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Hi Eleanor! Welcome to the group! I live in Canada so unfortuneatley I'm not

able to recommend a godd rheumologist (it is so important to find a good one).

I didn't have Lyme disease before Stills but my little boy had chicken pox and

my husband had shingles so that's how I think my system got out of whack!

I DID start with lots of aspririn at first (20 pills every four hours). It

seemed to help control the symptoms although my rash never disappeared and I

felt " funny " all the time (because of the high dose of aspririn I developed

tinitis and other complications). One thing that helped was when I switched to

a coated aspririn. Are you taking a coated aspririn? I also took an anti ulcer

drug at the same time to combat the side effects but I can't remember what that

was - sorry! Hopefully though you will be able to get off the aspririn soon and

onto something that is more effective with less side effects.

I was left with the same feeling of being down, confused and in disbelief at

first (I've only been diagnosed for two years) and those feelings still return

BUT I am able to lead a fairly normal life (lots of rest) and my symptoms are

controlled through methotrexate. I know others on the site are much worse off .

.. .

Hope this helps and if you need any other questions answered (or a place to

vent), just type!

Jen P.

Also, I was wondering about the itching too - that's a fairly new symptom for me

.. . .

Hello

Hi everyone.

I'm new to the mailing list. I am a 36 year old female living in central NJ

who recently was diagnosed with Stills. I would much appreciate any

information you can share with me since this diagnosis has left me feeling

down, confused, and in disbelief.

Can anyone recommend any good rhematologists in NJ, PA or NY who have

experience treating Stills patients?

Has anyone had Lymes disesase prior to getting this disease? My theory is

that Lymes eventually caused my immune system to become out of whack and

cause this disease.

Has anyone started with 4000 milligrams of aspririn a day to treat this? I

started on it and started to feel pretty good and after a few weeks had

stomach problems (nausea, vomiting and the fever returned). Now I'm on

prednisone (15 mgs a day). I don't have any systemic problems (yet) and was

hoping there was a treatment I could be on that's in between asprin and

prednisone.

Finally, does anyone experience general itching? This never seems to go away,

neither do the rashes.

Thanks,

Eleanor

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

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  • 3 weeks later...

Just received this note from Connie,

Please remember her in your thoughts and prayers.

tricia

hello

> just a quick update still very very sick and having surgiury monday aat

330

> they are finally taking the gallblader ouwould write more but i cant sit

> here.pretty sick need to lay back down your call realy cheered me up and

> gqave me hope

> love ya

> connie

> ps pass on to the group an update/

>

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Just received this note from Connie,

Please remember her in your thoughts and prayers.

tricia

hello

> just a quick update still very very sick and having surgiury monday aat

330

> they are finally taking the gallblader ouwould write more but i cant sit

> here.pretty sick need to lay back down your call realy cheered me up and

> gqave me hope

> love ya

> connie

> ps pass on to the group an update/

>

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Share on other sites

Just received this note from Connie,

Please remember her in your thoughts and prayers.

tricia

hello

> just a quick update still very very sick and having surgiury monday aat

330

> they are finally taking the gallblader ouwould write more but i cant sit

> here.pretty sick need to lay back down your call realy cheered me up and

> gqave me hope

> love ya

> connie

> ps pass on to the group an update/

>

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  • 3 months later...

Hi, it's me, a . When I post from Yahoo it uses my

password as my name. I don't know how to change it. I hope I'm able

to walk the four blocks by noon. It's quicker to walk outside

instead of going through the skyway but today happens to be one of

the coldest days this winter.

Thanks again for writing.

> Dear z; I'm sorry I don't remember your name, but got your post

and wanted

> to say hang in there :0) I know it is very difficult to

concentrate with

> your body parts screaming at you. I hope your afternoon is much

better when

> you get your meds. Till soon, Melt

>

>

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Hi, it's me, a . When I post from Yahoo it uses my

password as my name. I don't know how to change it. I hope I'm able

to walk the four blocks by noon. It's quicker to walk outside

instead of going through the skyway but today happens to be one of

the coldest days this winter.

Thanks again for writing.

> Dear z; I'm sorry I don't remember your name, but got your post

and wanted

> to say hang in there :0) I know it is very difficult to

concentrate with

> your body parts screaming at you. I hope your afternoon is much

better when

> you get your meds. Till soon, Melt

>

>

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Share on other sites

Hi, it's me, a . When I post from Yahoo it uses my

password as my name. I don't know how to change it. I hope I'm able

to walk the four blocks by noon. It's quicker to walk outside

instead of going through the skyway but today happens to be one of

the coldest days this winter.

Thanks again for writing.

> Dear z; I'm sorry I don't remember your name, but got your post

and wanted

> to say hang in there :0) I know it is very difficult to

concentrate with

> your body parts screaming at you. I hope your afternoon is much

better when

> you get your meds. Till soon, Melt

>

>

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Share on other sites

Hi a !! If you just sign your posts then we will know and you don't

have the worry of changing your addy. :0) I hope you make it through the

cold too. Till soon, Melt

Re: Hello

> Hi, it's me, a . When I post from Yahoo it uses my

> password as my name. I don't know how to change it. I hope I'm able

> to walk the four blocks by noon. It's quicker to walk outside

> instead of going through the skyway but today happens to be one of

> the coldest days this winter.

>

> Thanks again for writing.

>

>

> > Dear z; I'm sorry I don't remember your name, but got your post

> and wanted

> > to say hang in there :0) I know it is very difficult to

> concentrate with

> > your body parts screaming at you. I hope your afternoon is much

> better when

> > you get your meds. Till soon, Melt

> >

> >

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

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Share on other sites

Hi a !! If you just sign your posts then we will know and you don't

have the worry of changing your addy. :0) I hope you make it through the

cold too. Till soon, Melt

Re: Hello

> Hi, it's me, a . When I post from Yahoo it uses my

> password as my name. I don't know how to change it. I hope I'm able

> to walk the four blocks by noon. It's quicker to walk outside

> instead of going through the skyway but today happens to be one of

> the coldest days this winter.

