To Heidi

[Guest guest]

Dear Heidi,

Thank's for the " gentle reminder, " about deleting the previous post. I'm

sorry that I had forgotten this from three years ago. I will try to always

remember so the archieves aren't too cluttered. I still can't get this old

2000 i-Mac cpt. to delkete blocks of text, but I will just hit the delete

key and erase it the old way.

I hope that your trip to ton was a great one. When is the

wedding? I hope that you are feeling reasonably well, and it's always a

pleasure to read your posts. You are a great state rep. for PAI!! :-)

your PAI pal,

Henry

[Guest guest]

Dear Heidi,

You would think 350 pages of documentation would be enough. If only

you could pay your case worker a visit & hurl all over him/her. I

don't know how much mine was b/c everything was done by phone, having

docs offices send cc of my records directly to SSI dept. Plus, I was

in the hospital so much that my friends were helping me. With out

them I would probably still be trying to get my info together.

You're in my heart, & I hope God blesses you with a quick approval

letter!

Huge hugs!

Deanna Tubb

New Mexico PAI Rep

[Guest guest]

Heidi, That's really sad the attorney didn't include the information

that was so pertinent to your case. Good luck on Monday talking with

them. Let us know what happens. Tammy

[Guest guest]

I'll keep you in my prayers, Heidi. I'm on a lot of percocet and

quite frankly I can't think of any employer who would want an

employee showing up on so much pain medication. Did you know you can

also include employee records as part of your review. Your personnel

file might have a gold nugget in it to help sway the judge. Good

luck. Tammy

[Guest guest]

Hi Heidi,

First I would like to say how sorry I am that you got denied you your social

security. If anyone deserves it, it is surely you, with everything that you

have been through. I would think that your brittle diabetes, would

certainly have a positive bearing on it for a positive decision. You are

certainly right about having all your medical records and reports in

ordered. I think that it also a good place to have your family write on how

it have affected your and theirs lives.

It can't hurt. You are right when you say, you certainly didn't think you

would be at the place where you are now, with all the years you have been

married and with your children growing up. I sure in the back of your mind,

you can't help be thinking on how you'll be feeling for your daughter

wedding. I worried so much, when my youngest daughter got married

in 99, that I would end up in the hospital or her husband dad would end up

in the hospital, due to his very bad heart condition. He is on disability

with only living with 5% of his heart functioning.

So both my daughter and her Husband are constantly worrying about one

or both of us all the time.

Those poor kids, they are so great about visiting in the hospital.

Sometimes I think it second nature to them to be at the hospital. They

never complain and is very good about visiting me along with his Dad

too. Well, I was so worried about her Wedding, and we both did make it to

the Wedding. We had like 300 people invited, which is consider a large

Wedding for the area we live in, that there was no way we could have

cancelled it if one of us was in the hospital. Well, about 2 weeks after

her Wedding, I had a major attack and I was so out of it, all I would do

was cry in the hospital, thinking I was missing her Wedding, that they

finally had to bring in Wedding pictures to show me they were married and I

did make it to her Wedding, because they showed me with her at the Wedding,

then I seemed to settle down knowing that I did make it to her wedding. I

think one of the worse things about this dreaded disease, is that we really

can't plan for anything. Everything we do, depends on how we are feeling

each and everyday. I did go out to lunch with some friends today, even

though I was having a rough day and really didn't want to cancel and miss

seeing them for another month. So I did go and I sat there staring at the

menu wondering what to try to eat so no one would know that I wasn't ok. So

I order a Senior Citizen portion of French toast and only could eat about

half and my friends finally notice I wasn't eating much and they ask me if I

was ok and I did tell them that my stomach was acting up and I was having a

flare-up, so I really couldn't eat very much. They were very nice about it,

but it did make me feel bad. I had to cancel out on our lunch date in

January due to my Jaw locking up from my TMJ flaring up and I could open up

my mouth for a few days and all I could do was eat applesauce and soft stuff

like that, so I decided now to go to lunch that month, so I didn't want to

cancel today again.

They all went to lunch in January when I couldn't make it and they all sign

and sent me a Get Well card, which was very sweet of them. It made me feel

good and bad at the same time. I guess I felt bad, because I had to cancel.

Well getting back to what I was trying to said and not write a book again,

is I under stand what you said when you said you are not at the placed in

your life where you though you would be. This coming November Ed and I will

be married 35 years and it now our time to do what we want to do, the girls

are grown up and on their own so I thought this was our time to do times

together and enjoy life, but everything depends on how I'm feeling, and it's

hard to say that we have had to come to that place in out lives at such are

fairly early age. I only 54 and I know your even younger. Before this

happen to me 14 years ago, I wouldn't have ever guess at this age I would be

take it one day at a time. I didn't think that would happen to my late 70's

or even 80's. I guess I have to be thankful for the good days and like you

said in your very nice response to me , try and not get too stress out over

all the family illness. Well, my daughter said that bad things come in

3's, so hopefully no one else in the family will developed cancer, at least

I hope not for a very long time. I think the reason, I not feeling very

good this month and in all lot of pain is because I have been so worried

about Ed. I think my stress level has just hit a new all time high. Someday

I think I'm just on auto-pilot or maybe the energizer bunny, I just keep

going and going ,on and on. Maybe this is a good thing, because if I slow

down enough for me, I would probably fall apart. But I'm happy to report

that he doing very good. Today 2 hours after lunch his sugar was the best

yet, it was only 92, so I think the medicine is helping and he is really

watching what he eats and most of all what he drinks. He was a very heavy

PEPSI drinker, not diet either. The full leaded and high sugar kind and he

hasn't had a Pepsi in 4 weeks now. All he drinks is Diet Cherry Coke. He

like how it taste and he says it doesn't leave you with the after taste some

diet drink leave you with. I do drink it too. But it is kind if hard to

find up here. All they sell it in is 12 pack cans.

