Help me!

March 3, 2000

Hi Radha, i think its everyone's wish on this list to tell you something that

will make you better. There's about 300 CFS patient/experts here and

hopefully we'll help you to improve your health with some time. It looks

like you're exploring medication treatment very well. my only advice is that

if you haven't yet, look into diet and health supplements. Two books which

are great in these areas are " From Fatigued to Fantastic " -- Tietlebaum;

and " The Canary and Chronic Fatigue " , --Majid Ali

I know its not great advice when every hour is a struggle for you. My

heart goes out to you and your courage to fight this illness. Good luck to

you and write back soon to let us know how you are doing, or if you have any

questions. --

June 15, 2000

Wow !

First of all it is great to hear you are not leaving. You have always been

such a good friend. Secondly, if you find a way to trace the source of that

email please let me know. My husband is in trouble at work for email that

was sent from his screen name and he didn't send it. We contacted AOL and

they said our email had been compromised but could not tell us by whom.

Please, if anyone knows how to get this info let me know. My husband could

lose his job over this. Thanks.

~Laury

P.S. BTW AOL said that any 13 yr old can access you email account and

password.

June 15, 2000

Where is going?

what's the deal?

Lou

June 15, 2000

Okay Thanks

Lou

June 15, 2000

Now there's the ol' sarge we know and love. hehehe

Go get em buddy!

Jen

June 15, 2000

--Is it really you? Will the really Sarge please stand up! If its

you then YEA!!!!! Taz

- In bodyforlifeegroups, PMNOrlando@a... wrote:

> HELLO???????? This is ,,,,,, I just received an email from

> (CATHYMC920) asking me why I'm leaving the country. I was like

WHAT? I'm not

> going anywhere, she proceded to tell me that I had sent an email to

our group

> that I am leaving the country, moving to Europe, and will not have

internet

> access for a year.

> First of all if I find out who has said this, who has accessed

my

> account, I will personally tear them a new ass.

> SECOND of all, can someone forward the email that was sent to me

so that I

> may do a trace route on the email.

> THIRD - I may be sidelined right now, BUT I GUARANTEE YOU I AM

NOT LEAVING

> THE GROUP NOR AM I OUT FOR GOOD!!!!

> I'll email again but I need want to read the email first and

change my

> password.

> THE REAL PATRICK

> " THE ONE AND ONLY SARGE "

June 15, 2000

-He's not leaving--someone played a not so funny joke. Taz-

- In bodyforlifeegroups, IronmanLouis@a... wrote:

> Where is going?

> what's the deal?

>

> Lou

June 16, 2000

Well, I for one am glad you're not leaving! Hope you figure it out!

June 16, 2000

Sarge, PAtrick, I cannot tell you how happy I am that

you are not leaving. funny cuz just a few days ago I

was saying to myself, " 's gotta go to Vegas in

October so I've gotta get my butt in gear "

Glad the old Sarge (the real sarge is back) This

numbskull who decided to play the prank isn't as much

of a genius as he thinks he is...he's a fool!

I've got my eye out for him again and trust me I now

get notified of EVERY NEW MEMBER. Any bogus looking

email address trying to mimic our own illustrious

group will be DELETED!!!

As for every other member of the group...I hope that

this little distraction remains just that...a " little "

distraction. I apologize on behalf of the founding

members and hope you are not dissuaded from continuing

your great trasnformations. Let's put it aside and get

back to work! Thanks for your membership and support

Angelo

--- PMNOrlando@... wrote:

> HELLO???????? This is ,,,,,, I just received

> an email from

> (CATHYMC920) asking me why I'm leaving the country.

> I was like WHAT? I'm not

> going anywhere, she proceded to tell me that I had

> sent an email to our group

> that I am leaving the country, moving to Europe, and

> will not have internet

> access for a year.

> First of all if I find out who has said this,

> who has accessed my

> account, I will personally tear them a new ass.

> SECOND of all, can someone forward the email that

> was sent to me so that I

> may do a trace route on the email.

> THIRD - I may be sidelined right now, BUT I

> GUARANTEE YOU I AM NOT LEAVING

> THE GROUP NOR AM I OUT FOR GOOD!!!!

> I'll email again but I need want to read the

> email first and change my

> password.

> THE REAL PATRICK

> " THE ONE AND ONLY SARGE "

>

=====

We have the ability to REINVENT ourselves everyday. Tomorrow, why not become

someone stronger, more determined, more confident, more loving, more passionate

about life and more successful?

__________________________________________________

June 16, 2000

I like that !