>

> Thanks again for writing.

>

>

> > Dear z; I'm sorry I don't remember your name, but got your post

> and wanted

> > to say hang in there :0) I know it is very difficult to

> concentrate with

> > your body parts screaming at you. I hope your afternoon is much

> better when

> > you get your meds. Till soon, Melt

> >

> >

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

Link to comment
Share on other sites

Hi a !! If you just sign your posts then we will know and you don't

have the worry of changing your addy. :0) I hope you make it through the

cold too. Till soon, Melt

Re: Hello

> Hi, it's me, a . When I post from Yahoo it uses my

> password as my name. I don't know how to change it. I hope I'm able

> to walk the four blocks by noon. It's quicker to walk outside

> instead of going through the skyway but today happens to be one of

> the coldest days this winter.

>

> Thanks again for writing.

>

>

> > Dear z; I'm sorry I don't remember your name, but got your post

> and wanted

> > to say hang in there :0) I know it is very difficult to

> concentrate with

> > your body parts screaming at you. I hope your afternoon is much

> better when

> > you get your meds. Till soon, Melt

> >

> >

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

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Share on other sites

  • 3 weeks later...
Guest guest

Marty,

Thank goodness! I just got this e-mail...and now I can relax

just a bit! I told my husband how concerned I was about you

and your situation, and I got him concerned to. He keeps asking

if there is any e-mail from Marty yet.....now I can say " yes, he's

tough, and he's hanging in there! " Once and I were so

depressed we talked of hanging ourselves. Literally. Together..

but, we decided against it for time being. That was way over a

year ago.

Hopefully, the SSDI thing *will* get their butts in gear, and get

that date set!!!!

We care, Dennis & Tricia

(in Wisconsin)

hello

> Well to all that were wondering yes the person that wanted to flush the

drugs and life down the crapper was me and I have to say I'm here to day

because of this sight and my faith I just felt like giving up as I know

many of you have at some time .

> The no money deal and only working we have just a bought reached

the end of the pot of gold we had (LOL) and know it is all we can do to make

bills and she doesn't make unof to do that on here own and yet every thing I

have tried to do to make some money also cost money so now we have less then

SSI has been playing first we were told court should be in Feb. the March

now there saying pos April or May well I have not worked it over a year and

half so the funds we had put a way are now gone and now we have to fight I

just wanted to give up but then some people from this sight made me stop

and think with there postings and privet thinking of you's so I wanted to

say thank you all and I will be here on and off more off then on for a time

> Marty G.Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

>

>

>

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Share on other sites

Guest guest

We bought a " long distance " calling card at Sams CLub. 3.4 cents

a minute. 600 minute card. I cancelled our long distance on the reg.

monthly phone bill...most folks don't even check it out, but a lot of

" taxes " are charged on your local phone bill...and several for even

having the long distance feature. (which we no longer do) It has

knocked our phone bill way down.

Most public libraries offer FREE movie's to borrow, sometimes for

up to seven days.

We have started buying doggy antibiotics at Fleet Farm. Also other

meds the pets might need. Syringes too. We do *not* give them their

Rabies vaccine as we need the *license* from the vet for that. But, we

buy a lot of other things there that we need. We just got a catalog

from a company that offers flea & tick protection for dogs and cats

at fantastic savings if buying in larger quanities....so several families

are going to go in on this.

Some places have " food buying clubs, " where several families can chip

in and buy more at a time and then divvy up. Also check for local " food

pantries. " Don't feel embarrassed about taking a handout when it's needed.

There isn't one of us who wouldn't be out there working if we could. Some

can and do...but many just can not.

Carloline ...great ideas, here's an idea, write a booklet about ways to

pinch,

and publish it. There are some out there...but, another one with a few more

hints wouldn't hurt!

We also buy our " pets toys " at thrift stores, or Goodwill. Usually a buck

for

a whole bagful. Some don't last long...but what the hey.

We have a grocery store in a small town near us where they sell all kinds of

salad dressings, spices, coffee, canned goods, etc. (every week something

different) for really reasonable prices. Things where maybe one or two cans

had a dent..so they get the whole case. Spices for $1 a bottle, where you

pay

$4 or $5 at your local supermarket.

Keep looking for the deals...they'll be there. We also buy bones from a

local

butcher for 13 cents a pound for the dogs. ( I cook them a little first in

the

micro...I don't like the idea of the totally raw stuff!)

Come on everyone..let's get some more idea's.

One more, about home payments. If you are in a finacial bind it is a good

idea to have a talk with someone at the company who holds your mortgage.

They can be very understanding and will sometimes go that extra mile, and

tell you ways to keep your home while waiting for your disability or circum-

stances to hopefully improve. I know most of a home payment *is* the

interest...

but, if you can manage the interest only...they will let the rest slide for

quite

awhile. (depending on the company of course) My sister and husband have

disability insurance which is a good thing to have. It took over their house

and car payments while he was laid up with a bad shoulder. Most people *don

t*

have that coverage though. (we could never afford it!)

