new

[Guest guest]

Hi ,

I am pretty new here too. I don't get to be on here as much as I would

like because I am extremely busy, but I do feel like I can come here

when I need support and to know that I am not alone.

I think it is great that Dr. Phil had a show about Asperger's. I

should write him a letter and tell him that.

My daughter Jenna is 3 almost 4, and she was just diagnosed in Sept.

I have good days and bad days. It is so hard to accept that my child

who I thought would outgrow her strange behavior, isn't going to. It's

not just a phase that will go away, no matter how badly I wish it

were. I want her to have a normal life, and knowing that she is going

to continue to have a rough road, is just hard to deal with sometimes.

Being a parent to an A.S. child is emotionally exhausting anyway, but

when I think about her maybe not having friends as she gets older, or

getting teased, it is often more than I feel I can bear.

That being said, I am a firm believer that God sends these special

kids to special parents. My sister's son has autism, and she is so

amazing with him. I can't think of a better person to be his mother.

So, there are days when I cry, days when I laugh, and days when I am

just thankful that my precious daughter was sent to me and not to

someone else who wouldn't love her as much, or have the patience with

her that she needs.

Hang in there! I know how emotionally difficult this diagnosis is.

Know that you are not alone and the people in this group will be here

for you every step of the way.

(((HUGS)))

- B.

>

> Hi, I am new, my daughter who is 11 was diagnosed today with

Aspergers and I

> had already learned about it from a TV show, actually Dr. Phil and

Im so glad

> I saw it, once I saw it, I realized that is what my daughter had

and I took

> her to be checked and we went through a lot of testing and that is

what she

> has. I broke down crying, I just want to be the best parent I can

be to her,

> thus I joined this group to find support and ideas and just learn.

My name is

> , I have 2 other children and my daughter with Aspergers is .

>

> thanks

>

>

>

>

>

[Guest guest]

, don't give up on your daughter. Even though our kids have

challenges, they can still make progress. When our son was 3 he was

non-verbal, not potty trained, and AGGRESSIVE. Now that he is 12 I

can't get him to hush, he is mainstreamed the majority of the school day

and is rarely aggressive. Things can change for the better.

Tonya

( ) Re: New

Hi ,

I am pretty new here too. I don't get to be on here as much as I would

like because I am extremely busy, but I do feel like I can come here

when I need support and to know that I am not alone.

I think it is great that Dr. Phil had a show about Asperger's. I

should write him a letter and tell him that.

My daughter Jenna is 3 almost 4, and she was just diagnosed in Sept.

I have good days and bad days. It is so hard to accept that my child

who I thought would outgrow her strange behavior, isn't going to. It's

not just a phase that will go away, no matter how badly I wish it

were. I want her to have a normal life, and knowing that she is going

to continue to have a rough road, is just hard to deal with sometimes.

Being a parent to an A.S. child is emotionally exhausting anyway, but

when I think about her maybe not having friends as she gets older, or

getting teased, it is often more than I feel I can bear.

That being said, I am a firm believer that God sends these special

kids to special parents. My sister's son has autism, and she is so

amazing with him. I can't think of a better person to be his mother.

So, there are days when I cry, days when I laugh, and days when I am

just thankful that my precious daughter was sent to me and not to

someone else who wouldn't love her as much, or have the patience with

her that she needs.

Hang in there! I know how emotionally difficult this diagnosis is.

Know that you are not alone and the people in this group will be here

for you every step of the way.

(((HUGS)))

- B.

>

> Hi, I am new, my daughter who is 11 was diagnosed today with

Aspergers and I

> had already learned about it from a TV show, actually Dr. Phil and

Im so glad

> I saw it, once I saw it, I realized that is what my daughter had

and I took

> her to be checked and we went through a lot of testing and that is

what she

> has. I broke down crying, I just want to be the best parent I can

be to her,

> thus I joined this group to find support and ideas and just learn.

My name is

> , I have 2 other children and my daughter with Aspergers is .

>

> thanks

>

>

>

>

>

[Guest guest]

Hi everybody,

We all feel this way. I am an OT and never thought it would be my

child. I feel so badly sometimes yet I think my son is so great.

He is really sweet and special. I just worry others wont see that

because he is a little different. He is in 1st grade and I visited

his school today. In his special ed class he seemed to be way

higher functioning than the other kids but in the regular ed class

you could tell he wasn't quite up to their level as far as academics

and social skills. So I cried the whole way home. His special ed

teacher is really great so i am going to let this year ride and then

see what I want to do about placement next year. Its tough when

they need a small class environment but they are high functioning.