Jen

March 2, 2002

Hi , I just wanted to say I am sorry to hear about your sweet lil

foster daughter. But I do have some advice, I think its great that

you post on this list for help, but I do not think its very wise to

post your phone #. There are alot of pedophiles and molesters that

may come on this list and use it to locate children. I have been

approved by many weirdos that have fetishes for LP's and sometimes

they are scary. You may just want to leave an email address just to

be precautionary. Hope you find the info your looking for.

~Bonnie

> I am a foster mother, we have a little girl in foster care, she is

2

> yrs. old. Her mother did drugs and drank while pregnant. Doctors

> have tested Kacey for drawfism, she tested negative. She will be 2

> next month March 27th, she has very little hair, doesn't walk,

though

> she is trying. She is 25 1/4 inches tall. She wears size 6 -9

month

> clothes. My question is could the test results be wrong? What can

> we do for her? I wish I knew a little person who could come here

and

> see her, help us. We love her with all our hearts. I don't care

if

> she is 2 feet tall or 7 feet tall, I just want her to be healthy.

> She has no pituatary SP/wr gland or thyrod. She has to take growth

> hormone shots and something called pediapred, she is on synthrod

and

> iron supplements. She is beautiful. Her head is big, feet and

hands

> are tiny. I just need some support.

> Sinecerly,

> Malcomb

> mmalcomb@e... ( best way to get me)

> 740-945-2865 home phone

>

> it would help to know how tall a little person is at age 2 years.

May 9, 2002

I dont know how this came to my e-mail box????

Re: Help me!

Tracey, I have United HealthCare, and they approved it 100%. I used an in

network doctor, Dr. Oh in Federal Way. There are several of us with UHC

who

have gone to Dr. Oh.

Barb S.

-------Original Message-------

Hi everyone,

I know this is not quite the right place, and I have posted a message

on the insurance group... But, does anyone out there with a band know

which insurance companies pay for the band as a general rule? My

employer is looking for a new insurance carrier and I've been asked

to find out who might cover the band so I can get one!

May 9, 2002

Laurie, you're on . She posted on the list, and I replied on

list. If you don't want mail from the list, you'll need to go to

groups and set yourself to nomail/web only.

Barb S.

-------Original Message-------

I dont know how this came to my e-mail box????

October 12, 2005

think remicade drip is next or humira stomach injections. maybe you chose by the

end of those that you've had enough for awhile. Then try something else later.

[Editor's Note: Humira injections do NOT have to be in the stomach, but the

point is that there remain some other good medications out there. Perhaps one

of them will help you. Kathy F.]

tcctyclk <tcctyclk@...> wrote: I saw my rheumy on Fri. and he was upset

about my lack of good

response to months of taking meth. and injecting Enbrel. I am getting

worse instead of better. The arthritis continues to march up from my

feet, through my legs, taking over the knees and aiming to meet the

arthritis in my spine. Also my hands, wrists and shoulders are much

more tender, swollen and stiff. I've had 20 weeks of injecting the

Enbrel along with my weekly dose of 20mg of meth. and my immune system

just seems to be getting stronger instead of weaker. Also, my

psoriasis is spreading with a vengence - everywhere - and I've now

developed IBS to make my life even more interesting.

Can you tell I'm beginning to get desperate? My rheumy says 6 more

weeks of this and then we'll have to find a new treatment. He didn't

give me much hope. He also recommended that I cut back on my work

schedule to take the afternoons off to rest and prop up my swollen

feet and legs. And that's a joke, too, because I am my only means of

support. I work to pay the medical bills and to buy the drugs that

aren't helping.

My question is - What comes after methotrexate and Enbrel? This is

the end of the line for me. Nothing else has helped either. My kids

tease me that I've got the cure for every common disease known to

medical science floating around in my body!

And at what point do you just say enough and quit trying?

October 12, 2005

Have they tried anything besides meth and Enbrel? Have they tried

adjusting the doses? Have they tried doing a medrol dose pack? (a

round of steroids) They have to keep trying different things. You

can't just keep trying the same thing. Gotta switch it up and trick

your body some. I know I never thought we were going to find the

right combonation of drugs. My best pain relief was with voixx

before they yanked it off the market with sulfasalize, and enbrel.

There are other drugs out there worth checking out. Don't give up. I

know what you mean about working to pay for the drugs and paying the

doctors bills, that seems to be my life as well. Good luck, I hope

things get better soon.

Keli

>

> I saw my rheumy on Fri. and he was upset about my lack of good

> response to months of taking meth. and injecting Enbrel. I am

getting

> worse instead of better. The arthritis continues to march up from

my

> feet, through my legs, taking over the knees and aiming to meet

the

> arthritis in my spine. Also my hands, wrists and shoulders are

much

> more tender, swollen and stiff. I've had 20 weeks of injecting

the

> Enbrel along with my weekly dose of 20mg of meth. and my immune

system

> just seems to be getting stronger instead of weaker. Also, my

> psoriasis is spreading with a vengence - everywhere - and I've now

> developed IBS to make my life even more interesting.