Tricia

-- Re: hello

Marty,

I know about the no money deal, and I have no insurance either. I am sure

you have come up with lots of survival tools, but here are some of ours. My

prescriptions cost over $700.00 a month so my doctors give me samples to

cover the expensive ones. If you are not getting free samples from your

doctors who know you are in a financial bind, you either need to ask for

them, or change doctors to one who is more generous. The doctors get the

samples for free from the drug reps and the drug companies are happy to have

as many people on their meds as possible so they don't mind the doctors

doling out lots of samples. Another resource is to check with your clinics

to see if they have any health studies available. My daugher has asthma. She

goes to an alergy clinic and has lots of labs and so forth. The clinic put

her in a study for asthma and now she gets all of her treatment for free,

all meds for free, and gets paid $700.00 for a year study. She buys her

clothes and school supplies with that. I am trying to find one for diabetes

and I have heard they have them for pain, heart, and many other common

problems. Check it out. Free labs, meds, care and get paid is pretty good

deal! My husband did a 3 month alergy study and got $350.00 for the 3 months

To lower monthly expenses, we got rid of everything possible. No cable TV,

pager, cell phones, etc. We shopped around for the cheapest internet access.

You can get online with some of the local companies for as little as $14.95

a month and many will give you $10.00 off for each person you refer who

signs up with them, Even if it is only for a month. We use email instead of

regular mail, and email instead of phone calls. When we want to talk to

someone long distance, we use our internet microphone (cost about $10.00,

one time fee to purchase) and talk online for free. I call the bills I would

have to mail and see if they will do check by phone or my debit card. It may

only be thirty something cents, but multiply that by all the mail you need

to send and it adds up to $6-10.00 a month for us. I do not let them do

automatic debit because I never know when I will have money. Since I need

exercise, the kids and I will walk in various " litter " places and collect

pop bottles or cans. Here in Oregon, they are worth a nickle a piece. I

found a cool trick with second hand shopping too. Most places have a " all

you can stuff in a bag " for a buck idea or consignment program. I go to the

Goodwill sort of store, select good quality, in style garments for the " all

you can stuff " price. If they need buttons, I find an ugly item with the

right buttons and stiff it too (to canabalize and trash later) I take them

home, defuzz sweaters, wash and press them. I mend and replace buttons on

other items. Usually minimal work. When I have the task complete, I take the

stuff I bought for a buck and take it to a more uptown second hand store

that buys good garments. I sell them my clothes and make cash. Stuff I can't

get sold from these shops, I put on consignment at other stores. It does not

matter what they sell for, so I give the sales managment permission to mark

down as needed. If I sell one garment for $2.50, I made my money back and

have more than I started with. I have made as much as $50.00 this way. I

have also traded stuff I did not want for things I needed, like work clothes

So, sell, consign, or trade... I still get what I needed. Just an idea but

you may think of other ways to put the idea into practice. Like collecting

old junk bikes for parts (neighbors are happy to not have to haul them to

the dump and will frequently donate them to you) to fix up bicycles for kids

Stretching the food dollar works if you can start buying a lot of the

things at rediculous prices, like tuna at 3 for a dollar. buy $10.00 at a

time if you can. You won't need it all now, but if you can gradually buy

bulk of rediculous sales, soon you don't need items at regular price because

you stocked up when it was on sale. Meat is the expensive one, so take

advantage of the buy one, get one free or the 10 pounds for $2.00 a pound

deals. Break up the packages into meal sizes when you get home and freeze in

freezer containers with the date on it, so you don't keep it there too long.

I don't use many coupons, but save huge on clearance sales and food sales.

Stores figure once you come for the bargain basement things, you will buy

other as well. I don't, but I also don't run around wasting time or money

chasing down deals. I dont' have the energy. I go where they have the most

things I need this week and any other rediculous sale on food that is worth

the extra time and money. FTI: They can not legally foreclose on your home

until you are 3 payments behind. It usually takes 6 months for the paperwork

to be done to be evicted. Lowering your water heater temp and your home

heating system 1-2 degrees can save up to $10.00 a month for each degree you

drop. There is a web site called www.lowermybills.com that is very helpful.

If you can type, or are interested in home business, you can call 1 800 998

7094 ext 1084 and get information about billing medicare for doctors who are

doing it by paper and need to switch to electronic billing. Medicare only

accepts electronic billing now. You can work at your own pace and the office

online is open 24 hours a day. That one you do have to become certified for

at a cost of about $500.00 but you can work at home, they supply the names

of the doctors who need help in your area, and contracts. Most doctors pay

$3-7.00 per claim and the average person can do 10-20 claims per hour. I am

thinking of doing this, but am waiting to see what SSI and SSDI says first.

I should know by May 01. I am sure I have lots of other ideas, but I can't

think of any right now. Send me an email with your problem areas and I'll

brain storm some creative ways to help.

Hope this helps some. Keep smiling, and let us know where you need help...

we may have ideas you didn't think of. Caroline

and Gilbertson & lt;huntman_and_wife@...> wrote: Well to all

that were wondering yes the person that wanted to flush the drugs and life

down the crapper was me and I have to say I'm here to day because of this

sight and my faith I just felt like giving up as I know many of you have at

some time .

The no money deal and only working we have just a bought reached the

end of the pot of gold we had (LOL) and know it is all we can do to make

bills and she doesn't make unof to do that on here own and yet every thing I

have tried to do to make some money also cost money so now we have less then

SSI has been playing first we were told court should be in Feb. the March

now there saying pos April or May well I have not worked it over a year and

half so the funds we had put a way are now gone and now we have to fight I

just wanted to give up but then some people from this sight made me stop and

think with there postings and privet thinking of you's so I wanted to say

thank you all and I will be here on and off more off then on for a time

Marty G.Get more from the Web. FREE MSN Explorer download : http://explorer

msn.com

Link to comment
Share on other sites

Guest guest

We bought a " long distance " calling card at Sams CLub. 3.4 cents

a minute. 600 minute card. I cancelled our long distance on the reg.

monthly phone bill...most folks don't even check it out, but a lot of

" taxes " are charged on your local phone bill...and several for even

having the long distance feature. (which we no longer do) It has

knocked our phone bill way down.

