New member Introduction

[Guest guest]

Hi , nice to hear from a fellow Ontarian. I'm in Ottawa. Was diagnosed

last Feb (1999). I'm on Celebrex and Sulfasalazine.

See ya around, .

>From: " john bulanda " <jbulanda@...>

>Reply- onelist

> onelist

>Subject: [ ] new member introduction

>Date: Tue, 08 Feb 2000 12:15:58 PST

>

>Hello members,

>

>I am thirty nine years old and live in Ontario, Canada. Three weeks ago I

>was dignosed with PA. It was quite a shock to hear this but its good to

>finally find out what was wrong with me.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Dear ,

I would suggest that you ask your questions to Dr. Goldberg directly. You

can do that by going to www.neurommunedr.com go to the conference area and

register, from there go to " Ask Dr. Goldberg " , and repost your situation

written below. He normally responds within 4 weeks, he doesn't email you

back personally, so you just have to check the column periodically. I wish

you the best of luck and I sure hope he can help you. If you are in Southern

California there is probably a very good chance that he could see you fairly

quickly due to last minute cancellations.

New member introduction

hello everyone,

My name is and somehow I found this web group last night. I signed up

hoping to share experience and insight. I don't even know if my daughter's

condition falls under the heading of .

So... lets see what you all think.

My daughter, a, was 18 months old when she was stricken with a cancer

called neuroblastoma.. The way we found out was that over a few days she

lost

all her motor skills, her eyes were jiggling, EXTREME EXTREME vertigo and

EXTREME aggitation. We came to find out that her immune system targeted her

tumor but, it in the process cross connected with her brain. Hence, under

the brain being attacked it caused the motor problems and later cognitive

and

severe speech delays.

To make a long story short she went through five years of heavy immune

suppression to prevent further brain damage and eventually an experimental

bone marrow transplant (with her own cells) to cure the immune system from

attacking her brain. It's been 2.5 years since the transplant and her brain

is not being attacked. But.... and there's always a but.... there has been

long term damage. All her motor skills are intact but, her learning, speech

and behavior have been nothing less than a challenge.

She's 7 years old and her cognitive is that of a 4 year old and her speech

is

around a 3 year old. She's able to get her communication across but, the

sentence structure, articulation, repeating over and over again, and

stuttering hinder her ability to freeflow communication. She has a big dose

of ADHD with OCD and bipolar tendencies. She does have some OT issues but,

they are minimal. She receives OT therapy to help organize her thinking.

Her original psych was excellent in explaining that those that have brain

injury often times have the behavioral problems on top of the " classic "

brain

damage issues like cognitive, motor and speech.

She's in a special ed program and receives medication for her behavior.

Without the meds she can't learn, sit down or enjoy being in her own skin.

Her current meds are:

erithomycin, seroquel, clonidine, zyrtec, flonase, flax seed oil,

acidopholus, senna

Overall she's a very animated beautiful little girl that truly faces the

world as if nothing is wrong with her. The one benefit of being sick all

her

life is that she really doesn't know anything else. She's also fiesty,

stubborn and charming.

So, does any part of our experience fall into anyone elses??

PS- for the life of me I can't remember a supplement from the vitamin store

that is said to help reverse some brain damage. Anyone here try this with

any sort of success?

Thanks,

, mom to a dx: Neuroblastoma and Opsoclonus-Myoclonus Syndrome

In California

" Sometimes you get shown the light in the strangest of places if you look at

it right "

,mom to -a 7 (nbII with oms 11/96), Kelsey 10, and 14. Wife

to

-<A HREF= " http://www.pilink.com/page/stinaboleeena/ " >Miss Stina Boleeena's

Updates</A>-

{{{{{{{

[Guest guest]

Hello, , and thank you for sharing your story. You sound like a wonderful

mom and a sounds like a treasure! Based on what you shared with us, I

would guess that might be at least a part of what your little girl is

experiencing with her language and behavior issues. Most of the children with

have not had nearly the level of health issues as a, however, it

seems to me that with the beating her immune system took so early in life, at

least a part of her cognitive functioning and behavior issues could be caused by

-type illness. I would recommend you consult with Dr. Goldberg (he's in

Tarzana, which is in the Los Angeles area 818/343-1010) as to how much he thinks

the protocol could help her. If you can get her immune system functioning

optimally, perhaps some or even a lot of the damage can be reversed. Best of

luck!