> Can you tell I'm beginning to get desperate? My rheumy says 6

more

> weeks of this and then we'll have to find a new treatment. He

didn't

> give me much hope. He also recommended that I cut back on my work

> schedule to take the afternoons off to rest and prop up my swollen

> feet and legs. And that's a joke, too, because I am my only means

of

> support. I work to pay the medical bills and to buy the drugs

that

> aren't helping.

> My question is - What comes after methotrexate and Enbrel? This

is

> the end of the line for me. Nothing else has helped either. My

kids

> tease me that I've got the cure for every common disease known to

> medical science floating around in my body!

> And at what point do you just say enough and quit trying?

>

October 13, 2005

In a message dated 10/12/2005 7:11:38 P.M. Eastern Standard Time,

tcctyclk@... writes:

He also recommended that I cut back on my work

schedule to take the afternoons off to rest and prop up my swollen

feet and legs. And that's a joke, too, because I am my only means of

support. I work to pay the medical bills and to buy the drugs that

aren't helping.

What size company do you work for? Do they have a disability plan? If your

doctor is recommending more rest, and your company has disability, you might

want to consider using that. For me, I was able to take 2 months of paid

FMLA leave when I first got sick, and then when I realized I needed to work

part time, I went on my company's long term disability plan.

Hope that helps,

October 14, 2005

>

> I saw my rheumy on Fri. and he was upset about my lack of good

> response to months of taking meth. and injecting Enbrel. I am getting

> worse instead of better. The arthritis continues to march up from my

> feet, through my legs, taking over the knees and aiming to meet the

> arthritis in my spine. Also my hands, wrists and shoulders are much

> more tender, swollen and stiff. I've had 20 weeks of injecting the

> Enbrel along with my weekly dose of 20mg of meth. and my immune system

> just seems to be getting stronger instead of weaker. Also, my

> psoriasis is spreading with a vengence - everywhere - and I've now

> developed IBS to make my life even more interesting.

> Can you tell I'm beginning to get desperate? My rheumy says 6 more

> weeks of this and then we'll have to find a new treatment. He didn't

> give me much hope. He also recommended that I cut back on my work

> schedule to take the afternoons off to rest and prop up my swollen

> feet and legs. And that's a joke, too, because I am my only means of

> support. I work to pay the medical bills and to buy the drugs that

> aren't helping.

> My question is - What comes after methotrexate and Enbrel? This is

> the end of the line for me. Nothing else has helped either. My kids

> tease me that I've got the cure for every common disease known to

> medical science floating around in my body!

> And at what point do you just say enough and quit trying?

>

Hi. I too would recommend Remicade as the next course of action.

Unfortunately it can be very expensive.

Methatrexate injections always made me ill and I was on prednisone as

well at the time, which is a nasty little drug that I wouldn't

recommend to ANYBODY !

One thing you may have to start considering is that you might not be

able to continue working for long.

I was in Corrections for many years until I could no longer work and

it was a terrible adjustment going on disability as a single parent,

but eventually things smoothed over and now I am much healthier

because my stress levels are almost nil.

It might be wise to start looking ahead at your options in not only

your medication, but your future as well.

Good luck and take care,

Randy

October 14, 2005

>

> I saw my rheumy on Fri. and he was upset about my lack of good

> response to months of taking meth. and injecting Enbrel. I am

getting

> worse instead of better. The arthritis continues to march up from

my

> feet, through my legs, taking over the knees and aiming to meet the

> arthritis in my spine. Also my hands, wrists and shoulders are

much

> more tender, swollen and stiff. I've had 20 weeks of injecting the

> Enbrel along with my weekly dose of 20mg of meth. and my immune

system

> just seems to be getting stronger instead of weaker. Also, my

> psoriasis is spreading with a vengence - everywhere - and I've now

> developed IBS to make my life even more interesting.

> Can you tell I'm beginning to get desperate? My rheumy says 6 more

> weeks of this and then we'll have to find a new treatment. He

didn't

> give me much hope. He also recommended that I cut back on my work

> schedule to take the afternoons off to rest and prop up my swollen

> feet and legs. And that's a joke, too, because I am my only means

of

> support. I work to pay the medical bills and to buy the drugs that

> aren't helping.

> My question is - What comes after methotrexate and Enbrel? This is

> the end of the line for me. Nothing else has helped either. My

kids

> tease me that I've got the cure for every common disease known to

> medical science floating around in my body!

> And at what point do you just say enough and quit trying?

Hello, my nmae is Debbie and enbrel was the first drug I tried

and I had a severe flare up of psoriasis, and it did not help the pa.

