Re: New Member in near Boston, Massachusetts, USA

[Guest guest]

-Hi Deb,

Welcome! We all understand here! I find it is very hard for people

not experiencing the pain and fatigue to " get it " They may mean well

but they just don't get it. You are not alone that way either. Hope

you will find the support you want here, I am sure you will. I was

born In Boston but haven't been back east for years. Am a

midwesterner now. Say hello to the city for me.

Good Luck,

Marti

[Guest guest]

Welcome to Deb and Sherri!

Penny

> HI DEB

>

> I TOO AM NEW TO THE GROUP AND LIVE IN WEST TEXAS. IT IS A VERY

AGGRavating disease.

[Guest guest]

> Hi,

> My rheunatologist suggested I join the group.

>

>

> To have a support group is excellent. My family does not always

> understand - one sister thinks I need more exercise, another sister

> thinks I take too much medication, and the rest just sympathize or

> humor me. They have no idea of the constant pain, frustration, and

> dispare that I can feel from one moment to the next. So, thank you

> for being out there.

> Deb

Good morning Deb, and a huge WELCOME!

I'm so glad you found this place - and to have a rheumy suggest it -

that's terrific. Many individuals are not as lucky as you (and I)

are in having a supportive and informative rheumatologist.

Reading about the lack of understanding of your family to your pain

struck a sensitive chord with me - I am in a similar situation

(alcholic husband who, at any given time, will either think it's in

my head, feel sorry for himself (a constant) as he's sure I'll be in

a wheelchair in a year (not!) or soon won't be able to drive, or he

thinks I'm a pill pusher...) It is hard, frutrating and lonely - I

think you will find incredible support, compassion, important

information, friendship.... and much more from the (almost) 1,500 of

us that have joined this board and are living with this disease.

Reading and responding to/from the posts almost feels like a

comforter has been wrapped around my shoulders....

I'm very sorry you are going through such a bad time. Hopefully you

will be able to get some helpful tips from the posts here to make

your life easier.

One last thing. I'm going to " plug " the Tuesday nights chat line. I

joined it this Tuesday for the first time - (I'm relatively new to

the board) - there were only a few of us online (which in some ways

was a good thing because the three of us were 'speaking' back and

forth as fast as our sore fingers would allow). It was super to

share... like 3 friends sitting together around a coffee table

chatting back and forth. If you are interested, go into " calendar "

to find out when the next one is scheduled (probably Tuesday evening).

Take care. I'm so glad you have joined us.

(in Vancouver, BC Canada)

BTW, people living in my neck of hte world joke they have webbed

feet - it must be the rainy capital of the world throughout most of

the year - I know exactly what you mean about your suffering... my

body tells me, before the weatherman, when a storm is moving in! K.

[Guest guest]

hi deb,

i live near bostn also . i have hasd psoriatic arthritis for 16 years . i am

53 and trust me you have to keep trying new things . if you can get your

doctor to approve enbrel that is a good med . keep trying !!!. i need both my

hips

replaced . going to have them done at the same time in the fall . my hands

are bad and all i can say is keep going and keep on trying new meds . i really

am not dng too well at present but i still enjoy life . i am on methotrexate

[for 7 years ] and am on enbrel ,elavil and also mobic .

love cathy from mass.

[Guest guest]

In a message dated 7/31/2003 11:47:43 PM Eastern Daylight Time,

mlw402@... writes:

> We all understand here! I find it is very hard for people

> not experiencing the pain and fatigue to " get it "

This is actually getting very frustrating for me. My husband and I went out

to dinner last night with another couple and they were showing us all the

pictures of their trip to Sedona and other areas in Arizona. We are planning a

trip there in October. They were talking about all the hiking they did. They

can see that I am in pain and limping and then they said I would be fine on the

non-hilly trails. I told them right now I can't even walk around the block

in the evening. They said " Oh, you will be fine by then " . They said this as

they looked at my feet and ankles swelling up after dinner. Also at a party

tonight on my block everyone is teasing my husband how I am not working right

now and it must be great. I felt like telling them to take my pain for a few

night and laugh then. Sorry for ranting but some people are soooo ignorant.

Janet

[Editor's Note: Arrrggghhh! Doesn't that kind of willful ignorance masquerading

as superior judgement just frost everyone's cookies? D.]

[Guest guest]

In a message dated 8/3/2003 7:30:41 PM Eastern Daylight Time,

skship7464@... writes:

> MY HUSBAND AND I ALSO GO TO SEDONA WE HAVE NOT BEEN FOR 2 YEARS BUT ARE

> PLANNING ON GOING IN SEPTEMBER.

Hi Sherri,

Too bad we will not be there the same time. We are flying to Dallas from NY

and renting a car. Then driving to Albuquerque (used to live there), Sedona,

Grand Canyon, Las vegas, Lake Tahoe, San Fransisco and down the coast to San

Diego. We are taking 25 days to do it. If there is anyone in this group on my

way let me know. I have friend in Laguna Niqel, Ca that we will meet up

with. We are leaving 9/29 and will be in Sedona on 10/6. I am turning the big 5

0

on 9/30 and feel like the big 8 0 now. Right now I am taking Enbrel but it is

helping at a minimal amount. I was supposed to start mtx this week but I have

a nasty upper respiratory infection and will wait until this clears up. Has

anyone stopped the Enbrel for that? It is hard to take a deep breath.

