Re: Sorry I have to get this off my chest.

[Guest guest]

Hi - you mentioned your friend taking your canceling or not scheduling

going out with them personally. Do they know you have PA and what it is? And

do you ask for help from them when you need it?

I know we all try to fight this disease, but sometimes we need to realize we

have so little control that we need to just accept our limitations and go on

from there.

Hope you are feeling better,

[Guest guest]

In a message dated 8/2/01 12:45:52 PM Central Daylight Time,

lesliesa@... writes:

> My friends don't understand why I don't want to go out

> anymore.

-

I am sorry for you and I can relate to what you are going through. I don't

even want to meet people yet alone start a new friendship. The so called

friends I thought I had cannot possibly understand. I feel no only like a

burden to myself but an even bigger burden to others. Everybody has watched

me with the progression of this disease but for some reason I feel so

alienated. I have taken more tests than I can count. It seems like I know

everybody personally. I went for a second opinion and the new rheumy is

treating me for RA because I tested positive. I have had x-rays- CT scans-

lung scans- pulmonary function tests- nerve testing- muscle testing (they

really hurt) heart scan not done yet---and so much bloodwork it's a wonder

that dracula isn't jealous (ha-ha-ha). I haven't worked since 6-15-01

because my hands hurt so bad and they still hurt but I am determined to get

through this. I really don't know what I would do without all of you out

there. You have become my allies and the only thing that keeps me going. It

is a blessing to know I'm not alone.

Taking it one day at a time.

Chicagoland Sharon

[Guest guest]

Have you considered Enbrel?

[ ] Sorry I have to get this off my chest.

I am having a horrible spell now. My toes are swollen and it hurts

to wear shoes, walk, drive, do anything. My hands ache. My whole

body feels like it has been hit by a train or something. I can't

sleep at night it is so bad. I know it takes a while for the mtx to

kick in but who has patience when they are in constant pain? My doc

increased my prednisone to 15 mg a day and told me that if taking 1

darvocet at a time doesn't help take two. I feel like a junkie for

eating so many pills but what can I do?!?! Something has to give. A

person can't live like this. I keep telling myself that things could

be worse. I am not going to die or anything and I know that there

are people that are much worse off than me but I am too young to feel

this bad. I don't mean to whine but it is just not fair!! God, I

just wish I could have a vacation from my body. Some days it is not

so bad. Sometimes I feel almost functional and then it hits me like

a swift punch in the face. Next thing I know I am lying face down in

the mud and I can't pull myself up. I am not feeling sorry for

myself - I am just so angry. Sorry I needed to vent for a moment. I

know stress can make this condition worse and I am under a bus load

of it (isn't everyone). I try not to worry too much but I can't help

it - something always comes up. It seems like just when I think I am

getting ahead something knocks me back down. I just miss my old

life. My friends don't understand why I don't want to go out

anymore. Sometimes I think they take it personally. I just don't

feel like doing anything. Well thanks for listening.

[Guest guest]

L , I know where you are coming from, I am there

aAlso , and I feel like I whine , but I think hey ,I

aam doing so good , for a day then everything starts

again , hands are hurting , feet are swelling , hands

are swollen , then things calm down , get thrown back

in the mud , and then I think I am crazy , whats a

person to do, I had no idea what PA was , but thought

when the Dr, said PA , ok I can deal with this , I am

not so sure all the time now.

daystar

--- lesliesa@... wrote:

>

=====

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]

I am embarrassed to go in much detail about my disease. It is harder when you

are young because people don't understand as well. They see you and think that

just because you are young you should be healthy. My friends used to know me as

an active person. I mean my close friends and my family all understand because

they are by my side supporting me. They see me struggling day in and day out.