I did not have a flare up of p in about two years until I started

enbrel. He took me off of it immediately. I start methotrexate alone

and I am actually feeling better. Its taken a while. Obviously its

not working for you and I would demand being taken off of it, and not

wait 6 more weeks. How long have you been on enbrel and methotrexate.

Debbie in NY

>

October 15, 2005

>

> I saw my rheumy on Fri. and he was upset about my lack of good

> response to months of taking meth. and injecting Enbrel. I am

getting

> worse instead of better. The arthritis continues to march up from

my

> feet, through my legs, taking over the knees and aiming to meet

the

> arthritis in my spine. Also my hands, wrists and shoulders are

much

> more tender, swollen and stiff. I've had 20 weeks of injecting

the

> Enbrel along with my weekly dose of 20mg of meth. and my immune

system

> just seems to be getting stronger instead of weaker. Also, my

> psoriasis is spreading with a vengence - everywhere - and I've now

> developed IBS to make my life even more interesting.

> Can you tell I'm beginning to get desperate? My rheumy says 6

more

> weeks of this and then we'll have to find a new treatment. He

didn't

> give me much hope. He also recommended that I cut back on my work

> schedule to take the afternoons off to rest and prop up my swollen

> feet and legs. And that's a joke, too, because I am my only means

of

> support. I work to pay the medical bills and to buy the drugs

that

> aren't helping.

> My question is - What comes after methotrexate and Enbrel? This

is

> the end of the line for me. Nothing else has helped either. My

kids

> tease me that I've got the cure for every common disease known to

> medical science floating around in my body!

> And at what point do you just say enough and quit trying?

>

Hi - In my opinion...Never quit. I have had this disease for 6 years

now. I have had some really bad times where I just cried but I kept

shuffling (literally) along. My saving grace was my Rheumatoligist.

He is my hero. So I say to you, get a good aggressive doctor who

wants to keep you pain free. That is his goal. I was only 34 when he

first diagnosed me and he swore we would get this disease under

control. We have tried many different drugs and combination of

things. He has fought my insurance company for me to make sure they

cover my treatments. I am now on Remicaid IV therapy every 8 weeks

along with a weekly low dose of methotrexate. He monitors me very

closely and makes sure I am not in pain or having flare ups. I do

have them occaisionally but not like before. I changed my diet to

natural foods. I have lost weight (something I could never do while

on those darn steroids). And I have been going to the gym 5 days a

week for the last 18 months. I work full time and go to school at

night. I have taken my life back. I rule my disease, it does not

rule me. So, please do not give up no matter how tired and in pain

you are and do not be afraid to demand that your doctor aggresively

treat this disease. Sorry for being so long winded. I wish you all

the best, Heidi

[Editor's Note: There are several good medical options after MTX and Enbrel

including Humira and Remicade. New meds are being developed all the time.

There is NO reason to give up the faith! Kathy F.]

March 28, 2006

Get the book 1-2-3 Magic. The technique worked very well with my now 15

year old son. Pam

March 28, 2006

I am sort of a lurker here but I am at my wits end right now and

could use any advise. My son is 6 years old and in a regular school

situation, we even have him doing the same behavior consiquenses as

the other children. They have 3 sticks a green, yellow, red. He

was doing so well, but the past few weeks he has gotten at least two

sticks pulled a day, resulting in a note home that I need to sign.

Three sticks is a phone call home, got one of those today. He used

to care and get upset but as all AS kids do he has adapted and is

emotionless now when it happens,he sees no consequence,only " I will

try again tomorrow. " It is like banging my head against a wall! I

try to vent to my husband but his response is " spank him " yea right

that's going to work and I don't believe in it anyway. I told him

that spanking doesn't do anything and he hangs up on me after

saying " oh yea I am a bad parent " what the hell is that? I am just

in tears over this and don't know what to do, my little guy will be

home in a half hour and I don't know what to do with him, talk yes,

send him to his room? He doesn't care he will spend all day in

there! Help any suggestions will be taken into great

consideration.

Sorry to rant, I just don't have anyone to talk to.

March 28, 2006

I too have a 6 yr old aspie and I definately know how you feel. I do not have

great words of wisdom but I do know that there are good days and bad. In the end

I think you can't look at what happened yesterday but take it one day at a time.

I too have had trouble with my husband understanding that spanking is not the

answer. Our aspie is my nephew that we got custody of a little over a year ago.

The thing that helped me the most was finally getting my husband to go to a dr

appt. I also started to relax and know that Cole's behavior is not going to be

perfect and to take him for what he is. My dh still has trouble understanding

why he wets his pants or why the tv stimulates him beyond control. Hope this

helps. It always helps to know you are not alone!

Lori

carmel_mom2 <bqscrini@...> wrote: