question

[Guest guest]

What do you guys do when lying down becomes a

nightmare. Somestimes even though I am so tired I

can't see straight, I stay up because if I lie down

everything goes haywire. The neuralgia will start my

feet & legs stinging like i'm in a fire ant bed and

the joint pain wakes me up off & on through the night.

I've tried making the bed more comfortable, my mama

calls it the " nest " . I have a box springs, regular

mattress, foam pad, feather matress and a quilt on top

of that (all on a twin bed)and the pressure still gets

to be too much and different joints will wake me up.

My trigeminal neuralgia is acting up and I'm back on

Lyrica, that has helped some, but my joints are nuts.

Short of hanging from a limb like a possum, i'm

running out of ideas.....besides I don't have the

backside for it, it's wide but it won't hook over a

tree limb.

Connie

--- wrote:

>

> Terri,

>

> If you don't have a recliner you should really

> invest in one. No, that

> wouldn't be selfish of you at all...your comfort is

> very important! I

> had purchased mine a year and a half before I became

> sick and I hardly

> ever used it, but after the surgical biopsy on my

> spinal cord it is the

> only place I am truly comfortable. I take a 2 hour

> nap each afternoon

> also...so you are definitely not alone. I sleep

> about 6-1/2 to 8 hours

> a night and within several hours of getting out of

> bed for the day I am

> back asleep for several hours in my recliner. I

> definitely have to divy

> up my energy...just like Darlene said...store it up

> if you know there is

> something you have to do later in the day or the

> next day.

>

> Hang in there!

>

> Hugs,

>

> in UT

>

>

>

>

> It is funny you talk about riding your recliner - I

> was thinking about

> buying one for my husband as a suprise, but I

> realized it I bought one

> it would be for me. Pretty selfish huh?

>

>

>

__________________________________________________

[Guest guest]

and with my memory I'm not sure I'd remember how to

paddle more less how to get back home........C

--- Rose wrote:

>

> we are all in the same boat.

>

> Darlene, that's a scary thought! We'll wind up

> adrift in the Pacific Ocean!

>

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender

> with the young, compassionate with the aged,

> sympathetic with the striving, and tolerant of the

> weak and the strong. Because someday in life you

> will have been all of these. "

>

> ~ Washington Carver

>

>

_________________________________________________________________

> Can you find the hidden words? Take a break and

> play Seekadoo!

>

http://club.live.com/seekadoo.aspx?icid=seek_wlmailtextlink

__________________________________________________

[Guest guest]

and with my memory I'm not sure I'd remember how to

paddle more less how to get back home........C

--- Rose wrote:

>

> we are all in the same boat.

>

> Darlene, that's a scary thought! We'll wind up

> adrift in the Pacific Ocean!

>

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender

> with the young, compassionate with the aged,

> sympathetic with the striving, and tolerant of the

> weak and the strong. Because someday in life you

> will have been all of these. "

>

> ~ Washington Carver

>

>

_________________________________________________________________

> Can you find the hidden words? Take a break and

> play Seekadoo!

>

http://club.live.com/seekadoo.aspx?icid=seek_wlmailtextlink

__________________________________________________

[Guest guest]

I end up in my husband's recliner too. It is much more comfortable that way, especially with a couple of pillows around you. Two problems though, one, I have trouble getting out of it because it's a super huge one!!! And two, during the day if I am in it, he gets all flustered because I am in "his" chair!! lol DebbieConnie Griffis wrote: What do you guys do when lying down becomes anightmare. Somestimes even though I am so tired Ican't see straight, I stay up because if I lie downeverything goes haywire. The neuralgia will start myfeet & legs stinging like i'm in a fire ant bed andthe joint pain wakes me up off & on through the night.I've tried making the bed more comfortable, my mamacalls it the "nest". I have a box springs,

