Re: Debby and Jerri

[Guest guest]

Hey! Thanks for the welcome! It's not me that's got it, it's my Husband, but

he doesn't type very well and I'm kinda his secretary/liaison person. It's very

comforting to know that this group is out there!! Certainly, if we can be of

help to anyone by sharing knowledge or a place to sleep for a few days, we want

to do that!

We'd Love to get together with the " Southern Contingent " , provided we do it

without spending much money! Our financial challenges began when we got married

2.5 years ago and haven't let up much. Our biggest miracle is that I was

re-hired (full-time - I had been PRN for 10 years while my kids were little) in

the Emory University Hospital Pharmacy just 2 weeks before Gregg had to come to

the ER with hydrocephalus and stay in ICU for 7 days and then have a VP shunt

put in. I Love these folks I work with, and Gregg hasn't been able to work

since March, so I'm REAL thankful for a regular paycheck (though it isn't big

enough for our obligations)of any kind since we didn't have insurance for more

than 2 years and no regular income to speak of (We got real intimate with

charity organizations!).

We have other challenges too, like being a " blended family " from vastly

different backgrounds, but the truth is, we Love each other very much and this

situation is breaking my Heart (now that I've finally, truly given my Heart

fully, he's dying...). I know it's not hopeless, mind you, but I guess you

probably know what I mean.

I have had to be very aggressive in advocating for my Husband. Without my

fighting Spirit, he would have given up and washed his hands of the " Healthcare

Industry " long ago and come home to die without any " interference " . We are,

right now, waiting for Aetna to answer Dr. Stern's expidited appeal (supposed to

have an answer in 72 hours and it was filed on the 9th) of their denial for the

additional tests Gregg needs to confirm (or not) his diagnosis. Aetna's Medical

Director has decided that it doesn't need to be expidited (I throw up my hands).

Dr. Stern's Clinical Research Nurse, Betty Shipp, told me, today, that Dr. Stern

will be back on Monday and he may decide to call them himself and try to explain

the need. We shall see. In the meantime, Gregg called me today to tell me that

all of a sudden this afternoon, his hands started tremoring... He had a pretty

good day with some energy on Tuesday, but the last couple, he's felt fatigued

and yesterday he was running a low-grade fever.

Anyway, I'm just glad y'all are here for us! Please let us know if we can help

too.

Love,

Jeri

[Guest guest]

WOW, that is awesome.. and your hubby is very lucky to have you. I was a LPN for 25 years if not for that and this group, I would have already given up.... I've been sick since November 2001 where I was sent home one morning for not being able to function at work...due to tremors and disorientation... which was a sudden onset... I've not been able to work since..and actually I am having a hard time walking and even standing and its getting worse.. I have the tremors too, and here lately I've been waking up from my nap or in the mornings with shaking tremors all over...I have started having this overwelming fatique that is unbareable at times.... Pain is another issue, bone and muscle pain is a very big issue these days... Thank God my 13 yr old son likes frozen pizza's....cooking is out of the question the last few weeks...and even before that I had to sit on a stool to cook and or wash the dishes up... I hate it...

For the most part we all have money issues to.. I did recieve my disability in March of this year,but I went a year and six months before I recieved anything...and I'm single... with a teenager... I don't know how I made it.. but i did.. I only recieve half my salary, so funds are very strict here as well... maybe we can find some general place in the middle and do a picnic lunch.. we have friends from Florida, Alabama, Georgia, and several in Tennessee...Oh yeah.. I'd never forget Sandy in Kentucky...

Maybe before it gets to cold... this fall .. we'll see.. anyway.. thanks for your compassion with your husbands illness, he's lucky... and keep fighting....

Big hugs,

-- Re: Debby and Jerri

Hey! Thanks for the welcome! It's not me that's got it, it's my Husband, but he doesn't type very well and I'm kinda his secretary/liaison person. It's very comforting to know that this group is out there!! Certainly, if we can be of help to anyone by sharing knowledge or a place to sleep for a few days, we want to do that!

We'd Love to get together with the "Southern Contingent", provided we do it without spending much money! Our financial challenges began when we got married 2.5 years ago and haven't let up much. Our biggest miracle is that I was re-hired (full-time - I had been PRN for 10 years while my kids were little) in the Emory University Hospital Pharmacy just 2 weeks before Gregg had to come to the ER with hydrocephalus and stay in ICU for 7 days and then have a VP shunt put in. I Love these folks I work with, and Gregg hasn't been able to work since March, so I'm REAL thankful for a regular paycheck (though it isn't big enough for our obligations)of any kind since we didn't have insurance for more than 2 years and no regular income to speak of (We got real intimate with charity organizations!).

We have other challenges too, like being a "blended family" from vastly different backgrounds, but the truth is, we Love each other very much and this situation is breaking my Heart (now that I've finally, truly given my Heart fully, he's dying...). I know it's not hopeless, mind you, but I guess you probably know what I mean.

I have had to be very aggressive in advocating for my Husband. Without my fighting Spirit, he would have given up and washed his hands of the "Healthcare Industry" long ago and come home to die without any "interference". We are, right now, waiting for Aetna to answer Dr. Stern's expidited appeal (supposed to have an answer in 72 hours and it was filed on the 9th) of their denial for the additional tests Gregg needs to confirm (or not) his diagnosis. Aetna's Medical Director has decided that it doesn't need to be expidited (I throw up my hands). Dr. Stern's Clinical Research Nurse, Betty Shipp, told me, today, that Dr. Stern will be back on Monday and he may decide to call them himself and try to explain the need. We shall see. In the meantime, Gregg called me today to tell me that all of a sudden this afternoon, his hands started tremoring... He had a pretty good day with some energy on Tuesday, but the last couple, he's felt fatigued and yesterday he was running a low-grade fever.

Anyway, I'm just glad y'all are here for us! Please let us know if we can help too.

Love,

Jeri

[Guest guest]

Love and hugs to you too! Gregg had tremors in his hands yesterday, suddenly,

which eased off as the day wore on. He has been very fatigued too. For every

day that he has a reasonable amount of energy and a reasonable lessening of

pain, he seems to have 3-4 bad ones. Last night, as we were falling asleep - he

was curled around me and I couldn't help crying. Yesterday, he also had some

headaches at the base of his skull - like the ones he had with the

hydrocephalus, and he's been running a low-grade fever the last two days.

By issueing each child a set of dishes and making a rule that when we eat, they

bring their OWN dishes into the kitchen and eat off them and then wash them PLUS

at least 2 others (cooking or serving pieces) AND committing to finish washing

whatever's left after they are in bed, I kept the kitchen clean for about 3

months. However, my inner resources have been pushed closer to their limits,

and I've let the kitchen go to Hell again. Gregg tries to do some dishes every

day, but it's so difficult for him to do anything at all... And he feels guilty

that he's not helping out too - not working is driving him crazy but how can he

- there's no guarenteeing, on any given day, that he'll be able to. He wanted

to go to Real Estate School, and if he's granted disability down the line, the

State will pay for it. With the short-term memory loss, I'm not sure how that

will work out either, though.

Honey, I can only imagine how hard this must be with a teenage son and no

partner to support you!! No matter how bad off you think you are, there's

always folks worse off - I've learned that through experience over the last 2.5

years!

I'm thankful for Friends, like you, and for this group as a whole. I hope we can

get together sometime this fall!

Love,

Jeri