Donna, mommy to , 4.3, dx: ASD

New member introduction

hello everyone,

My name is and somehow I found this web group last night. I signed up

hoping to share experience and insight. I don't even know if my daughter's

condition falls under the heading of .

So... lets see what you all think.

My daughter, a, was 18 months old when she was stricken with a cancer

called neuroblastoma.. The way we found out was that over a few days she lost

all her motor skills, her eyes were jiggling, EXTREME EXTREME vertigo and

EXTREME aggitation. We came to find out that her immune system targeted her

tumor but, it in the process cross connected with her brain. Hence, under

the brain being attacked it caused the motor problems and later cognitive and

severe speech delays.

To make a long story short she went through five years of heavy immune

suppression to prevent further brain damage and eventually an experimental

bone marrow transplant (with her own cells) to cure the immune system from

attacking her brain. It's been 2.5 years since the transplant and her brain

is not being attacked. But.... and there's always a but.... there has been

long term damage. All her motor skills are intact but, her learning, speech

and behavior have been nothing less than a challenge.

She's 7 years old and her cognitive is that of a 4 year old and her speech is

around a 3 year old. She's able to get her communication across but, the

sentence structure, articulation, repeating over and over again, and

stuttering hinder her ability to freeflow communication. She has a big dose

of ADHD with OCD and bipolar tendencies. She does have some OT issues but,

they are minimal. She receives OT therapy to help organize her thinking.

Her original psych was excellent in explaining that those that have brain

injury often times have the behavioral problems on top of the " classic " brain

damage issues like cognitive, motor and speech.

She's in a special ed program and receives medication for her behavior.

Without the meds she can't learn, sit down or enjoy being in her own skin.

Her current meds are:

erithomycin, seroquel, clonidine, zyrtec, flonase, flax seed oil,

acidopholus, senna

Overall she's a very animated beautiful little girl that truly faces the

world as if nothing is wrong with her. The one benefit of being sick all her

life is that she really doesn't know anything else. She's also fiesty,

stubborn and charming.

So, does any part of our experience fall into anyone elses??

PS- for the life of me I can't remember a supplement from the vitamin store

that is said to help reverse some brain damage. Anyone here try this with

any sort of success?

Thanks,

, mom to a dx: Neuroblastoma and Opsoclonus-Myoclonus Syndrome

In California

" Sometimes you get shown the light in the strangest of places if you look at

it right "

,mom to -a 7 (nbII with oms 11/96), Kelsey 10, and 14. Wife

to

-<A HREF= " http://www.pilink.com/page/stinaboleeena/ " >Miss Stina Boleeena's

Updates</A>-

{{{{{{{

[Guest guest]

In a message dated 07/16/2002 12:34:47 PM Eastern Daylight Time,

pugnfriend@... writes:

> As hard as some

> people fight to get on disability, that is how hard I will fight to be able

> to continue working.

Hi Kathy - I feel the same way about work, but some days it is so hard not to

give in to those aches and stay in bed! I'm so sorry about your losses with

the NYC disaster. How stressful that must have been - did you find that your

PA kicked up at that time? Stress from work is very difficult for me to

manage (I'm a controller at a luxury automobile dealership) and I am always

more achy around the time financial statements are due!

As far as the subway steps, is there another mode of transportation you could

use? Like the bus maybe? I find it very hard to get out of my car when I

get home and just walk up the six steps to my townhouse, so I don't know how

you manage the subway steps. I use a walker sometimes when I need it (even

at work now sometimes) but it isn't much use on steps. Maybe a cane would

help. They make folding canes so you could carry it in a bag and wouldn't

have to use it at work if that bothers you. Until I started using the

walker, no one at work except for one person really knew what was wrong with

me, so of course they all asked when I came in with the walker. It was hard

for me to use it at work because I knew this would happen, but it became

necessary so I explained it as simply as I could ( " My arthritis is acting up

and my hip hurts too much if I don't use the walker " ). Do they know at your

work that you have PA and understand it?

Anyway - I'm getting a bit to lengthy here, so I'll close. Glad you joined

us and hope to read more from you, Kathy

Take care,

[Guest guest]

I know what you mean by this. I to want to work. I have applied for disability.

I cannot even open my pill bottles due to the pain and loss of strength in my

hands. Bathing myself is a painful thing to do and then to put the dovonex on my

ps is more painful. If I dont have to do anything more than just sit around not

using my hands I am not in much pain but doubt that anyone would hire me. My

left foot not only is swollen so bad it is uncomfortable on the top but the

bottom also swells up so it feels like I am walking on something. I loved

working as it kept my mind busy and I could get out and talk to others. Now I am

basically stuck at home. Driving is a problem as I can only use my left hand. it

is also getting more painful and weak but I rest my right hand on the wheel to

help steer. I never thought the day would come that I would want to work but

could not. I hope you keep on working for a long long time.

Oh yea. I forgot. Welcome to the group.

As hard as some people fight to get on disability, that is how hard I will fight

to be able to continue working.

---------------------------------

[Guest guest]

Hello Kathy,

Welcome to this group. I'll hope you continue to use the group to

vent, ask questions and post. I'm sorry to hear how tough the last 2

years have been for you. Stress is definitely a big problem with

arthritis. It may be helpful to know that you could have RA and PA

together. The reason it would be helpful is because insurance tends

to cover RA better than PA. In either case, you should discuss with

your doctor the possibilitiy of getting on Enbrel or Remicade. You

might find this really helps and extends your ability to work.

They'll make you give MTX a try for a while though first.

So is there any possibility that NYC has services for people with

disabilities? Perhaps you could find a better way to get to work.

Remember that over-exerting a joint can lead to further damage like

joint deterioration, tendon rupturing or tendon tears (depending on

where the disease is hitting). So it's a really good idea to

use " joint protection " . It's worth investigating.

Best wishes,

Meghan

> Apart from the PA, I am reasonably healthy. I have high blood

pressure, but

> that has been well-controlled thanks to daily medication. As hard

as some

> people fight to get on disability, that is how hard I will fight to

be able

> to continue working. I enjoy it and it is mentally stimulating and

> challenging. It provides me with a reason to get out of bed in the

morning.

> It helps me to feel confident and it takes my mind off my aches.

Riding NYC

> subways is another matter, and the subway steps are at times quite

daunting

> for me to negotiate. There are many days where I honestly don't

think I can

> get up the stairs, but I tell myself I can and that I must and so I

do. I

> realize the time may come when I cannot work, but I won't go

gently. Once a

> week, I take an aquatics for arthritics class at the Y and on

summer

> weekends, I swim a lot in our pool at our beach house. The salt

water in the

> ocean feels great, too, but it is still a bit on the cold side for

me.

>

> Well, that's my disease/lifestyle history. Once again, I thank all

of you so

> much for all the caring and insights you offer. The amazing

kindness of

> strangers! If misery loves company, you are a wonderful group to

rub elbows

> (chafes, scales and all) with.

>

> Regards,

> Kathy Friend

>

>

>

>

[Guest guest]

Hi ,

I appreciate all the wonderful suggestions. My " concession " to PA is that I

take a taxi to work but I stubbornly refuse to take one going home. I guess I

fear that if I stop forcing myself to climb the subway stairs, the day will

quickly come when I won't be able to climb stairs at all. Does that make sense?

It's the same with going to work - I fear that if I stop working, I will have

admitted defeat. I know that's not right, of course, but I just can't let

myself ease off just yet. I was on crutches for 8 months and didn't skip a

day's work. Unlike so many of the people on this list, I am lucky that I have

not progressed to the point where going to work is unbearable and impossible.

My heart aches for those who are in such straits. I like your suggestion,

though, about the cane. I have one, but instead of using it only on " bad " days,

I should probably acknowledge that using it now would help me stay mobile.

Yes, I have no doubt that stress makes the symptoms much worse. I am glad your

workplace is understanding. My colleagues are supportive, as well, and would

help me more if I asked them to. For a stubborn goat like me, I think a list

such as this can help me to learn to accept my shortcomings and physical

limitations more gracefully. It also helps to know that we are not alone and

that we are not weak because we can't do something.

Thanks, again, . I am awfully glad to have found all of you!

Kathy

> > As far as the subway steps, is there another mode of transportation you

could

> use? Like the bus maybe? I find it very hard to get out of my car when I

> get home and just walk up the six steps to my townhouse, so I don't know how

> you manage the subway steps. I use a walker sometimes when I need it (even

> at work now sometimes) but it isn't much use on steps. Maybe a cane would

> help. They make folding canes so you could carry it in a bag and wouldn't

> have to use it at work if that bothers you

[Guest guest]

Hi Sunnie,

Thanks for the welcome. I can but imagine how difficult it must be for

people like you who have become seriously disabled by this disease. It

sounds as if so many things that I still take for granted (like driving) are

a struggle for you. It is insane that you should also have to fight to

receive disability which is, after all, insurance you paid for, not charity.

I hope you find some relief soon.

Kathy

> I know what you mean by this. I to want to work.

[Guest guest]

Hi Meghan,

Thank you for the welcome and for the additional information. My rheumy told

me that I likely DO have both RA and PA but given the rapid appearance of PA

symptoms (the scaling, indented fingernails, etc.,), he felt that PA was

probably the cause for the recent deterioration in my mobility. I asked him

about both Enbrel and Remicade (thanks to this list!). He told me that I was

not at that stage yet. He wanted me first to go the MTX route and then we'll

re-evaluate. He said he would rather we start on a medicine regimen than is

too weak and build up the arsenal, than we start out with the heavy artillery

when a smaller weapon might have sufficed. Such militaristic talk, huh?

Logically, I agree with him and I know that as bad as I feel some days, I am

so much better off than I could be so the " big stuff " is probably best

reserved for a future day.

NYC has some wonderful paratransit facilities for the disabled. The only

problem is that there aren't enough of them and people can wait a long time

for the paratrans vehicles to show up. Traffic, particularly post 9-11, has

also been very unpredictable and has delayed the paratrans services

frequently. I could certainly take a taxi or even drive to work and pay for

parking ( over $30 a day in midtown Manhattan), however, I want to keep using

the physical capacity I have for as long as I can. I am concerned that if I

stop climbing stairs, I will atrophy and will become unable to climb stairs.

While it is a struggle to climb them now and the process isn't always pretty,

I can still manage to get to the top sooner or later. I hear what you are

saying about doing real damage, though, from forcing the issue too much. I

hadn't really looked at it from that perspective. You have given me much to

think about.

Once again, thank you for the suggestions and for the moral support.

Kathy

> <It may be helpful to know that you could have RA and PA

> together. The reason it would be helpful is because insurance tends

> to cover RA better than PA. In either case, you should discuss with

> your doctor the possibilitiy of getting on Enbrel or Remicade.

So is there any possibility that NYC has services for people with

disabilities?>

[Guest guest]

Kathy,

Just to toss in my two cents on the stairs concept. I took quite a while

coming to grips with the idea that my mobility was becoming more and more

limited. I finally got to the place where I could no longer safely climb

stairs. I finally grasped the idea that I was in more danger from a fall

than anything I felt I could gain by still doing the stairs.

For me, that acceptance meant leaving my lovely second floor 2 bedroom apt.

with a delightfully private balcony, to move to a first floor " handicapped

accessible " 1 bedroom with a public porch. Ok... so I hate the terrace, but

I do move about much more safely and with less trauma to my joints. I think

the night the pizza delivery guy insisted on carrying my groceries up stairs

because he was afraid I would fall really got me. I too am one of those folk

who like to do it myself for as long as possible. I don't think I had

realized how scary looking I was -- trying to pull myself up the stairs. It

was just 15 steps, but sometimes it took 30 minutes for me to do them... just

made sense to let go at some point and take better care of what's left.

Like I said, just my two cents... take what ever is useful and leave the

rest. I've gotten two reasonably good years on MTX... it's sure lots cheaper

than the biologics, and for as long as it works... and is not too hard on my

liver, I'm going to hang on to it. Wishing you easier days, Deborah

[Guest guest]

In a message dated 07/16/2002 3:03:59 PM Eastern Daylight Time,

pugnfriend@... writes:

> My colleagues are supportive, as well, and would help me more if I asked

> them to.

Kathy - one of the things my officemate will do for me on bad days is run

things out to the mail, the copier, etc. for me, change the computer backup

tapes, even heat my lunch in the microwave for me so I don't have to walk

back to the lunchroom. It's really nice to have someone like that to work

with. I hope you have someone in your office like that who can assist with

those things, not because you have to ask, but because they empathize with

your pain and want to help.