regularmattress, foam pad, feather matress and a quilt on topof that (all on a twin bed)and the pressure still getsto be too much and different joints will wake me up. My trigeminal neuralgia is acting up and I'm back onLyrica, that has helped some, but my joints are nuts. Short of hanging from a limb like a possum, i'mrunning out of ideas.....besides I don't have thebackside for it, it's wide but it won't hook over atree limb.Connie --- wrote:> > Terri,> > If you don't have a recliner you should really> invest in one. No, that> wouldn't be selfish of you at all...your comfort is> very important! I> had purchased mine a year and a half before I became> sick and I hardly> ever used it, but after the surgical biopsy on my> spinal cord it is the> only place I am truly comfortable. I take a 2 hour> nap

each afternoon> also...so you are definitely not alone. I sleep> about 6-1/2 to 8 hours> a night and within several hours of getting out of> bed for the day I am> back asleep for several hours in my recliner. I> definitely have to divy> up my energy...just like Darlene said...store it up> if you know there is> something you have to do later in the day or the> next day.> > Hang in there!> > Hugs,> > in UT> > > > > It is funny you talk about riding your recliner - I> was thinking about> buying one for my husband as a suprise, but I> realized it I bought one> it would be for me. Pretty selfish huh?> > > __________________________________________________Do You

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[Guest guest]

I have gastroparasesis also. My gastro. just put botox down in my stomach where it "hitches" up to the small intestine to help the food move along more quickly. It's been about a month now. It has helped some, but not completely. He says it may take more time to be able to tell? Who knows.........DebbieConnie Griffis wrote: The meal thing is very valid. It takes alot of energyto digest a meal and some of have gastric paresis soit takes longer. Heart patients have alot of problemswith this and have to eat carefully or it will stresstheir heart and can cause them problems.Connie--- mosaicgirl1 wrote:> > Rick,> > What an over whelming response to a question I> thought no one would> answer. I sleep

aroudn 2 hours each after noon. I> never thought about> how meals affect things. I will have to keep an eye> on that.> > Thank you so much for your concern> > Terri> > >> > Hey Guys,> >> > I wanted to know if I am crazy or if this

happens> to anyone else. If I> > don't take time to rest and push myself for a> couple of days, I feel> > like major crap and have an increase in symptoms.> If I rest for a> > couple of days the symptoms become minimal and I> am back at it in the> > vicious circle pushing myself to get things done> then back in the same> > downward spiral.> >> > What do you guys think.> >> > Terri G.> >> >> >> >> >> >> > ---------------------------------> > Be a better Heartthrob. Get better relationship> answers from someone> who knows.> > Yahoo! Answers - Check it out.> >> > > > __________________________________________________

[Guest guest]

Marla,

As you know, I am on SSDI. Medicare does not pay for my Remicade, but it does pay for the facility fee.

I don't know how it works with Medicare Part D-- if you have RX drug coverage, and that doesn't cover the actual medication-- then I believe that if you are put on Remicade, and it is infused in a hospital infusion center and NOT IN AN MD'S OFFICE then it should be covered like chemotherapy for cancer is covered. I'll have to look into that-- and see what info I can get from the biller at the hospital.

What is happening with your appeals? I know you have the 2nd denial- and that you are waiting to see what happens with the next appeal.

Any more movement on this?

Love to you,

TracieStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

they want to try to figure out why I still have activity in the brain.

Kindof scary isn't it. Dr. 1 says, "Wow, I don't get it, with all we've done to this patient, they still have activity in the brain."

Dr. 2 replys "I know, we've done a labotomy, a cranioectomy, and we've told her that those leads we put on her scalp to see if she has brain activity were actually time warp wires-- and she still keeps on ticking..."Start the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Tracie My cytoxan iv at the hospital is covered but my part D wouldn't cover the pills. I'm still trying to get on another medicine but they want to try to figure out why I still have activity in the brain. I am assuming they mean the sarc is active & doing it's thing.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

just wondering if SSDI paid for the Remicaid, so who is paying for your Remicade?