You cant find enough kids that are alike to group them. I tweek

things and evaluate constantly so I can only pray that I am doing

the right thing. We parents are very hard on ourselves because we

care so much.

All my best,

Debbie

[Guest guest]

>Hi , My name is Dee and I also have a eleven year old daughter

with ASD. She was also just diagnosed in the last couple of months. We

have some other things going on besides the asd. Where do you live?

Would your daughter like a pen pal ?Welcome to our group. DEE

> Hi, I am new, my daughter who is 11 was diagnosed today with

Aspergers and I

> had already learned about it from a TV show, actually Dr. Phil and

Im so glad

> I saw it, once I saw it, I realized that is what my daughter had

and I took

> her to be checked and we went through a lot of testing and that is

what she

> has. I broke down crying, I just want to be the best parent I can

be to her,

> thus I joined this group to find support and ideas and just learn.

My name is

> , I have 2 other children and my daughter with Aspergers is .

>

> thanks

>

>

>

>

>

[Guest guest]

In a message dated 11/16/2006 6:32:57 A.M. Mountain Standard Time,

fauxpainting@... writes:

>Hi , My name is Dee and I also have a eleven year old daughter

with ASD. She was also just diagnosed in the last couple of months. We

have some other things going on besides the asd. Where do you live?

Would your daughter like a pen pal ?Welcome to our group. DEE

Hi Dee, we live in Colorado, in Denver, yes my daughter would love a pen

pal!!!!!!!!! Email me direct and we can exchange info! thanks!

[Guest guest]

Hi there! Welcome! The fatigue and weakness if the hardest part for

me to take with RA. I can deal with the pain alot better if I'm not so

tired. Good Luck!

>

> Hi everyone, new here today. Would like to know how many of you

> suffer from debilitating fatigue and weakness with your R.A. ?? I've

> been trying to beef up on vitamins and clean up my diet as well but

> the fatigue is getting the best of me. Only taking methotrexate at

> this time. A friend of mine with R.A. gave me a website,

> rheumatic.org if anyone is interested in checking it out. It deals a

> lot with alternative treatments.

>

[Guest guest]

>

> Hi everyone, new here today. Would like to know how many of you

> suffer from debilitating fatigue and weakness with your R.A. ?? I've

> been trying to beef up on vitamins and clean up my diet as well but

> the fatigue is getting the best of me. Only taking methotrexate at

> this time. A friend of mine with R.A. gave me a website,

> rheumatic.org if anyone is interested in checking it out. It deals a

> lot with alternative treatments.

>I was tested for food allergies at Immuno Labs in Ft. Lauderdale

(check their website for info) as long as I don't eat the foods I'm

allergic to I do better. I also have fibro, and have found a way to

reverse that. I also have fatigue, but do rest between activities, and

I found that if I eat a high protein diet, it's alot better. Too many

carbs puts my out.

good luck,

[Guest guest]

Exhaustion is a major problem for me. I sleep 12 hours in the evening and take

a two hour nap. I will be seeing a physician to get B12 shots. I will notify

you if they help.

applescruff818 <applescruff818@...> wrote: Hi everyone, new here

today. Would like to know how many of you

suffer from debilitating fatigue and weakness with your R.A. ?? I've

been trying to beef up on vitamins and clean up my diet as well but

the fatigue is getting the best of me. Only taking methotrexate at

this time. A friend of mine with R.A. gave me a website,

rheumatic.org if anyone is interested in checking it out. It deals a

lot with alternative treatments.

Raniolo

[Guest guest]

I haven't heard about the B12 shots and that they might help, thanks for

mentioning it. I have a friend who swears by alternative medicine for R.A. but

my insurance won't cover any of it. Anyone out there using alternative methods?

Thanks.

Ring the bells that still can ring,

forget your perfect offering,

there is a crack in everything,

that's how the light gets in!

Re: [ ] NEW

Exhaustion is a major problem for me. I sleep 12 hours in the

evening and take a two hour nap. I will be seeing a physician to get B12

shots. I will notify you if they help.

applescruff818 <applescruff818> wrote: Hi everyone, new here

today. Would like to know how many of you

suffer from debilitating fatigue and weakness with your R.A. ?? I've

been trying to beef up on vitamins and clean up my diet as well but

the fatigue is getting the best of me. Only taking methotrexate at

this time. A friend of mine with R.A. gave me a website,

rheumatic.org if anyone is interested in checking it out. It deals a

lot with alternative treatments.