Janet

[Guest guest]

--Hi Janet,

YUP it can really be irritating. Sorry you have a lot of it right

now. Like we want to stay home from work and HURT-sure. At least we

can laugh at 's comment-I haven't heard that one before-about it

really frosts my cookies HAHA

Marti

[Guest guest]

Argh! That attitude makes me SO mad.

Penny

> In a message dated 7/31/2003 11:47:43 PM Eastern Daylight Time,

> mlw402@a... writes:

>

> > We all understand here! I find it is very hard for people

> > not experiencing the pain and fatigue to " get it "

>

> This is actually getting very frustrating for me. My husband and

I went out

> to dinner last night with another couple and they were showing us

all the

> pictures of their trip to Sedona and other areas in Arizona. We

are planning a

> trip there in October. They were talking about all the hiking

they did. They

> can see that I am in pain and limping and then they said I would

be fine on the

> non-hilly trails. I told them right now I can't even walk around

the block

> in the evening. They said " Oh, you will be fine by then " . They

said this as

> they looked at my feet and ankles swelling up after dinner. Also

at a party

> tonight on my block everyone is teasing my husband how I am not

working right

> now and it must be great. I felt like telling them to take my

pain for a few

> night and laugh then. Sorry for ranting but some people are soooo

ignorant.

> Janet

>

> [Editor's Note: Arrrggghhh! Doesn't that kind of willful ignorance

masquerading as superior judgement just frost everyone's cookies?

D.]

>

>

>

[Guest guest]

My rheunatologist suggested I join the group.

Did I mention I live in Boston, Massachusetts, USA.

To have a support group is excellent.

Deb

Hi Deb,

I too am in the Boston area. I live in Malden & commute to Burlington

for work. I have had PA for about 2 years. I have been on MTX for

about 15 months with very good results. I believe support groups are

helpful. At one point I put out a query to the list about a possible

support group meeting in the boston area. I would guess a group of 4-

8 people would be best, would you be interested? I haven't given a

lot of thought to the logistics, but we could meet at someone's home

or even a local restaurant. If you know of other people with PA in

the area contact them as well. I have a Rheumy appt in Sept and plan

to suggest it or perhaps ask my rheumy to post it at the office.

Let me know your thoughts, feel free to contact me off the list/share

as well.

[Guest guest]

> In a message dated 7/31/2003 11:47:43 PM Eastern Daylight Time,

> mlw402@a... writes:

>

Also at a party

> tonight on my block everyone is teasing my husband how I am not

working right

> now and it must be great. I felt like telling them to take my pain

for a few

> night and laugh then. Sorry for ranting but some people are soooo

ignorant.

> Janet

>

> [Editor's Note: Arrrggghhh! Doesn't that kind of willful ignorance

masquerading as superior judgement just frost everyone's cookies?

D.]

>

> It more than frosts my cookies, ! Janet, I know exactly what

you mean - not working either and husband is - some people think I am

having such a lovely summer vacation! NOT - the narsty side of my

nature does wish I could exchange bodies with them just for one

night - who'd be grinning then! One of the things I hate the most is

the patronizing way they say " oh, it'll get better " - not through any

help from them, it won't (that's up to me). Get an awful urge/need

to explain - but I stop myself because they still won't GET IT and my

frustration level will just rise! (Sorry for the grumble but

people's attitudes just burn me up).

It's a gorgeous morning here in the country, beside a lake and I just

saw a hummingbird 10 feet away getting nectar from one of my hanging

baskets, so I'll smile now :-)

BTW, walking also very hard for me - (and I have fairly severe ps on

the undersides of my feet) - however, a friend just gave me a bike

which I am going to try as my knees aren't too bad - have you tried

that Janet? I'm really hoping it will help because I need to get

some exercise if I can.

[Guest guest]

In a message dated 8/5/2003 1:45:36 PM Eastern Daylight Time,

missionblondie@... writes:

> BTW, walking also very hard for me - (and I have fairly severe ps on

> the undersides of my feet) - however, a friend just gave me a bike

> which I am going to try as my knees aren't too bad - have you tried

> that Janet? I'm really hoping it will help because I need to get

> some exercise if I can.

Yes , The stationary bike is pretty good for me. The last time I kind

of overdid it and paid for days. Then I stopped exercising. I did feel better

when I was going to the gym. I think I will start it up again more slowly

this time. What lake are you on? That sounds so peaceful where you are. Can I

join you???

Janet

[Guest guest]

Janet, your post brought a soft smile to my lips.... i would love to

have you join me on my deck - a lovely cup of herbal tea in the early

morning perhaps? take care - will try bike tomorrow if not too

tired - today was mtx day... it just whips me...

> In a message dated 8/5/2003 1:45:36 PM Eastern Daylight Time,

> missionblondie@y... writes:

>

> > BTW, walking also very hard for me - (and I have fairly severe ps

on

> > the undersides of my feet) - however, a friend just gave me a

bike

> > which I am going to try as my knees aren't too bad - have you

tried

> > that Janet? I'm really hoping it will help because I need to get

> > some exercise if I can.

>

> Yes , The stationary bike is pretty good for me. The last

time I kind

> of overdid it and paid for days. Then I stopped exercising. I did

feel better

> when I was going to the gym. I think I will start it up again more

slowly

> this time. What lake are you on? That sounds so peaceful where

you are. Can I

> join you???

> Janet

>

>

>