I get my Remicade from my drug coverage thru UHC United HEaltcare. They have my Part D coverage via my ex-employer (Pacific Bell) . I do have to use a specialty pharmacy, and had to jump thru hoops to get it covered. Like you, originally the insurance said no way-- then Dr. Sharma sent them a letter that said to put me on Remicade or put me on a lung transplant list. So I got the Remicade.

We did have to show them that I'd tried everything else-- and that this was last chance/choice.

I know that I can make up to $700 a month working outside of my home-- however, there is no way I could work at all-- and that is not by choice. I doubt that I could even run a home based business like MK. (I was an Amway dealer for years, and no longer have my business- I did not have the energy to deal with it, even tho I loved it.)

It's been a while since I've dealt with SSDI qualifications, but I believe they look at your income and your husbands, and since you've put in your 40 quarters, they would qualify you at the 25% level. That is, you'd get 25% of what you made while you were working. I know that is where we are at-- and I do have a policy that I elected while I was working that was for longterm disability, and that meant that the phone company had to match my SSDI, and give me my secondary coverage along with the drug coverage. This has been a Godsend, as this is where I have my Remicade covered. I know that we would not be able to get secondary coverage for me via any of the Part D electives that I can afford. Unfortunately, it also means that I can't get another secondary coverage (Part that would pick up the 20% Medicare doesn't pay-- they've managed to set the copay so high that I end up paying that portion as they (the phone company) has contracted with UHC to look at what Medicare pays, then figure what they would have paid if they'd been primary payer, and since that amount is more or equal to the copay-- then they don't have to pay any addl. This is the part that is killing us financially.

Personally, if I were you-- I'd put in for my SSDI-- and get that money coming in. That way if you pass away, your hubby would have your SSDI widowers income, (I know it's not necessary, but you did pay into it) and for now, you'd have your income and some spending money. For us, it's absolutely essential, without it, we'd have lost our home a long time ago.

Love to you,

Tracie

NS Co-owner/moderator

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

No

Tracie,

Still just

waiting to see what they decide, my husband and I were just wondering if SSDI

paid for the Remicaid, so who is paying for your Remicade?

Right

now I am fighting fatigue, and I have not been very fatigued since my healings,

I think it’s just all the stress here, like you I have teens but my

stress is, neither one of there cars are working, so we are a 4 car family on 2

cars, so you know who’s care is being used, I’ve had to rearrange appointments

etc. I have some stress by not working my business lately, I know I shouldn’t

be stress about it, but I am.

Do you

have a limit on what you can make if you are on SSDI, or can you work at all?

I do want to continue with my MK business as it usually is a Positive in my

life, so I was just wondering, don’t know that I will go that way

anyway.

Thanks

for the info, blessings, Marla

Marla Bramer

Independent Beauty

Consultant

Kay cosmetics

mbramer@...

www.marykay.com

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Tuesday, January 22, 2008

9:06 PM

To: Neurosarcoidosis

Subject: Re:

question

Marla,

As you know, I am on

SSDI. Medicare does not pay for my Remicade, but it does pay for the

facility fee.

I don't know how it

works with Medicare Part D-- if you have RX drug coverage, and that doesn't

cover the actual medication-- then I believe that if you are put on Remicade,

and it is infused in a hospital infusion center and NOT IN AN MD'S OFFICE

then it should be covered like chemotherapy for cancer is covered. I'll

have to look into that-- and see what info I can get from the biller at the hospital.

What is happening with

your appeals? I know you have the 2nd denial- and that you are waiting to

see what happens with the next appeal.

Any more movement on

this?

Love to you,

Tracie

Start the year off right. Easy

ways to stay in shape in the new year.

[Guest guest]

Tracie,

Do you

have Dr. Sharma email address by any chance,

that was something a doctor told Jim was to get a letter from one or more of

the doctors that have done the studies and would recommend Remicade.

Thanks Marla

Ps I really have not

had the energy to do my business lately either, which makes me sad.