Hope you are well -

[Guest guest]

Hi Deborah,

You raise an excellent point about learning to accept our limitations.

Pushing ourselves beyond reasonable limits can cause injury and greater pain.

Something for all of us to think about whenever we try to do something that

our bodies are telling us we shouldn't.

I hope you'll continue to tolerate MTX well and that your quality of life

leaves you many reasons to smile a lot.

Kathy

> <<Just to toss in my two cents on the stairs concept. I took quite a while

> coming to grips with the idea that my mobility was becoming more and more

> limited. I finally got to the place where I could no longer safely climb

> stairs. I finally grasped the idea that I was in more danger from a fall

> than anything I felt I could gain by still doing the stairs>>

Kathy

[Guest guest]

,

You have hit the nail on the head. Most of us have colleagues who are more

than willing to assist us in ways large and small but they're not mind

readers and it is up to us to let them know when we are having a bad day or

could use a little extra assistance. I guess we need to look at asking for

help no differently than we look at taking medication - it is just something

we need to do to deal with this disease.

Thanks, again, for the suggestions but especially for the moral support.

Regards,

Kathy

> Kathy - one of the things my officemate will do for me on bad days is run

> things out to the mail, the copier, etc. for me, change the computer backup

>

> tapes, even heat my lunch in the microwave for me so I don't have to walk

> back to the lunchroom. It's really nice to have someone like that to work

> with. I hope you have someone in your office like that who can assist with

>

> those things, not because you have to ask, but because they empathize with

> your pain and want to help

Kathy

[Guest guest]

Welcome, a! I'm sorry about your tough diagnoses, but I'm glad

you found us, too.

How much methotrexate (MTX) will you be taking? In what form?

We have a lot of people here with MTX experience who will undoubtedly be

happy to share their experiences with you and offer reassurance. With

any luck, the MTX will help you with your pain and fatigue.

Great idea about organizing an exercise group! We have several

Californians (and animal lovers) here, and I hope some are near you.

Looking forward to learning more about you,

[ ] new member introduction

> Hello everyone. I'm glad to have found this group. My name is

> a and I live in Southern California. I'm a 37-year-old mother

> of two with RA and multiple sclerosis. I have just been switched to

> Methotrexate but have not yet taken my first dose (a little nervous I

> guess). I have 5 dogs- 2 golden retrievers, 1 black lab and 2

> pomeranians. Then there's the 2 cats and the fish. I might as well

> have a farm. I have a son in basketball and a daughter in

> cheerleading. I'm finding it very difficult to keep up with

> everything these days. I should say I keep up, but at the expense

> of increasing my pain and fatigue every day. I'm nervous about the

> methotrexate because I really can't add more fatigue to my days with

> all the responsibilities I have. What's a mom to do?

>

> If anyone else on the board lives in the Inland Empire area of So.

> Cal. I am trying to put together an exercise group for seated

> exercises appropriate for people with arthritis. Feel free to e-

> mail me if interested. Nice to meet everyone.

>

> a

[Guest guest]

Hi a....my eldest daughter shares your name (though spelled

differently - Christena)! Welcome to this dear place with the greatest

people on earth.

I'm sorry you have such burdens on you...you sound like a spunky lady in

spite of your illnesses. I know it's hard balancing life

responsibilities with chronic illnesses. The people here are a

wellspring of support & information.

Nice to meet you, too.

Tess in NW Oregon

[Guest guest]

Hi a,

Welcome to the group. I'm sorry about your diagnosis but there are

wonderful and extremely knowledgable members here that will be a

world of information for you!

I'm not in So. CA now as we relocated here to NW Missouri in '93 just

in time for the 500 year floods but did live most of my life in So.

Cal. Long Beach area in the 60's, and the rest in Orange County

(Anaheim, Hungtington Beach and mostly in Buena Park). Graduated

from high school there out of the Compton School District.

Poms! The love of my life. I have quite a few of the darlings...I

breed and show them.

Also, have some critters and a horse here on the lil 60 acre farm.

Anyway, I'm rambling so will shut this down.

