Re: Finally someone who understands

[Guest guest]

- I don't know that I can tell you that your PA gets better, but what

does get better is your skills in coping with it. I've been on MTX for about

2 years now and I was scared to death the first time I took it! I expect to

be vomiting and waking up bald the next morning. My first dose, the pills

were shrink wrapped and double wrapped like toxic waste. I was so upset.

Well, guess what? Nothing bad happened. Oh sure, my hair might be just the

slightest bit thinner (but it was thin to begin with from a thyroid

condition). I switch to injections because I had a little difficulty with my

intestines with the oral - Diarreah or however you spell it - mostly

inconvenient rather than really painful. And I had done allergy shots before

so the injectable was easy for me. Now, has the MTX cured me? No. But I do

feel it has helped the pain and it will help protect my joints. It's a very

personal choice and pregnancy isn't viable for me as my hubby is " snipped "

(I can feel the males out there cringing right now!!) - but whatever you

chose, all of us here can relate to your problems and I'm sure there is no

one on here who hasn't experienced a lot of what you are feeling now. So

keep posting, keep reading, and hang in there.

[Guest guest]

First I doubt seriously that you are whining , as I

thought I was whining too, You are so young to be

feeling that bad all the time, and I can't say if it

will ever get any better for you. It would help if

your husband would be a bit understanding, I have a

dear of a hubby that is very supportive, he doesn't

have PA but has arthritis and understands some of the

pain, I have more of the Arthritis too , then the

Psorasis. I am sure there will be other's in the group

that can be more of an encuragement too you than I...

Come back often .

Judi

--- lesliesa@... wrote:

> It is so good to finally have someone to relate to.

> I was diagnosed a

> couple of months ago with PA (although I have had

> the condition for

> well over a year now). I have been on prednisone

> for the past 8

> months (which has caused me to gain weight and it

> doesn't even help

> anymore) and vioxx. My doctor has mentioned putting

> me on

> Methotrexate - which scares the hell out of me

> because I don't want

> to lose my hair or be sterile. I don't have

> psoriasis at all and it

> is mostly my hands that are affected. My finger

> nails are ugly,

> yellow, and separating from the skin. I am so afraid

> that they will

> fall off. I also have pain in my back and neck but I

> have always had

> pain there because of a car wreck back in 94. I am

> not sure if that

> is related to the arthritis or not. I have only

> recently began

> seeing a rheumatologist because I didn't have

> insurance for the past

> 3 years. The most frustrating thing about all of

> this, other than

> the pain, is that I am only 24. I recently got

> married and I know

> that my husband loves me dearly but I cannot speak

> to him about my

> disease. He doesn't want to think about something

> being wrong with

> me. We are both young and this should be our time

> to have fun. He

> tells me that I never feel good and cannot

> understand why. It is

> frustrating because I am an active person but lately

> I don't feel

> like doing anything at all. My mother supports me

> but says that I

> have to learn to live with the pain - I don't think

> she understands

> how bad it is. In her eyes (and I think in everyone

> elses as well) I

> am too young to be feeling so bad. The mornings are

> the worst.

> Sometimes I have to take painkillers just to

> function. The thought

> of feeling this way for the rest of my life drives

> me crazy. So does

> the thought of being on medication. I am tired of

> taking so many

> pills and especially when don't do any good. I

> don't mean to whine

> or feel sorry for myself but someone please tell me

> that it gets

> better than this. I am sorry if I went off a bit.

> I have never had

> the opportunity to get this off my chest and to

> speak with people who

> are experiencing the same thing.

> Thanks,

>

>

>

>

>

=====

Be ye therefore followers of God, as dear Children:

And walk in love, as Christ also hath loved us, and hath given himself for us as

an offering and a sacrafice to God for a sweetsmelling savour. Ephesians 5: 1,2

__________________________________________________

[Guest guest]

,

It is good to have someone to talk to about your disease. I have had

arthritis (at least diagnosed) when I was 17 years old. I'm now 53 and

yes it has gotten worse but I've had a full life (SO FAR). There are

many more drugs available to try now than I had back in the 70's. The

best thing you can do for yourself is to get some exercize. Walking is

great - helps the body as well as the mind. If you are able to swim or

take aqua-aerobics that can help too. Attitude can be the biggest thing

to go for you or against you.

I've been on mtx for over 15 years. Be sure to get your labs done

regularly. I'm not at all knowledgeable about pregnancy and mtx as I

didn't start on the drug until after I had my children. Don't think it

was available back then.

Best wishes for you

Nanc

lesliesa@... wrote:

> It is so good to finally have someone to relate to. I was diagnosed a

> couple of months ago with PA (although I have had the condition for

> well over a year now). I have been on prednisone for the past 8

> months (which has caused me to gain weight and it doesn't even help

> anymore) and vioxx. My doctor has mentioned putting me on

> Methotrexate - which scares the hell out of me because I don't want

> to lose my hair or be sterile. I don't have psoriasis at all and it

> is mostly my hands that are affected. My finger nails are ugly,

> yellow, and separating from the skin. I am so afraid that they will

> fall off. I also have pain in my back and neck but I have always had

> pain there because of a car wreck back in 94. I am not sure if that

> is related to the arthritis or not. I have only recently began

> seeing a rheumatologist because I didn't have insurance for the past

> 3 years. The most frustrating thing about all of this, other than

> the pain, is that I am only 24. I recently got married and I know

> that my husband loves me dearly but I cannot speak to him about my

> disease. He doesn't want to think about something being wrong with

> me. We are both young and this should be our time to have fun. He

> tells me that I never feel good and cannot understand why. It is

> frustrating because I am an active person but lately I don't feel

> like doing anything at all. My mother supports me but says that I

> have to learn to live with the pain - I don't think she understands

> how bad it is. In her eyes (and I think in everyone elses as well) I

> am too young to be feeling so bad. The mornings are the worst.