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Thursday, January 24, 2008

1:59 PM

To: Neurosarcoidosis

Subject: Re:

question

In a message dated

1/24/2008 11:19:51 A.M. Pacific Standard Time, mebramer (AT) gmail (DOT) com writes:

just

wondering if SSDI paid for the Remicaid, so who is paying for your Remicade?

I get my Remicade from

my drug coverage thru UHC United HEaltcare. They have my Part D coverage via my

ex-employer (Pacific Bell) . I do have to use a specialty pharmacy, and

had to jump thru hoops to get it covered. Like you, originally the

insurance said no way-- then Dr. Sharma sent them a letter that said to put me

on Remicade or put me on a lung transplant list. So I got the Remicade.

We did have to show

them that I'd tried everything else-- and that this was last chance/choice.

I know that I can make

up to $700 a month working outside of my home-- however, there is no way I

could work at all-- and that is not by choice. I doubt that I could even

run a home based business like MK. (I was an Amway dealer for years, and

no longer have my business- I did not have the energy to deal with it, even tho

I loved it.)

It's been a while

since I've dealt with SSDI qualifications, but I believe they look at your

income and your husbands, and since you've put in your 40 quarters, they would

qualify you at the 25% level. That is, you'd get 25% of what you made

while you were working. I know that is where we are at-- and I do have a

policy that I elected while I was working that was for longterm disability, and

that meant that the phone company had to match my SSDI, and give me my

secondary coverage along with the drug coverage. This has been a Godsend,

as this is where I have my Remicade covered. I know that we would not be

able to get secondary coverage for me via any of the Part D electives that I

can afford. Unfortunately, it also means that I can't get another

secondary coverage (Part that would pick up the 20% Medicare doesn't pay--

they've managed to set the copay so high that I end up paying that portion as

they (the phone company) has contracted with UHC to look at what Medicare pays,

then figure what they would have paid if they'd been primary payer, and since

that amount is more or equal to the copay-- then they don't have to pay any

addl. This is the part that is killing us financially.

Personally, if I were

you-- I'd put in for my SSDI-- and get that money coming in. That way if

you pass away, your hubby would have your SSDI widowers income, (I know

it's not necessary, but you did pay into it) and for now, you'd have your

income and some spending money. For us, it's absolutely essential,

without it, we'd have lost our home a long time ago.

Love to you,

Tracie

NS Co-owner/moderator

Who's never won? Biggest

Grammy Award surprises of all time on AOL Music.

[Guest guest]

Tracie,

Do you have Dr. Sharma email address by any chance, that was something a doctor told Jim was to get a letter from one or more of the doctors

http://www.sarcoidosissharma.com/Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Tracie,

Do you have Dr. Sharma email address by any chance, that was something a doctor told Jim was to get a letter from one or more of the doctors

http://www.sarcoidosissharma.com/Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Tracie,

Thank you,

I was looking through some of the sites listed but either didn’t see this

one, or did and missed it, you are greatly appreciated, marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Friday, January 25, 2008

9:08 PM

To: Neurosarcoidosis

Subject: Re:

question

In a message dated

1/25/2008 11:42:46 A.M. Pacific Standard Time, mebramer (AT) gmail (DOT) com writes:

Tracie,

Do you have Dr. Sharma

email address by any chance, that was something a doctor told Jim was to get a

letter from one or more of the doctors

http://www.sarcoidosissharma.com/

Who's never won? Biggest

Grammy Award surprises of all time on AOL Music.

[Guest guest]

Tracie,

Thank you,

I was looking through some of the sites listed but either didn’t see this

one, or did and missed it, you are greatly appreciated, marl a

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Friday, January 25, 2008

9:08 PM

To: Neurosarcoidosis

Subject: Re:

question

In a message dated

1/25/2008 11:42:46 A.M. Pacific Standard Time, mebramer (AT) gmail (DOT) com writes:

Tracie,

Do you have Dr. Sharma

email address by any chance, that was something a doctor told Jim was to get a

letter from one or more of the doctors

http://www.sarcoidosissharma.com/

Who's never won? Biggest

Grammy Award surprises of all time on AOL Music.