Raniolo

[Guest guest]

Fatigue is one of my biggest day-to-day problems. It's worse when I'm

flaring... like now. But I haven't really been free of fatigue since

I first strated having symptoms, over a year ago. The meds do help

(well, the Mtx makes me more tired the day I take it, but the rest of

the time is better) but it never completely goes away.

My new rheumatologist tells me it should when we really have it under

control, but it hasn't happened for me yet.

>

> Hi everyone, new here today. Would like to know how many of you

> suffer from debilitating fatigue and weakness with your R.A. ?? I've

> been trying to beef up on vitamins and clean up my diet as well but

> the fatigue is getting the best of me. Only taking methotrexate at

> this time. A friend of mine with R.A. gave me a website,

> rheumatic.org if anyone is interested in checking it out. It deals a

> lot with alternative treatments.

>

[Guest guest]

Hello and Welcome!

Fatigue is a constant problem with RA, and so far, 7

years into it, I have not found anything that really

helps, aside from pacing yourself and resting when you

need to. I was never a napper, but am now, thanks to

RA and fibro. Try to eat healthy, and exercise to the

level you are able to, pace yourself with your

activities, and don't be afraid to ask for help or say

no if you are not feeling up to doing something. Last

minute cancellations happen because we cannot say for

sure how we will be feeling from one day to the next,

and sometimes one hour to the next. It's frustrating,

but it's part of the whole RA journey. Hope this

helps -

Kathe in CA

--- applescruff818 <applescruff818@...> wrote:

> Hi everyone, new here today. Would like to know how

> many of you

> suffer from debilitating fatigue and weakness with

> your R.A. ?? I've

> been trying to beef up on vitamins and clean up my

> diet as well but

> the fatigue is getting the best of me. Only taking

> methotrexate at

> this time. A friend of mine with R.A. gave me a

> website,

> rheumatic.org if anyone is interested in checking it

> out. It deals a

> lot with alternative treatments.

>

>

________________________________________________________________________________\

____

Want to start your own business?

Learn how on Small Business.

http://smallbusiness./r-index

[Guest guest]

Hi New to this as well. Yes fatigue, weakness, depression are just

some of the side effects of RA for me as well. PLEASE check out

Rheumatic.org. Read especially the medical histories from other

sufferers and the results they have had. It's about antibiotic

therapy for arthritis and other conditions. Its working for me also.

It's not so alternative anymore as it has apparently also been

clinically proven to work and is slowly being generally acepted by

the medical profession but with a lot of reluctance. BUt i am not

waiting. I don't take methotexate or sulphasalozine anymore (it

didn't work anyway). Just doxycyclin and a couple of aspirin at

night. Also, read 'The New Arthritis Breakthrough " by Henry Scammell.

You will probably have to order it at your bookstore, but please get

it. It will change the way you view arthritis and i am sure it will

change your life if you try it like it has for many others and

myself.

Chris

>

> > Hi everyone, new here today. Would like to know how

> > many of you

> > suffer from debilitating fatigue and weakness with

> > your R.A. ?? I've

> > been trying to beef up on vitamins and clean up my

> > diet as well but

> > the fatigue is getting the best of me. Only taking

> > methotrexate at

> > this time. A friend of mine with R.A. gave me a

> > website,

> > rheumatic.org if anyone is interested in checking it

> > out. It deals a

> > lot with alternative treatments.

> >

> >

>

>

>

>

>

______________________________________________________________________

______________

> Want to start your own business?

> Learn how on Small Business.

> http://smallbusiness./r-index

>

[Guest guest]

Hi there

Tell your hubby there is hope. He will find the right combo of meds

for himself and it will work out. Not to give up and try all avenues.

Support groups are wonderful too.

I would wait and not borrow trouble with your dd. If she starts

showing symptoms then get her tested but I wouldn't worry right now

concentrate on him and just remember to give him support and space

when he needs it. I see myself that some days are better than others.