Most public libraries offer FREE movie's to borrow, sometimes for

up to seven days.

We have started buying doggy antibiotics at Fleet Farm. Also other

meds the pets might need. Syringes too. We do *not* give them their

Rabies vaccine as we need the *license* from the vet for that. But, we

buy a lot of other things there that we need. We just got a catalog

from a company that offers flea & tick protection for dogs and cats

at fantastic savings if buying in larger quanities....so several families

are going to go in on this.

Some places have " food buying clubs, " where several families can chip

in and buy more at a time and then divvy up. Also check for local " food

pantries. " Don't feel embarrassed about taking a handout when it's needed.

There isn't one of us who wouldn't be out there working if we could. Some

can and do...but many just can not.

Carloline ...great ideas, here's an idea, write a booklet about ways to

pinch,

and publish it. There are some out there...but, another one with a few more

hints wouldn't hurt!

We also buy our " pets toys " at thrift stores, or Goodwill. Usually a buck

for

a whole bagful. Some don't last long...but what the hey.

We have a grocery store in a small town near us where they sell all kinds of

salad dressings, spices, coffee, canned goods, etc. (every week something

different) for really reasonable prices. Things where maybe one or two cans

had a dent..so they get the whole case. Spices for $1 a bottle, where you

pay

$4 or $5 at your local supermarket.

Keep looking for the deals...they'll be there. We also buy bones from a

local

butcher for 13 cents a pound for the dogs. ( I cook them a little first in

the

micro...I don't like the idea of the totally raw stuff!)

Come on everyone..let's get some more idea's.

One more, about home payments. If you are in a finacial bind it is a good

idea to have a talk with someone at the company who holds your mortgage.

They can be very understanding and will sometimes go that extra mile, and

tell you ways to keep your home while waiting for your disability or circum-

stances to hopefully improve. I know most of a home payment *is* the

interest...

but, if you can manage the interest only...they will let the rest slide for

quite

awhile. (depending on the company of course) My sister and husband have

disability insurance which is a good thing to have. It took over their house

and car payments while he was laid up with a bad shoulder. Most people *don

t*

have that coverage though. (we could never afford it!)

Tricia

-- Re: hello

Marty,

I know about the no money deal, and I have no insurance either. I am sure

you have come up with lots of survival tools, but here are some of ours. My

prescriptions cost over $700.00 a month so my doctors give me samples to

cover the expensive ones. If you are not getting free samples from your

doctors who know you are in a financial bind, you either need to ask for

them, or change doctors to one who is more generous. The doctors get the

samples for free from the drug reps and the drug companies are happy to have

as many people on their meds as possible so they don't mind the doctors

doling out lots of samples. Another resource is to check with your clinics

to see if they have any health studies available. My daugher has asthma. She

goes to an alergy clinic and has lots of labs and so forth. The clinic put

her in a study for asthma and now she gets all of her treatment for free,

all meds for free, and gets paid $700.00 for a year study. She buys her

clothes and school supplies with that. I am trying to find one for diabetes

and I have heard they have them for pain, heart, and many other common

problems. Check it out. Free labs, meds, care and get paid is pretty good

deal! My husband did a 3 month alergy study and got $350.00 for the 3 months

To lower monthly expenses, we got rid of everything possible. No cable TV,

pager, cell phones, etc. We shopped around for the cheapest internet access.

You can get online with some of the local companies for as little as $14.95

a month and many will give you $10.00 off for each person you refer who

signs up with them, Even if it is only for a month. We use email instead of

regular mail, and email instead of phone calls. When we want to talk to

someone long distance, we use our internet microphone (cost about $10.00,

one time fee to purchase) and talk online for free. I call the bills I would

have to mail and see if they will do check by phone or my debit card. It may

only be thirty something cents, but multiply that by all the mail you need

to send and it adds up to $6-10.00 a month for us. I do not let them do

automatic debit because I never know when I will have money. Since I need

exercise, the kids and I will walk in various " litter " places and collect

pop bottles or cans. Here in Oregon, they are worth a nickle a piece. I

found a cool trick with second hand shopping too. Most places have a " all

you can stuff in a bag " for a buck idea or consignment program. I go to the

Goodwill sort of store, select good quality, in style garments for the " all

you can stuff " price. If they need buttons, I find an ugly item with the

right buttons and stiff it too (to canabalize and trash later) I take them

home, defuzz sweaters, wash and press them. I mend and replace buttons on

other items. Usually minimal work. When I have the task complete, I take the

stuff I bought for a buck and take it to a more uptown second hand store

that buys good garments. I sell them my clothes and make cash. Stuff I can't

get sold from these shops, I put on consignment at other stores. It does not

matter what they sell for, so I give the sales managment permission to mark

down as needed. If I sell one garment for $2.50, I made my money back and

have more than I started with. I have made as much as $50.00 this way. I

have also traded stuff I did not want for things I needed, like work clothes

So, sell, consign, or trade... I still get what I needed. Just an idea but

you may think of other ways to put the idea into practice. Like collecting

old junk bikes for parts (neighbors are happy to not have to haul them to

the dump and will frequently donate them to you) to fix up bicycles for kids

Stretching the food dollar works if you can start buying a lot of the

things at rediculous prices, like tuna at 3 for a dollar. buy $10.00 at a

time if you can. You won't need it all now, but if you can gradually buy

bulk of rediculous sales, soon you don't need items at regular price because

you stocked up when it was on sale. Meat is the expensive one, so take

advantage of the buy one, get one free or the 10 pounds for $2.00 a pound

deals. Break up the packages into meal sizes when you get home and freeze in

freezer containers with the date on it, so you don't keep it there too long.

I don't use many coupons, but save huge on clearance sales and food sales.