Gentle hugs and wishing a pain free weekend for you!

in NW Missouri

[Guest guest]

Hi . Thanks for the welcome! I am going to be taking the metho

in pill form. I'm going to start out at 3 pills a week for 4 weeks

and then up to 4 pills a week for another 4 weeks. Then my doc wants

to see me back. I hear the pill form tends to be harder on the side

effects for the stomach and headache. Any truth to that? I also was

advised to take Folic acid to help alleviate some of the side

effects. I'm most worried about the headaches because I suffer from

migraines already.

Thank you again for the warm welcome.

kristina

[Guest guest]

Hello Tess. Thanks for your kind welcome. I can tell from reading

through the multitude of posts that people here are very supportive

of one another. I belong to many boards for my various conditions

and I think it's so important to find others who share your concerns

and daily tribulations. It's funny that you mentioned I seem to be

a 'spunky lady'. I had to laugh at that because I feel anything BUT

spunky! Quite the contrary. I am trying though, attemptint to

exercise and keep up with life in general. Again, it's very nice to

meet you.

a

[Guest guest]

Hi ! I thought I recognized your member name from one of the pom

boards (or maybe more than one, lol) that I frequent. Poms are

indeed my love also. I am owned by Romeo and Gizmo, wish I had 10

more of them though. I have always wanted to breed and show, but

just way too busy with my children and their activities at the

moment. I have many relatives in Orange County, CA. I grew up in

West Covina. How do you like living in Missouri?

Okay, now I'm going on and on. Nice to see you, although very sorry

to see you suffer from this disease also.

a

[Guest guest]

Hi a,

Boy, it sounds like you have your hands full. I love animals also and have 2

cats, 2 aquariums, and a 6-year-old son. LOL. I am a 35-year-old divorced,

single mother who lives in Southwest PA. I have RA and love everyone in this

group. They have been the single greatest inspiration in my life (other than

my son). I hope that you can find the same comfort and support here that I

have.

Love and Hugs

Stacey in PA

[Guest guest]

Welcome a. I understand your apprehension about taking mtx. The

side effects are scary, but if it works for you your fatigue may show an

improvement.

I just love Golden Retrievers. I had 2 but both are gone now, one at age 14

and one at 15. I miss them a lot. I have a rottweiler that is the best dog

I¹ve ever owned.

I hope you find something that works for you so that you feel well enough to

participate in your family¹s activities.

a

> Hello everyone. I'm glad to have found this group. My name is

> a and I live in Southern California. I'm a 37-year-old mother

> of two with RA and multiple sclerosis. I have just been switched to

> Methotrexate but have not yet taken my first dose (a little nervous I

> guess). I have 5 dogs- 2 golden retrievers, 1 black lab and 2

> pomeranians. Then there's the 2 cats and the fish. I might as well

> have a farm. I have a son in basketball and a daughter in

> cheerleading. I'm finding it very difficult to keep up with

> everything these days. I should say I keep up, but at the expense

> of increasing my pain and fatigue every day. I'm nervous about the

> methotrexate because I really can't add more fatigue to my days with

> all the responsibilities I have. What's a mom to do?

>

> If anyone else on the board lives in the Inland Empire area of So.

> Cal. I am trying to put together an exercise group for seated

> exercises appropriate for people with arthritis. Feel free to e-

> mail me if interested. Nice to meet everyone.

>

> a

>

>

>

>

[Guest guest]

<PRE>hi kristina, nice to meet you. sorry you are having so much trouble. your

family sounds wonderful. i am 41. a widow. my son will be 19 next month. we

have a terrier mix named lucky, she looks like a little german shepherd, and

a grey-striped kitten 3 mos old named missy. i have a spondyloarthropy and

fibromyalgia. i've had carpal tunnel surgeries and tarsal tunnel surgeries on

both hands and feet. i have been home from work almost 2 years now. i have

social security disability, and i'm about to lose my appeal for short term

disability from my company. good luck with the mtx. i was always too afraid

to try that one. i have such bad luck with medications. kathy in il

[Guest guest]

Hi a, and welcome. This is such an awesome group of friends, and I

hope you'll grow to love them as much as I do. When I was first diagnosed

in early Feb of this year, I was scared and had limited knowledge of RA and

nobody to ask for advice. Now I have friends who can relate to everything I

experience, and are right there to offer emotional support. And as for

information on RA, and a are extremely knowledgable and share all

the latest research with the group.

I think it's wonderful that you're starting an exercise group in your area.