Good luck and welcome,

Joy

csigal04 <csigal04@...> wrote:

Hello, my husband as just found out that he has RA and Lupus. He's not

taking it very well, he's at the begining stages where he just got on

medication. The doctor told him that it would take around 2 months for

the medicine to kick in. He complains of hurting, everyday it is

always something. I can't empathize what he is going through. I try to

be uplifting and encouraging but I don't feel that I'm saying the

right things. We also have an 8 month old daughter, which he is

concerned that she too will get an autoimmune disease. He wants to get

her checked out, but from what I have read that children won't usually

get it until puberty. I have also suggested that he get in touch with

a support group, but he's not really warming up the idea. I would

appreciate any advise from the group.

Thank you.

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

Hello, and Welcome~

How wonderful of you to come here for your husband - I

am sure that you are having a hard time of this as

well, because he has always probably been the one who

you leaned on, and now he is leaning on you. The

roles kind of get reversed in these cases. He needs

you now more than you will ever know, and he needs

your support and love more than any sympathy.

It will be a few months before the medications do kick

in - what meds has he been given? It is rare to have

both lupus and RA - how was he diagnosed? Make sure

that he gets a lot of rest - rest will help lower his

stress level and make him more able to cope with the

pain. Does he have a lot of pain and swelling in his

joints? Reach out to help him when he needs it, or

ask if he does, but don't try to do everything for

him.

My husband sometimes treats me as if I will break if I

carry anything lol, it's nice, but I can handle it,

and if I cannot, I will ask for help.

He can come here and talk to us anytime he wants, we

have some very wonderful men here in this group, and

maybe he would be able to get the man's view on all of

this he is going through. It's not easy to suddenly

not be able to comb your hair, put on your clothes,

open a door, etc., and it will definately begin to

show in his personality - he is not getting upset with

you or your sweet baby, he is simply going through the

stages we all go through. Denial, anger, grief,

depression, and then finally an acceptance of sorts.

It will take time. Simply be there for him just as

you are now. We are here for the family too.

There is really no way to check a baby to see if they

will get autoimmune disease in the future - and there

is a very good chance that she will not inherit

anything he has, and if that should come in the

future, by then we will hopefully have a cure for all

of this. Tell him not to worry about her, just take

care of himself so that he can be the best father he

can for her now and in the future.

Please encourage him to join in - there is much

information to be learned, and a lot of experience

here in this group with just about everything these

diseases have to offer. Hang in there -

Kathe in CA

>

__________________________________________________

[Guest guest]

Hello! I am new here as well altho I have had RA for 22 years and

have had Fibromyalgia for 18 years. I do find that weakness and

fatigue are a huge problem but since I found out that I was not

getting enough deep REM sleep. I must admit things have improved a

little. Because of continuous pain and my dislike of taking pain meds

regularly, I was not getting enough really deep sleep to allow my body

to relax. I take sleeping pills on occassion now to help with that

altho my fear of addition keeps me from taking them regularly, I still

notice a difference in how I feel by getting a couple on nights a week

of deep sleep. Talk to your Drs. about this again and again if

neccesary in order to get them to take you seriously. Good luck!

[Guest guest]

Hello & welcome to the group.

This is Steph in Virginia. I am so sorry to hear about your hubby's

diagnosis (dx). I'm 29 and was dx'd with JRA in 1999 when I was 22 and in

college. My current meds are: Ibuprofen, Prednisone, Azulfidine, Folic Acid,

Methotrexate, Flexerill & Remicade. I have also tried Celebrex, Vioxx, Naproxyn

& Vicodin.

There is a great website to help you understand how autoimmune illnesses

affect a body. Visit www.butyoudontlooksick.com. Check out The Spoon Theory.

By the way, it is a myth that you don't get RA until puberty. Children can

be dx'd as early as 6 months. Doctors are trained to see the signs. I imagine

this is impossible to do, but try not to worry. For example, my mom has RA in

her family (she has only recently developed it at 57 years old). She has asthma

& my dad has psoriasis. Their genes combined are most likely the reason for my

RA. (ironically, at 22 years old I was dx'd with Juvenile RA even though I

finished puberty when I was 12). Additionally, my rheumy & ob/gyn do not have

any concerns about my passing RA onto my future children.

Take care,

Steph in VA

Hello, my husband as just found out that he has RA and Lupus. He's not taking

it very well, he's at the begining stages where he just got on medication. The

doctor told him that it would take around 2 months for the medicine to kick in.