Stores figure once you come for the bargain basement things, you will buy

other as well. I don't, but I also don't run around wasting time or money

chasing down deals. I dont' have the energy. I go where they have the most

things I need this week and any other rediculous sale on food that is worth

the extra time and money. FTI: They can not legally foreclose on your home

until you are 3 payments behind. It usually takes 6 months for the paperwork

to be done to be evicted. Lowering your water heater temp and your home

heating system 1-2 degrees can save up to $10.00 a month for each degree you

drop. There is a web site called www.lowermybills.com that is very helpful.

If you can type, or are interested in home business, you can call 1 800 998

7094 ext 1084 and get information about billing medicare for doctors who are

doing it by paper and need to switch to electronic billing. Medicare only

accepts electronic billing now. You can work at your own pace and the office

online is open 24 hours a day. That one you do have to become certified for

at a cost of about $500.00 but you can work at home, they supply the names

of the doctors who need help in your area, and contracts. Most doctors pay

$3-7.00 per claim and the average person can do 10-20 claims per hour. I am

thinking of doing this, but am waiting to see what SSI and SSDI says first.

I should know by May 01. I am sure I have lots of other ideas, but I can't

think of any right now. Send me an email with your problem areas and I'll

brain storm some creative ways to help.

Hope this helps some. Keep smiling, and let us know where you need help...

we may have ideas you didn't think of. Caroline

and Gilbertson & lt;huntman_and_wife@...> wrote: Well to all

that were wondering yes the person that wanted to flush the drugs and life

down the crapper was me and I have to say I'm here to day because of this

sight and my faith I just felt like giving up as I know many of you have at

some time .

The no money deal and only working we have just a bought reached the

end of the pot of gold we had (LOL) and know it is all we can do to make

bills and she doesn't make unof to do that on here own and yet every thing I

have tried to do to make some money also cost money so now we have less then

SSI has been playing first we were told court should be in Feb. the March

now there saying pos April or May well I have not worked it over a year and

half so the funds we had put a way are now gone and now we have to fight I

just wanted to give up but then some people from this sight made me stop and

think with there postings and privet thinking of you's so I wanted to say

thank you all and I will be here on and off more off then on for a time

Marty G.Get more from the Web. FREE MSN Explorer download : http://explorer

msn.com

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Guest guest

We bought a " long distance " calling card at Sams CLub. 3.4 cents

a minute. 600 minute card. I cancelled our long distance on the reg.

monthly phone bill...most folks don't even check it out, but a lot of

" taxes " are charged on your local phone bill...and several for even

having the long distance feature. (which we no longer do) It has

knocked our phone bill way down.

Most public libraries offer FREE movie's to borrow, sometimes for

up to seven days.

We have started buying doggy antibiotics at Fleet Farm. Also other

meds the pets might need. Syringes too. We do *not* give them their

Rabies vaccine as we need the *license* from the vet for that. But, we

buy a lot of other things there that we need. We just got a catalog

from a company that offers flea & tick protection for dogs and cats

at fantastic savings if buying in larger quanities....so several families

are going to go in on this.

Some places have " food buying clubs, " where several families can chip

in and buy more at a time and then divvy up. Also check for local " food

pantries. " Don't feel embarrassed about taking a handout when it's needed.

There isn't one of us who wouldn't be out there working if we could. Some

can and do...but many just can not.

Carloline ...great ideas, here's an idea, write a booklet about ways to

pinch,

and publish it. There are some out there...but, another one with a few more

hints wouldn't hurt!

We also buy our " pets toys " at thrift stores, or Goodwill. Usually a buck

for

a whole bagful. Some don't last long...but what the hey.

We have a grocery store in a small town near us where they sell all kinds of

salad dressings, spices, coffee, canned goods, etc. (every week something

different) for really reasonable prices. Things where maybe one or two cans

had a dent..so they get the whole case. Spices for $1 a bottle, where you

pay

$4 or $5 at your local supermarket.

Keep looking for the deals...they'll be there. We also buy bones from a

local

butcher for 13 cents a pound for the dogs. ( I cook them a little first in

the

micro...I don't like the idea of the totally raw stuff!)

Come on everyone..let's get some more idea's.

One more, about home payments. If you are in a finacial bind it is a good

idea to have a talk with someone at the company who holds your mortgage.

They can be very understanding and will sometimes go that extra mile, and

tell you ways to keep your home while waiting for your disability or circum-

stances to hopefully improve. I know most of a home payment *is* the

interest...

but, if you can manage the interest only...they will let the rest slide for

quite

awhile. (depending on the company of course) My sister and husband have

disability insurance which is a good thing to have. It took over their house

and car payments while he was laid up with a bad shoulder. Most people *don

t*

have that coverage though. (we could never afford it!)

Tricia

-- Re: hello

Marty,

I know about the no money deal, and I have no insurance either. I am sure

you have come up with lots of survival tools, but here are some of ours. My

prescriptions cost over $700.00 a month so my doctors give me samples to

cover the expensive ones. If you are not getting free samples from your

doctors who know you are in a financial bind, you either need to ask for

them, or change doctors to one who is more generous. The doctors get the

samples for free from the drug reps and the drug companies are happy to have

as many people on their meds as possible so they don't mind the doctors

doling out lots of samples. Another resource is to check with your clinics

to see if they have any health studies available. My daugher has asthma. She

goes to an alergy clinic and has lots of labs and so forth. The clinic put

her in a study for asthma and now she gets all of her treatment for free,

all meds for free, and gets paid $700.00 for a year study. She buys her

clothes and school supplies with that. I am trying to find one for diabetes

and I have heard they have them for pain, heart, and many other common

problems. Check it out. Free labs, meds, care and get paid is pretty good

deal! My husband did a 3 month alergy study and got $350.00 for the 3 months

To lower monthly expenses, we got rid of everything possible. No cable TV,

pager, cell phones, etc. We shopped around for the cheapest internet access.