> Sometimes I have to take painkillers just to function. The thought

> of feeling this way for the rest of my life drives me crazy. So does

> the thought of being on medication. I am tired of taking so many

> pills and especially when don't do any good. I don't mean to whine

> or feel sorry for myself but someone please tell me that it gets

> better than this. I am sorry if I went off a bit. I have never had

> the opportunity to get this off my chest and to speak with people who

> are experiencing the same thing.

> Thanks,

>

>

>

>

>

>

[Guest guest]

>The most frustrating thing about all of this, other than

>the pain, is that I am only 24. I recently got married and I know

>that my husband loves me dearly but I cannot speak to him about my

>disease. He doesn't want to think about something being wrong with

>me. We are both young and this should be our time to have fun. He

>tells me that I never feel good and cannot understand why.

Welcome to the jungle....... I was 23 when I was diagnosed... Now i'm 26....

You should just be proud in the first place that you have someone to love

and share with... Some of us do not.. And it doesnt get any easier trying

to get a date, While having this pathetic disease... I felt the same way

when I was initially diagnosed... I just didnt want to believe it... I was

young and having fun.... The best time of my life...... And then it just

struck me...... Its very hard being young and having this stupid disease...

You feel like you wanna go out and smoke like 10 joints or something.....

And your husband needs to be more understanding and accepting towards your

condition.... Because its not going to be cured overnight... Make sure he

knows that he married you in " good times and in bad " .

mike.........

[Guest guest]

At the risk of offending some people here, I need to speak out. I think the

words, " you should " should be stricken from the English language. There are

no shoulds or shouldn'ts here, just a lot of suffering and pain that can be

as individual and varied as each one of us and it is ALL valid. We have a

good support group here and we understand how we all feel. We all put up

with the " you should's " from the unknowing, unsuffering and we've had a lot

of discussion lately about how it feels to listen to them. Let's try not

doing that to each other, ok?

...You should just be proud in the first place that you have someone to

love

and share with... Some of us do not...

...And your husband needs to be more understanding and accepting towards

your

condition.... Because its not going to be cured overnight... Make sure he

knows that he married you in " good times and in bad " ...

[Guest guest]

i'm in almost the same position.......my (newly) husband doesn't want to

think about it....he says when i try to talk to him about how i feel being a

young and athletic 33 that i'm putting myself down...when all i'm trying to

do is talk about it....it hurts to walk....with every step i take....my

children say i'm to slow and all i down is sit...but what they don't realize

is......it hurts to sit......no matter what i do.....i played aot of sports,

liftted weights, and went on long hikes through the mountains........that all

seems like ages ago.....well enough complaining...wish everyone a pain free

day......sorry so long....don't get much of a chance to type ....hands hurt

and shake to bad...MTNCAT

[Guest guest]

In a message dated 7/6/01 6:50:36 PM Central Daylight Time,

lesliesa@... writes:

> or feel sorry for myself but someone please tell me that it gets

>

I would love to be able to tell you this gets better. I have had it for 5

years and mine has gotten continually worse. My doc gave me plaquenil about

5 wks ago and my wrist hurts so bad I have been avoiding replying to posts,

But----I felt compelled to answer you. Now don't get mad--I am not trying to

judge---but if you husband is not being supportive towards your pain--that in

itself could cause more stress which will cause more pain. It may be a good

idea to ask him to ready some of the posts. I lost my husband 4 years ago

and he was so supportive that I thought I would not be able to handle the PA

on my own. When I found this group it helped tremendously. My 24 year old

son lives with me and although he says he understands i make him read posts

just so he doesn't think I''m a fanatic or a hypochondriac. Although I have

raised him to be independent he says he will never leave me alone because of

what the PA does to me. He is really scared that I will get hurt and not

have anybody around to help. He doesn't dote on me but his caring really

makes a difference. I have quit telling him to go on his own and not worry

thatI would be okay but inside I am glad somebody cares that much because I

know deep down that I could never live totally alone. I pray that your

husband changes his attitude and learns to accept your disease but even more,

I pray that he never ends up with any type of delbilitating disease and gets

back the understanding that he gave.

Chicagoland Sharon

[Guest guest]

I understand the personal mourning process you go through when you're

diagnosed with a cronic and painful disease (especially when you're

young and this just does not fit in with your plans), you have to

remember that the people who are around you and who love you

(friends, family, spouses, children) go through a similar mourning

process. You're no longer that person the first met and loved.

You've become a jumble of symptoms, doctors visits, blood tests,

medications, limitations, and pain. Pain they can empathisize with

but have no first hand knoweldge of. They don't know what it feels

like to wear our skin, and hopefully they won't EVER know the pain we

feel. You think YOU are lost in this new world, just think of your

loved ones, especially those who are closest to you.

What I'm saying is with anything else, you go through a period of

adjustment. In the end, we all have to make our way though this.

Personally, I try to learn what I can about PA. When I have

knowledge, I'm more at ease. But that's just me. The most effective

tool to use against disease, not just PA, is a simple one.

Communication.

I resolved a long time ago that I have PA, it most certainly does not

have me. And in the end, I win.

in Indiana