It is really the people who I haven't seen in a while that don't understand

because they know the I used to be and not the one I am now. I had a

friend visiting from overseas. She is staying in a town that is 1½ hours from

where I live. She wanted me to go there last weekend to visit. She even said

that I could spend the night. My husband had to work and I just wasn't up to

making the drive by myself. I was also concerned that I would be stuck sleeping

on a couch. I didn't want to sound rude by telling her that I couldn't sleep on

a couch. I mean I have a hard enough time sleeping in a bed that is not mine

much less a couch. So I called her and canceled. I think she thinks I blew her

off. I don't want to go into details about my disease cause I don't want her to

feel sorry for me. I don't know maybe I should explain what is going on. My

best friend feels that she should come out and see me rather than me driving all

the way out there. Or at least meet me halfway.

[Guest guest]

>>> ronevans@... 08/02/01 11:07PM >>>

Have you considered Enbrel?

I think because I have only been on the MTX for a month my doc. will make me

wait it out. It is my understanding that it takes a while for it to start

working.

[Guest guest]

Several talking about whining getting things off their

chests. I am probably a bit older than most on this

list. I offer this advise.....

If it feels good to whine then do it! My dogs seem to

know when I need extra love without that. But people

sometimes are not as sensitive to our needs.

Especially those closest to us.

We know they are tired of hearing us, but dang it we

are tired of doing it too. A little sympathy now and

then can be pretty comforting and positive!

This list is as good a vehicle as any cause most here

know the problems, so to all who need to whine DO IT!

Life can be a challenge. The good news is the Guy

upstairs is always there and will listen and comfort

give you the umph to get through the day..Just put it

in his hands.

Had a nephew once say to his mother a cancer survivor,

you would have more pep if you didn't sit around all

the time! Dangit, he could have been talking to a new

step mom but for the grace of God, some good surgeons

and chemotherapy. Sometimes the ones we love the most

strike out without thinking. We just have to forgive

them in their ignorance and try to get on with life,

not that it makes it any easier. But I find solace in

knowing that I am here for some reason, and maybe it

is just to be a test of the behavior of those I love!

Dur

__________________________________________________

[Guest guest]

In a message dated 08/03/2001 2:19:07 PM Eastern Daylight Time,

dch1940@... writes:

<< If it feels good to whine then do it! My dogs seem to

know when I need extra love without that. >>

I agree wholeheartedly with your post. Sometimes I just have to whine.

Friday night I just grabbed onto my husband and sobbed my heart out at the

pain. Funny thing - Saturday morning I woke up and the pain in my fingers

and wrists was almost gone. I'm back to " normal " (tolerable discomfort/pain)

now when I was sure I was heading for a flare. Sometimes a good emotional

release of the anger, pain, frustration, etc. really helps.

And isn't it funny how our dogs do know when we are down? My brittany

wouldn't leave my side on Friday night - she even went to bed early with me

and stayed on her pillow all night which she never does - usually she down

exploring the kitchen and watching TV (yes, she actually watches it!) with

the hubby.

So anyway, whine on!!! It feels good sometimes.

[Guest guest]

In a message dated 08/03/2001 2:20:09 PM Eastern Daylight Time,

lesliesa@... writes:

<< I didn't want to sound rude by telling her that I couldn't sleep on a

couch. >>

- I can relate to that totally! I canceled a trip because the friend

offered her camper and I knew I couldn't do that. I really do believe though

that you might have offered more of an explanation. Telling someone you have

PA doesn't mean you are looking for them to feel sorry for you. You could

tell her that you aren't looking for pity, just understanding - Understanding

that cancelling plans with her doesn't mean you don't want to see her, but

that you just are physically unable to do so because of how you feel. My

friend understood that I didn't feel well enough to make the trip, but she

knows I have PA. She doesn't pity me, she understands.

I hope I don't sound judgemental because I totally do not mean it that way -

but I think maybe putting myself in your friend's shoes that if anything, she

might have been hurt by your cancelling because of not being given the real

reason, she probably thinks you just didn't care enough about her to go see

her. Maybe you could write her an email or a letter explaining a little

about the real reason without going into a lot of " feel sorry for me " detail.