Even on my worst days I try to make sure I get some exercise. It sounds

like you keep very busy with your family (and pet family). I can't imagine

dealing what it must be like dealing with MS as well as RA. I've been told

I might have AS with my RA, and there are others who've been diagnosed with

multiple autoimmune disorders.

Love and hugs,

Carol (in Florida)

[ ] new member introduction

Hello everyone. I'm glad to have found this group. My name is

a and I live in Southern California. I'm a 37-year-old mother

of two with RA and multiple sclerosis. I have just been switched to

Methotrexate but have not yet taken my first dose (a little nervous I

guess). I have 5 dogs- 2 golden retrievers, 1 black lab and 2

pomeranians. Then there's the 2 cats and the fish. I might as well

have a farm. I have a son in basketball and a daughter in

cheerleading. I'm finding it very difficult to keep up with

everything these days. I should say I keep up, but at the expense

of increasing my pain and fatigue every day. I'm nervous about the

methotrexate because I really can't add more fatigue to my days with

all the responsibilities I have. What's a mom to do?

If anyone else on the board lives in the Inland Empire area of So.

Cal. I am trying to put together an exercise group for seated

exercises appropriate for people with arthritis. Feel free to e-

mail me if interested. Nice to meet everyone.

a

[Guest guest]

Hello a...Welcome to our group!--- Carol

<carol@...> wrote:

My name is Iris and I have been battling arthritis and

FM since I was 15. I have five children and one

grandchild. My life is also very busy. Sometimes you

have to reach down really deep to get the energy you

need to run your household. Try to save some for

yourself by doing something just for yourself. When I

was working, my family knew that the first 15 minutes

that I was back at home were mine. I would go into my

room, change my clothes and then lay down for about 10

minutes. Perhaps you could find somewhere in your day

for yourself.

My children have been in boys choir, girls choir,

volleyball, baseball, football, cheerleading, etc. I

have found that it is helpful to meet other mothers

and find one that you can switch off with. I have

made a lot of wonderful friendships with parents of my

children's friends. A lot of the time, their coaches

can help out with finding you someone or even help

when you are very ill and unable to take your children

to games or practice.

What are the ages of your children. Mine are 23, 21,

21, 15, and 13. Two of them have just left home;

hooray!

We look forward to getting to know you. Hugs, Iris

>

> Hello everyone. I'm glad to have found this

> group. My name is

> a and I live in Southern California. I'm a

> 37-year-old mother

> of two with RA and multiple sclerosis. I have

> just been switched to

> Methotrexate but have not yet taken my first dose

> (a little nervous I

> guess). I have 5 dogs- 2 golden retrievers, 1

> black lab and 2

> pomeranians. Then there's the 2 cats and the

> fish. I might as well

> have a farm. I have a son in basketball and a

> daughter in

> cheerleading. I'm finding it very difficult to

> keep up with

> everything these days. I should say I keep up,

> but at the expense

> of increasing my pain and fatigue every day. I'm

> nervous about the

> methotrexate because I really can't add more

> fatigue to my days with

> all the responsibilities I have. What's a mom to

> do?

>

> If anyone else on the board lives in the Inland

> Empire area of So.

> Cal. I am trying to put together an exercise group

> for seated

> exercises appropriate for people with arthritis.

> Feel free to e-

> mail me if interested. Nice to meet everyone.

>

> a

>

>

>

>

[Guest guest]

In a message dated 2/6/03 12:16:40 PM Central Standard Time,

tljohnson@... writes:

> I've been lurking on the list for about a week now

> and have had the odd question or comment, but didn't

> want to start sticking my two cents in until I'd

> introduced myself.

>

Hi I'm glad you decided introduce yourself. Your two cents will spend

just the same as anyone else's.

About the MTX it does cause uncomfortable side effects for many people but

one thing I would note about this disease is that a med that works for one

person may not do so well for the next. My evolving mindset is that if it

works dont change it. I dont know what the minimum dosage of MTX is but I

would suggest using the smallest dosage that will control your symptoms

sufficiently. The injected form seems to cause fewer and less severe side

effects and when taking MTX for psor you should also take Folic acid to

lessen side effects, especially mouth sores.

On exercise/physical therapy; With PA it is important to keep your joints

moving and to use stretching excersize to prevent loss of range of motion.

What form of MTX and dosage are you using now? Orin