He complains of hurting, everyday it is always something. I can't empathize what

he is going through. I try to be uplifting and encouraging but I don't feel that

I'm saying the right things. We also have an 8 month old daughter, which he is

concerned that she too will get an autoimmune disease. He wants to get her

checked out, but from what I have read that children won't usually get it until

puberty. I have also suggested that he get in touch with a support group, but

he's not really warming up the idea. I would appreciate any advise from the

group.

Thank you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

__________________________________________________

[Guest guest]

I am also suffering from severe RA among other things. I am unable to take

celebrex due to an allergic reaction. I was going to start another medicine but

my medical will not cover it and I cannot afford it. Right now I am taking

Advil and Advil P.M. when necessary for the pain and it works.

[Guest guest]

Steph-

Out of curiosity, why is your doctor not concerned about your passing it on to

your kids? I worry about that. I have RA and hashis and endometriosis and my

husband was just diagnosed with hashis. I'm worried about passing any autoimmune

disease on to my kids.

Thanks!

Bridget

DeNicola- <stephdenicola@...> wrote:

Hello & welcome to the group.

This is Steph in Virginia. I am so sorry to hear about your hubby's diagnosis

(dx). I'm 29 and was dx'd with JRA in 1999 when I was 22 and in college. My

current meds are: Ibuprofen, Prednisone, Azulfidine, Folic Acid, Methotrexate,

Flexerill & Remicade. I have also tried Celebrex, Vioxx, Naproxyn & Vicodin.

There is a great website to help you understand how autoimmune illnesses affect

a body. Visit www.butyoudontlooksick.com. Check out The Spoon Theory.

By the way, it is a myth that you don't get RA until puberty. Children can be

dx'd as early as 6 months. Doctors are trained to see the signs. I imagine this

is impossible to do, but try not to worry. For example, my mom has RA in her

family (she has only recently developed it at 57 years old). She has asthma & my

dad has psoriasis. Their genes combined are most likely the reason for my RA.

(ironically, at 22 years old I was dx'd with Juvenile RA even though I finished

puberty when I was 12). Additionally, my rheumy & ob/gyn do not have any

concerns about my passing RA onto my future children.

Take care,

Steph in VA

Hello, my husband as just found out that he has RA and Lupus. He's not taking it

very well, he's at the begining stages where he just got on medication. The

doctor told him that it would take around 2 months for the medicine to kick in.

He complains of hurting, everyday it is always something. I can't empathize what

he is going through. I try to be uplifting and encouraging but I don't feel that

I'm saying the right things. We also have an 8 month old daughter, which he is

concerned that she too will get an autoimmune disease. He wants to get her

checked out, but from what I have read that children won't usually get it until

puberty. I have also suggested that he get in touch with a support group, but

he's not really warming up the idea. I would appreciate any advise from the

group.

Thank you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

__________________________________________________

[Guest guest]

Hi Bridget,

I wasn't aware that you also have autoimmune illnesses. My doctor isn't

too concerned about me passing RA onto my future children because my husband,

amazingly, doesn't have many illnesses in his family. I have lots of illnesses

in my family. However, RA is not a dominant gene. My rheumy has suggested that

I get an ob/gyn that specializes in high risk pregnancies. Other than being

aware and getting genetic counseling, he doesn't believe we can predict me

passing RA onto my future children anymore than my parents could predict I would

get RA. My mom has COPD, asthma & hepatitis and my dad has diabetes, high blood

pressure & cholestrol & has had 3 heart attacks. I'm the healthiest person in my

family!

Take care,

Steph in VA

Steph-

Out of curiosity, why is your doctor not concerned about your passing it on to

your kids? I worry about that. I have RA and hashis and endometriosis and my

husband was just diagnosed with hashis. I'm worried about passing any autoimmune

disease on to my kids.

Thanks!

Bridget

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

__________________________________________________

[Guest guest]

Hi Joyce

Glad you made it on but sorry to hear about the insurance

problem. What a horrible joke. Diabetes is a terrible disease

but so is RA and I can't see how they can say that.

So do you think the orencia really helps you?

I have a rapid heart beat too. I take Toprol XL for that.

Hugs,

Joy

J A MANDLE <jamandle@...> wrote:

Hello everyone, my name is Joyce.

This group was recommended to me by Joy. I have been lurking the past two weeks

to get up my nerve to write this letter.