You can get online with some of the local companies for as little as $14.95

a month and many will give you $10.00 off for each person you refer who

signs up with them, Even if it is only for a month. We use email instead of

regular mail, and email instead of phone calls. When we want to talk to

someone long distance, we use our internet microphone (cost about $10.00,

one time fee to purchase) and talk online for free. I call the bills I would

have to mail and see if they will do check by phone or my debit card. It may

only be thirty something cents, but multiply that by all the mail you need

to send and it adds up to $6-10.00 a month for us. I do not let them do

automatic debit because I never know when I will have money. Since I need

exercise, the kids and I will walk in various " litter " places and collect

pop bottles or cans. Here in Oregon, they are worth a nickle a piece. I

found a cool trick with second hand shopping too. Most places have a " all

you can stuff in a bag " for a buck idea or consignment program. I go to the

Goodwill sort of store, select good quality, in style garments for the " all

you can stuff " price. If they need buttons, I find an ugly item with the

right buttons and stiff it too (to canabalize and trash later) I take them

home, defuzz sweaters, wash and press them. I mend and replace buttons on

other items. Usually minimal work. When I have the task complete, I take the

stuff I bought for a buck and take it to a more uptown second hand store

that buys good garments. I sell them my clothes and make cash. Stuff I can't

get sold from these shops, I put on consignment at other stores. It does not

matter what they sell for, so I give the sales managment permission to mark

down as needed. If I sell one garment for $2.50, I made my money back and

have more than I started with. I have made as much as $50.00 this way. I

have also traded stuff I did not want for things I needed, like work clothes

So, sell, consign, or trade... I still get what I needed. Just an idea but

you may think of other ways to put the idea into practice. Like collecting

old junk bikes for parts (neighbors are happy to not have to haul them to

the dump and will frequently donate them to you) to fix up bicycles for kids

Stretching the food dollar works if you can start buying a lot of the

things at rediculous prices, like tuna at 3 for a dollar. buy $10.00 at a

time if you can. You won't need it all now, but if you can gradually buy

bulk of rediculous sales, soon you don't need items at regular price because

you stocked up when it was on sale. Meat is the expensive one, so take

advantage of the buy one, get one free or the 10 pounds for $2.00 a pound

deals. Break up the packages into meal sizes when you get home and freeze in

freezer containers with the date on it, so you don't keep it there too long.

I don't use many coupons, but save huge on clearance sales and food sales.

Stores figure once you come for the bargain basement things, you will buy

other as well. I don't, but I also don't run around wasting time or money

chasing down deals. I dont' have the energy. I go where they have the most

things I need this week and any other rediculous sale on food that is worth

the extra time and money. FTI: They can not legally foreclose on your home

until you are 3 payments behind. It usually takes 6 months for the paperwork

to be done to be evicted. Lowering your water heater temp and your home

heating system 1-2 degrees can save up to $10.00 a month for each degree you

drop. There is a web site called www.lowermybills.com that is very helpful.

If you can type, or are interested in home business, you can call 1 800 998

7094 ext 1084 and get information about billing medicare for doctors who are

doing it by paper and need to switch to electronic billing. Medicare only

accepts electronic billing now. You can work at your own pace and the office

online is open 24 hours a day. That one you do have to become certified for

at a cost of about $500.00 but you can work at home, they supply the names

of the doctors who need help in your area, and contracts. Most doctors pay

$3-7.00 per claim and the average person can do 10-20 claims per hour. I am

thinking of doing this, but am waiting to see what SSI and SSDI says first.

I should know by May 01. I am sure I have lots of other ideas, but I can't

think of any right now. Send me an email with your problem areas and I'll

brain storm some creative ways to help.

Hope this helps some. Keep smiling, and let us know where you need help...

we may have ideas you didn't think of. Caroline

and Gilbertson & lt;huntman_and_wife@...> wrote: Well to all

that were wondering yes the person that wanted to flush the drugs and life

down the crapper was me and I have to say I'm here to day because of this

sight and my faith I just felt like giving up as I know many of you have at

some time .

The no money deal and only working we have just a bought reached the

end of the pot of gold we had (LOL) and know it is all we can do to make

bills and she doesn't make unof to do that on here own and yet every thing I

have tried to do to make some money also cost money so now we have less then

SSI has been playing first we were told court should be in Feb. the March

now there saying pos April or May well I have not worked it over a year and

half so the funds we had put a way are now gone and now we have to fight I

just wanted to give up but then some people from this sight made me stop and

think with there postings and privet thinking of you's so I wanted to say

thank you all and I will be here on and off more off then on for a time

Marty G.Get more from the Web. FREE MSN Explorer download : http://explorer

msn.com

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  • 10 months later...

In a message dated 1/21/2003 5:25:32 PM Eastern Standard Time,

maryanngalvan@... writes:

> wanted to know what other parents have done when

> both parents are working

HI.

If you live in the DFW area, Callier has a summer program you might try & get

him into. The normal school year was $792 per month for morning only. I don't

know what the summer program costs.

Right now my son goes to day care before & after his PPCD program. I'm blessed

that the staff are very caring & understanding. It also helps, that one of the

teachers has a son who is PDD, so they truely understand.

Good luck,

Lori

Mother of AJ, 3, PDD

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  • 1 month later...

Hi, I just wanted to respond to you. My name is Staci

And my home town is Texarkana. I now live in the Houston area

and have always wondered what it would be like if we lived in

Texarkana. My little girl has PDD/NOS and has been a behavior

nightmare at times. She is eight now and she too is getting better

all the time!! We lived in the Cy-Fair school district for awhile

the help was great there. The district we are in now is TRYING

to do better. I think VERY FEW places are great with our kids.

