says b.g will need a new liver no

questions asked, he also said the hep. treatment could decompensate

him so there for hes consulting with the vandy dr. as to that also.

its all so hard to understand. but at leasdt we are moving forward

again ,till b.g changes his mind again. he was explaining to the dr.

how the med. bills are piling up and hes laid off right now, so

hopefully he will help us with the disability ins. phew its alot to

remember so tonight i start my book,i am not sure how to make one

except to right everything down every dr. says. again thank you so

much ,much love barby

> > >

> > > Thank you all for your many prayers. Sharon has received the

> answer

> > from her long term disability insurance company. The answer is

yes,

> > approved. For those of you who are new here, my wife has Chiari

> > malformation, and Ehlers Danlos syndrome. EDS is the underlying

> cause

> > of the Chiari, but Chiari is a condition where part of the brain

> > herniates into the spinal canal. The hole in your head is called

> > the " foramen magnum " , (Latin for " big hole " ) and her foramen

magnum

> > had to be enlarged in June of 2007. She had a surgery to

disconnect

> > her spinal cord from it's ligament in May, 2008. There was a

total

> of

> > 3 surgeries in 3 years. They did not have the desired effect. The

> > posterior fossa decompression, as the 2006 surgery was called was

> > made into a movie. The movie is here-

> > >

> > > part one- http://www.youtube. com/watch? v=6xZXEjliyYY

> > >

> > > part two- http://www.youtube. com/watch? v=AK-

> > VJDlGyto & feature= related

> > >

> > > part three- http://www.youtube. com/watch?

> > v=KELl6FevEbo & feature=related

> > >

> > > She says that when your husband has end stage liver disease ,

and

> > that is a minor problem, your life is pretty screwed up.

> > > We had already started packing our house. She was supposed to

get

> > this in June.

> > > We can breath a temporary sigh of relief. Thank you all for

your

> > prayers and support. Love, Bobby

> > >

> > > long life, old age, everything good-Apache prayer

> > >

December 15, 2008

It helps also to leave nothing out. A person really has to tell about every

single thing, even though you feel like you are being a big baby. That's how I

felt. My family doctor made light of my pain, and I had to call her on it. She

actually wrote in my record that " Now patient knows he has an enlarged spleen,

he has upper left quadrant pain " . I went back in the record and showed her where

I had complained to her severe upper left quadrant pain. She was embarrassed.

She quickly corrected the record. After that, I wrote a list that looked like

this, in fact because this is the list-

Bobby has the following symptoms and signs of end stage

liver disease as detailed by the National Library of

Medicine

and the National Institutes of Health

------------------------------------------------------

pain in the right upper quadrant

fatigue

weakness

lethargy

exaustion

nausea

itching-pruritus

painful, enlarged breasts (gynocomastia)

pale stools

difficult to control nosebleeds

bloody stools

PORTAL HYPERTENSION

upper left quadrant pain-splenomegaly

Hepatic encephalopathy-- (all these have increased in the last 6 months)

inversion of sleep pattern

severe clumsiness at times (ataxia)

lack of fine motor skills

tremors

lessened ability to perform mental tasks

shortened attention span

easily agitated

euphoria

short term memory loss

fluttery vision (nystagmus)

visual disturbances

hallucinations

communication problems

Irrational behavior

I asked her and all of my doctors to add this list to my medical record so that

there was no doubt as to what I am saying I am having as a symptom. There is an

urge, and I don't really know why, but there is an urge for doctors to say " I

don't think that is related to your liver. " Then they say " if that were related

to your liver, all of my liver patients would have it " , then they say almost in

the same breath " every one is different, not every one experiences the same

symptoms. " . ???!?!?!?!?!

At least this way, the judge could look at ALL of my records, from the

pulmonologist, hepatologist, primary care, gastro-enterologist, and pain doctor

and see the same list.

________________________________

To: livercirrhosissupport

Sent: Monday, December 15, 2008 11:11:16 PM

Subject: Re: Re: disability claim-how to