Tomorrow is Ed birthday and he'll be a Senior Citizen in some places.

He'll be 55. I having both mothers and both girls and my son-in-law for

dinner. I fixing his favorite chicken dinner with all the trimmings. It

'so the kind of dinner that seems to take all day and when you get done.

every pot and pan in the house is dirty. Thanks heavens, for a dishwasher.

But at least it will make him happy. I hope everyone makes it and we don't

have to postpone it to Thursday, because Winter up in the wonderful North,

just doesn't want to give up this year, as they are predicting one more

snowstorm with up to 6 inches of Snow. I so happy that Saturday is the

first day of Spring. I have heard that spring has already arrived in SC.

You lucky people, to have nice weather. I just didn't want you all to

think I have been ignoring you all, it's just that family illness and a few

other problems have taken over my life lately. I did go out to 's

house and stay with her at night from February 29-March 4, as her husband

was out of town in Baltimore on a Business trip. She works all day, so I

was just there with her at night and we did have a very nice " Girl

Time " ,together. We both enjoyed it very much. It was so nice, just

spending time with her and me alone. I didn't realize how much I have miss

it. She called today and said that she was glad her husband came home, but

told me how much she enjoyed spending time with just me. That made my day.

Thanks heavens I have both of my girls and Ed, too. They are how I really

get thought this dreaded disease, by all their caring and support. I hope

your doing well and most of all want to thank you for your very nice

response to my a-mail. It's nice to know that you are missed. Thank you ,

so much.

Take Care,

Louie in WV

Eve

Re: to Tammy

> Tammy wrote:

> <My sister-in-law told her about my dad dying of pancreatic cancer and

> brother being hospitalized with acute pancreatitis. When I first heard

about

> CP, my entire life made sense. I've always been the type who gets bad

> stomache aches and would throw up all the time. I've had the pain in my

> stomach, like I have now, more than 20 years ago.>

>

>

>

> Tammy,

>

> >From the sounds of it, I would suspect heriditary pancreatitis, as well.

Pappas

> will get to the bottom of all of this, I'm sure. And if he doesn't, keep

looking

> until you find a specialist that will......you GO girl!

>

> In regard to my SSDI denial, I plan to go before a judge for a hearing.

The

> attorney's assistant called and we discussed my denial and the

discrepancies

> in my SSDI review, i.e; the lack of hospitalization records for my October

> hospital stay, no records reviewed from my surgeon who saw me during and

> after this attack, plus now the addition of another doctor (Pain

Management)

> and the additional narcotics that prohibit me from driving, much less

working.

> Although the attorney knew about that hospitalization and the doctors, the

> assistant wouldn't comment specifically whether it was their failure or

the

> SSDI's failure that they weren't reviewed. I didn't really like that too

much, but

> it's too late now.

>

> He did say that one thing that's good about the hearing before the judge,

is

> that we can determine exactly what records the judge sees, and what can be

> left out. So naturally, our approach will be to show all the

hospitalizations,

> doctor's reports of my permanently deteriorating condition, affidavits

from my

> GI, spouse and a relative about my limitations, and the fact that I'm on

such a

> high dose of narcotics 24/7 that driving and working just wouldn't be

possible.

> I don't know how the SSDI could presume that anyone taking this amount of

> narcotics would be safe to drive every day, it seems like they totally

> overlooked my med page.

>

> My husband got all excited about writing an affidavit about my

condition....he

> said that for sure, he had a lot to say about what's happened to me these

> past four years! Now I'm really curious to see his analysis, in his own

words,

> of how this has affected us, the family and me. If he's really honest, I

may be

> able to find out enough information to help him deal with it better, too.

I think

> he's been fantastically supportive and uncomplaining....but you know that

> geing a caregiver for someone like us with all these problems must be so

> taxing. It's just so much NOT like what we imagined for ourselves and our

> marriage at this point in our lives. Everything has changed so much in

our

> lifestyle and activities, just because of these illnesses of mine, that I

know he

> must feel some resentment or sense of loss - he would have to! But he

never

> complains and is always so attentive to me. He does all the shopping and

> errands during the three days a week that he's home, plus now a lot of the

> cooking.....running around like an unleashed monkey, that I just know that

> deep inside he must have some really strong opinions about this.

>

> Yikes, I didn't mean to vent so much...but Yes, M'am, I am going to get

really

> aggressive about this hearing. The only problem now is the wait, the

> assistant said that it takes at least 6-8 months to get a hearing in South

> Carolina. But I guess that will just give us more time to collect really

thorough

> evidence of all my problems and limitations.

>

> Thanks for listening. Do let us know how it all goes at Duke on Monday.

>

> With hope and prayers,

> Heidi

>

> Heidi H. Griffeth

> South Carolina

> SC & SE Regional Rep.

> PAI, Intl.

>

> Note: All comments or advice are personal opinion only, and

> should never be substituted for consultation with a medical

> professional.

>

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