It is very sad!! Best of Luck to you if I can help I will be glad

to. I am usually in Texarkana about ever six weeks. Staci

Hello

> Hello, I was wondering if there are any members in the Texarkana

> area. We have been thru alot since my son was diagnosed with

> Autism, however my Angel has progressed so much in the last three

> years. Hoping to touch base with others in our area. Not alot of

> support here in Texarkana.

>

> Thanks

>

> Tabitha Muckelrath

>

>

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> Schafer Autism Report

> News and information on Autism

> To Subscribe http://home.sprynet.com/~schafer/index.html

> Healing Autism: No Finer Cause on the Planet

>

>

>

>

>

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Guest guest

> In a message dated 2/27/2003 5:41:10 PM Central Standard Time,

> muckelrath@y... writes:

>

> > my Angel

>

> Is your child's name Angel also. My child's name is Angel :)

>

>

>

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  • 3 months later...
Guest guest

Welcome to this listserve . I think you will find everyone here

very helpful. My son is eight(today!) and has had wetting problems off and

on. They have never spontaneously corrected themselves, but required a

positive practice as prescribed by his ABA consultant which basically

consisted of going back and forth from the place he wet to the potty

repeating that we don't pee pee in ____ ,...we pee pee in the potty. Then

he would have to clean himself up and then clean up whatever mess he made

(not that he could do a good job, but he had to at least try). Having

accidents was not worth it and he stopped. I do think though that an

underlying biological problem, like yeast, starts the problem and it would

usually take a bio and behavioral approach to get him straightened out for

the long term. I have found, with my son, that if a biologically caused

problem is corrected only with behavioral approaches, the behavior would

morph into something else.

Joy

Hello

> Hi there I am new to the forum, my name is jennifer and my son's

> name is Daegan who is 11 years old and autistic. Since school has

> been out, he has been a little rebelous. He is wetting and soiling

> his clothes instead of going to the restroom. I was wondering if

> anyone else's child done this? If so what happened & how long did

> this last? Will he get over it?

>

> Thanks!

>

>

>

>

>

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Guest guest

Welcome to this listserve . I think you will find everyone here

very helpful. My son is eight(today!) and has had wetting problems off and

on. They have never spontaneously corrected themselves, but required a

positive practice as prescribed by his ABA consultant which basically

consisted of going back and forth from the place he wet to the potty

repeating that we don't pee pee in ____ ,...we pee pee in the potty. Then

he would have to clean himself up and then clean up whatever mess he made

(not that he could do a good job, but he had to at least try). Having

accidents was not worth it and he stopped. I do think though that an

underlying biological problem, like yeast, starts the problem and it would

usually take a bio and behavioral approach to get him straightened out for

the long term. I have found, with my son, that if a biologically caused

problem is corrected only with behavioral approaches, the behavior would

morph into something else.

Joy

Hello

> Hi there I am new to the forum, my name is jennifer and my son's

> name is Daegan who is 11 years old and autistic. Since school has

> been out, he has been a little rebelous. He is wetting and soiling

> his clothes instead of going to the restroom. I was wondering if

> anyone else's child done this? If so what happened & how long did

> this last? Will he get over it?

>

> Thanks!

>

>

>

>

>

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  • 2 weeks later...
Guest guest

,

Every parent does what they think is best for their child. You have to sit down and weigh the benefits with the costs. Medication is really a big deal right now, many debates across the nation are coming about because of the amount of children being placed on drugs that are not tested for use in children. Many parents feel pressured to give their child medicatoin from schools who dont want to deal with them, and some parents medicate their children for the wrong reasons (not saying you are at all here, just making a point). In the end you have to make your own decision and what fits best with your family. Just like missy said, if you had cancer you would seek out medication. If you have a headache most of us would take medication to get rid of it...so meds are not all bad.. its just a personal choice.

Here is a sight you may want to look at. It lists the drug, its side effects what its used for, and some other good info:

http://www.pinofpa.org/partners/meds.html

I have a really interesting survey that was done by the Autism Research Institute asking parents about different meds and if their children got better, worse, or the same on them. I was amazed at the overall results. Its clear that almost all the medications listed here have mixed results. There is NO one clear cut answer as to which drugs help reduce or make better the side effects that ASD's can cause.. anyway.. Heres the info:

DRUGSNote: For seizure drugs: The first line shows the drug’s behavioral effects; the second line showsthe drug's effects on seizures.

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Aderall 39% 28% 34% 0.9:1 285