I have been diagnosed with RA for about 30 years. Just after the birth of my

second child the symptoms started to show. The nightmare of having a 3 yr. old

and a 2 month old and suddenly losing the use of an arm due to the intense pain

in my shoulder or to suddenly have that pain go away and have it manifest in my

knee, etc. I've had it in my sternum, the balls of my feet, and even my jaw. My

arms are bent at the elbow. So I can relate to the confusion, uncertainty, and

worry that many people first face with RA. I have tried almost every med. I had

the gold shots for a while. A few months after I stopped the gold I ended up in

the hospital with my liver functions off the wall (This was about 25 years ago).

As a result they are very careful with my meds. My doctor wouldn't let me use

Methotrixate(?) because of my liver.

I just had a total knee replacement(TKR) done Oct. 4. I had just started Orencia

and had to go off of that and compensate with a prednisone. Both my knees are

bone on bone. My left knee was so bad (Valgas deformity or knock kneed) that the

surgeon said at the time of the surgery the part of my leg below the knee

instead of being in a straight line with the upper part of my leg was at a 45

degree angle to the rest of my leg. The surgeon did a great job and now my leg

is straight and my left knee works great. Now it's just a case of how long I can

go before I have to have the TKR of my right knee.

Now I have to start weaning myself off of the 20mg a day of prednisone. I am

down to 10mg. I also take 200mg of celebrex, 400mg plaquenil, 1000mg of

azulfadine plus the Orencia. For my blood pressure I take monopril and I also

have restless legs syndrome (RLS) and so far tramadol and neurontin in

combination work for the RLS. I also have a rapid heart beat. My pulse is

usually about 120. The doctor just gave me metoprolol about 2 weeks ago and when

I went for the orencia today my pulse was down to about 100.

Two weeks from now I hope to be able to go back to work. Since I have

osteoporous I am taking calcium tablets. Currently my biggest problem is that I

have scoliosis of the spine. So if I stand or walk for longer than 5 minutes the

pain in my lower back becomes intolerable. Thankfully I work as a receptionist

in the mortgage department of a bank, so I can do a large percentage of my job

sitting down.

My current insurance co. has a program where for chronic diseases such as

diabetes you can get a 3 mo. supply of meds but only pay for 2. Yet for celebrex

and other RA meds they wouldn't do it. So I called and asked why - their answer

was - RA IS NOT A CHRONIC DISEASE. HELLO, I've had it for over 30 years everyday

and that's not chronic?

Thanks for listening to me babble. Take care, Joyce

[Guest guest]

Welcome, Joyce!

Sorry you've had to deal with RA for so long.

RA not a chronic disease? A bunch of geniuses at that company. Money-saving

geniuses.

Not an MD

[ ] New

> Hello everyone, my name is Joyce.

>

> This group was recommended to me by Joy. I have been lurking the past

> two weeks to get up my nerve to write this letter.

>

> I have been diagnosed with RA for about 30 years. Just after the birth

> of my second child the symptoms started to show. The nightmare of having

> a 3 yr. old and a 2 month old and suddenly losing the use of an arm due to

> the intense pain in my shoulder or to suddenly have that pain go away and

> have it manifest in my knee, etc. I've had it in my sternum, the balls of

> my feet, and even my jaw. My arms are bent at the elbow. So I can

> relate to the confusion, uncertainty, and worry that many people first

> face with RA. I have tried almost every med. I had the gold shots for

> a while. A few months after I stopped the gold I ended up in the hospital

> with my liver functions off the wall (This was about 25 years ago). As a

> result they are very careful with my meds. My doctor wouldn't let me use

> Methotrixate(?) because of my liver.

>

> I just had a total knee replacement(TKR) done Oct. 4. I had just started

> Orencia and had to go off of that and compensate with a prednisone. Both

> my knees are bone on bone. My left knee was so bad (Valgas deformity or

> knock kneed) that the surgeon said at the time of the surgery the part of

> my leg below the knee instead of being in a straight line with the upper

> part of my leg was at a 45 degree angle to the rest of my leg. The

> surgeon did a great job and now my leg is straight and my left knee works

> great. Now it's just a case of how long I can go before I have to have

> the TKR of my right knee.

>

> Now I have to start weaning myself off of the 20mg a day of prednisone.

> I am down to 10mg. I also take 200mg of celebrex, 400mg plaquenil,

> 1000mg of azulfadine plus the Orencia. For my blood pressure I take

> monopril and I also have restless legs syndrome (RLS) and so far tramadol

> and neurontin in combination work for the RLS. I also have a rapid heart

> beat. My pulse is usually about 120. The doctor just gave me metoprolol

> about 2 weeks ago and when I went for the orencia today my pulse was down

> to about 100.