Amphetamine 47% 28% 25% 0.5:1 1174

Anafranil 31% 37% 31% 1.0:1 351

Antibiotics 30% 59% 11% 0.4:1 1617

AntifungalsC: Diflucan 7% 42% 51% 7.2:1 185

AntifungalsC: Nystatin 5% 48% 47% 10:1 727

Atarax 26% 53% 21% 0.8:1 443

Benadryl 24% 51% 25% 1.1:1 2512

Beta Blocker 18% 49% 33% 1.8:1 236

Buspar 26% 45% 30% 1.2:1 281

Chloral Hydrate 41% 37% 22% 0.5:1 375

Clonidine 21% 31% 48% 2.2:1 1090

Clozapine 44% 39% 16% 0.4:1 79

Cogentin 19% 53% 28% 1.4:1 149

Cylert 45% 35% 21% 0.5:1 580

Deanol 15% 55% 29% 1.9:1 195

Depakene: Behavior 25% 43% 32% 1.3:1 871

Depakene: Seizures 12% 30% 57% 4.6:1 569

Desipramine 38% 25% 38% 1.0:1 61

Dilantin: Behavior 28% 48% 24% 0.9:1 1049

Dilantin: Seizures 14% 36% 51% 3.8:1 377

Felbatol 26% 45% 29% 1.1:1 38

Fenfluramine 21% 51% 28% 1.4:1 453

Halcion 37% 30% 33% 0.9:1 43

Haldol 37% 27% 35% 0.9:1 1119

IVIG 13% 45% 42% 3.2:1 31

Klonapin: Behavior 28% 33% 38% 1.4:1 156

Klonapin: Seizures 38% 50% 12% 0.3:1 26

Lithium 27% 42% 31% 1.1:1 384

Luvox 28% 36% 37% 1.3:1 120

Mellaril 28% 38% 33% 1.2:1 2023

Mysoline: Behavior 44% 40% 15% 0.3:1 131

Mysoline: Seizures 19% 58% 23% 1.2:1 57

Naltrexone 22% 46% 32% 1.5:1 200

Paxil 27% 28% 45% 1.7:1 192

Phenergan 30% 44% 26% 0.9:1 244

Phenobarbitol: Behavior 47% 37% 16% 0.3:1 1052

Phenobarbitol: Seizures 17% 43% 40% 2.4:1 458

Prolixin 34% 34% 33% 1.0:1 83

Prozac 31% 33% 36% 1.2:1 975

Risperidal 19% 28% 53% 2.8:1 401

Ritalin 44% 26% 29% 0.7:1 3540

Secretin: Intravenous 8% 43% 49% 6.2:1 217

Secretin: Transdermal 12% 47% 41% 3.6:1 78

Stelazine 28% 44% 27% 1.0:1 415

Tegretol: Behavior 24% 45% 31% 1.3:1 1345

Tegretol: Seizures 12% 33% 55% 4.5:1 721

Thorazine 36% 40% 24% 0.7:1 897

Tofranil 30% 37% 33% 1.1:1 698

Valium 36% 41% 23% 0.7:1 788

Zarontin: Behavior 34% 43% 22% 0.7:1 129

Zarontin: Seizures 21% 51% 29% 1.4:1 87

Zoloft 33% 31% 36% 1.1:1 212

BIOMEDICAL/NON-DRUG/SUPPLEMENTS

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Vitamin A 2% 59% 39% 22:1 334

CalciumD 2% 62% 35% 14:1 988

Cod Liver Oil 3% 51% 46% 14:1 411

Colostrum 6% 58% 37% 6.7:1 163

Detox. (Chelation) 3% 28% 70% 27:1 116

Digestive Enzymes 4% 44% 52% 14:1 314

Di-methyl-glycine (DMG) 7% 51% 42% 5.9:1 4547

Fatty Acids 4% 44% 51% 12:1 299

5 HTP 11% 55% 35% 3.3:1 66

Folic Acid 4% 55% 41% 11:1 1100

Food Allergy Treatment 4% 37% 59% 14:1 290

Magnesium 6% 65% 29% 5.2:1 288

MelatoninE 10% 33% 57% 5.9:1 302

Pepcid 9% 61% 30% 3.2:1 64

SAMe 25% 46% 29% 1.1:1 28

St. s Wort 11% 67% 22% 2.0:1 46

Tri-methyl-glycine (TMG) 14% 42% 44% 3.1:1 182

Transfer Factor 18% 51% 31% 1.7:1 39

Vitamin B3 5% 55% 41% 9.0:1 487

Vitamin B6 alone 7% 64% 29% 4.1:1 590

Vitamin B6 & Magnesium 4% 49% 46% 11.1:1 5079

Vitamin C 2% 59% 39% 16:1 1306

Zinc 3% 55% 43% 17:1 835

SPECIAL DIETS

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Candida Diet 3% 45% 52% 18:1 605

Feingold Diet 2% 47% 51% 23:1 645

Gluten- /Casein-Free Diet 4% 33% 64% 18:1 724

Removed Chocolate 1% 50% 49% 36:1 1491

Removed Eggs 2% 61% 37% 21:1 882

Removed MilkProducts/Dairy 2% 51% 48% 30:1 4950

Removed Sugar 2% 51% 47% 24:1 3392

Removed Wheat 2% 53% 46% 26:1 2701

Rotation Diet 2% 50% 47% 20:1 678

A. “Worse” refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).C. Antifungal drugs are used only if autism is thought to be yeast-related.D. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.E. Caution: While melatonin can benefit sleep and behavior, its long-term effects on puberty are unknown.

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  • 9 months later...
Guest guest

Hi Chuck. I'm a/k/a De, outside Atlanta, type 1, stage 1, grade 2, on wk 9 of tx now. Having the time of my life! NOT! Really, my sides aren't too bad. Glad to meet you.

Faith is the ability to not panic.

-----Original Message-----From: chuckhepc Sent: Sunday, April 04, 2004 3:28 AMTo: HepatitisCSupportGroupForDummies Subject: helloHello Group, Some of you here may know me, for those who don't........My name is Chuck and I have Hep C Type 1 a. I have done the interferon and ribiviarin thing and responded .......Then during treatment it came back. Since then I have kind of dropped out of groups and been just pretending this would all go away. So here I am back to the real world.Chuck in Kansas City

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Hi Chuck. I'm a/k/a De, outside Atlanta, type 1, stage 1, grade 2, on wk 9 of tx now. Having the time of my life! NOT! Really, my sides aren't too bad. Glad to meet you.

Faith is the ability to not panic.

-----Original Message-----From: chuckhepc Sent: Sunday, April 04, 2004 3:28 AMTo: HepatitisCSupportGroupForDummies Subject: helloHello Group, Some of you here may know me, for those who don't........My name is Chuck and I have Hep C Type 1 a. I have done the interferon and ribiviarin thing and responded .......Then during treatment it came back. Since then I have kind of dropped out of groups and been just pretending this would all go away. So here I am back to the real world.Chuck in Kansas City

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