>

> Two weeks from now I hope to be able to go back to work. Since I have

> osteoporous I am taking calcium tablets. Currently my biggest problem is

> that I have scoliosis of the spine. So if I stand or walk for longer than

> 5 minutes the pain in my lower back becomes intolerable. Thankfully I

> work as a receptionist in the mortgage department of a bank, so I can do a

> large percentage of my job sitting down.

>

> My current insurance co. has a program where for chronic diseases such as

> diabetes you can get a 3 mo. supply of meds but only pay for 2. Yet for

> celebrex and other RA meds they wouldn't do it. So I called and asked

> why - their answer was - RA IS NOT A CHRONIC DISEASE. HELLO, I've had it

> for over 30 years everyday and that's not chronic?

>

> Thanks for listening to me babble. Take care, Joyce

[Guest guest]

Hi Joyce,

Does your insurance use Medco for its mail order? My insurance switched

from Express Scripts to Medco. Medco told me that the only meds automatically

approved for mail order are heart pills (ok), cholestrol (ok), diabetes (ok) and

.... wait for it Erectile Dysfunction!!!!! You know a man is in the decision

making role at Medco! I can easily get my meds approved for mail order but I

stopped using them on principle!!

Take care,

Steph in VA

My current insurance co. has a program where for chronic diseases such as

diabetes you can get a 3 mo. supply of meds but only pay for 2. Yet for celebrex

and other RA meds they wouldn't do it. So I called and asked why - their answer

was - RA IS NOT A CHRONIC DISEASE. HELLO, I've had it for over 30 years everyday

and that's not chronic?

Thanks for listening to me babble. Take care, Joyce

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Never underestimate the power of a small, dedicated group of people to change

the world -- indeed, it's the only thing that ever has. " (Margaret Mead)

AmeriCorps Alums -- We're Still Getting Things Done

__________________________________________________

[Guest guest]

My insurance co. is Oxford in NJ. And the mail order is Medco. I believe this

is the only one Oxford uses. Joyce

[Guest guest]

Hi Lois,

Welcome! If you do a search on me, Axe, or Bestbirths2006, or my posts

that say " Update on Child #1 " you will find updates on our sixteen year old who

is now seventeen. Chelation has worked wonders for him.

We have had some roadbumps in the past five months where he has spent 3 months

over living with another friend. This wouldn't have happened if he hadn't of

chelated and became more independant. He did lots of chelating over there, but

wasn't always consistant taking his supplements. There are difficulties with an

older child once they start to get better it seems like it is harder to get them

to comply (at least w/ mine). I have a feeling if we don't tighten up the

slacking he could lose the gains he's made.

He's driving and going out, when before he had a OCD fear of leaving the house.

He is way more social and verbal and is learning independent living skills where

before chelation, we thought we would not be able to live independantly of us.

During this last round of chelation mid round he says that his supplements make

him sick and he refuses to take them. Well, #1 this is a gain because mostly

before I would just have to guess at if supplements were working because he

doesn't usually give me much information. So, mid round I am scrambling because

he is hiding his supplements. What I did was quickly refer to andy's books on

the bare bones of supplements to give, and give him just those and he is doing

fine and agreeing to take those. This could also maybe mean a gain that he no

longer needs as many supplements as we were giving him. He has been chelating

since Feb of last year and is taking 100mg dmsa/ala. It took this long to get

to that dose, and I think we are seeing noticeable gains each round, if we can

do them no farther apart than 2 weeks, and get more consistant with supplements,

and if he will be more consistant with the enzymes. Plus, we have to keep yeast

under control too. We have to stay on top of all of this to see gains.

[Guest guest]

Rough in the beginning but as you see that you need to do this and he is

getting help it becomes less overwhelming. You can do it and so can he.

Repeat that over and over until you believe it and do not ever

underestimate him. There will be too many people in his life doing that

already so he'll need your belief in him to sustain him. Stay on this

board and you'll get what you both need. If you need to talk, email me.

I'll do what I can to smooth your transition. Those of us in this brave

new world must stick together and we will prevail and our kids will do

well. There is no other way to look at this!

melissa wrote:

>hey i'm new just found out my 2yr old has apraxia and low muscle tone

>we have been told now we have to go to fortnightly appointments is it

>normal for me to feel so overwhelmed and will things get easier

>

>

>

>