Just a suggestion -

[Guest guest]

,

I have tried to email/call my friend and still no word. I know I should have

explained in more detail to her as to why I canceled. It is just hard to admit

that I am ill. It is embarrassing. It is hard to explain to friends that

haven't seen me for a while (my close friends understand because they see me

getting progressively worse) because we are all young. My body seems much

older than it actually is and I have to treat it that way, which is so

difficult, limiting, and frustrating. I am sure it is difficult for my friends

to understand because they used to know me as an active person and I am not that

person anymore. I tried to explain to her that I was on medication and it made

me tired and I wasn't up to the long drive. Another thing was that she was

planning for us to go to a small party and I tried to explain to her that

because of my medication I can't drink alcohol - not that I am a big drinker

anyway but what is fun about watching a bunch of people get drunk? Thanks for

the advice. I will call her again tonite and try to explain to her what is going

on.

>>> TADEL630@... 08/06/01 12:07PM >>>

In a message dated 08/03/2001 2:20:09 PM Eastern Daylight Time,

lesliesa@... writes:

<< I didn't want to sound rude by telling her that I couldn't sleep on a

couch. >>

- I can relate to that totally! I canceled a trip because the friend

offered her camper and I knew I couldn't do that. I really do believe though

that you might have offered more of an explanation.

[Guest guest]

> ,

> I have tried to email/call my friend and still no word. I know I

should have explained in more detail to her as to why I canceled. It

is just hard to admit that I am ill. It is embarrassing. It is hard

to explain to friends that haven't seen me for a while (my close

friends understand because they see me getting progressively worse)

because we are all young. My body seems much older than it actually

is and I have to treat it that way, which is so difficult, limiting,

and frustrating...<

:

First thing that got me about your post was your mention of being

embarrassed. I know this is a hard thing to deal with, especially in

the beginning, but it's nothing to be embarrassed about. You've done

nothing to deserve this, none of us have. (I like to think that we

got this 'cause we are the STRONGER ones.) One thing I know for

certain, God NEVER gives us more than we can handle.

The important thing is to be honest with yourself (this is sort of

the arthritic's 12 step program, first you must admit you have this

disease) and then to your friend. Tell her exactly why you didn't

make the trip. Unless she's totally unfeeling, she'll understand.

And hey, if she's not understanding, then you don't need friends like

that in your life, right? I was 25 when I was diagnosed and I had

family members " peeshaw " at me...sayin I was too young and all that

BS. I responded by pulling out my pill case and showing them what I

took on a daily basis. I never heard another word about it from

them. (Of course, I think my mom yelling at them helped..lol)

>>Another thing was that she was planning for us to go to a small

party and I tried to explain to her that because of my medication I

can't drink alcohol - not that I am a big drinker anyway but what is

fun about watching a bunch of people get drunk...<<

One tip, go to a party and be the only sober person there. I've done

it plenty of times and it's a riot! Perhaps a video camera too?

Might be able to bribe a few people? (KIDDING!!) Seriously though,

don't let PA get it's claws into your life as well. My mantra has been and

always will be " I have PA, PA doesn't have ME! "

Hang in there girl, things will get better...

[Guest guest]

In a message dated 08/06/2001 4:43:59 PM Eastern Daylight Time,

lesliesa@... writes:

<< It is just hard to admit that I am ill. It is embarrassing. >>

Hi - I can relate to all you said in that post. My company gives the

employees " happy hour " as a reward for a job well done. What reward is that

for me to go watch them get toasted while I drink diet coke? So I understand

that part. And I surely understand not feeling well enough for a drive or

not even having the energy to go see a friend. Someone said to me the other

week that it's a pleasure not to have a " high maintenance " friend. That sure

is true. I'm so grateful for my friends who I might not see or call for

weeks and then when we do get a chance to talk, we can be as close as if we

talk every day. Others get a little " snippy " if I don't call or see them

often enough (in their opinion).

But what upsets me in your post is that you say " It is embarrassing " to admit

you are ill. While I do understand this feeling, it's important to realize

that you didn't get PA because of something you did! So many people act like

when you are ill somehow it's your own fault. IT ISN'T!!!! PA isn't your

fault! Nothing you did or didn't do caused it! It is something that wasn't

in your control. That's something that is really hard for people to

understand and accept. Some things just aren't under your control. Please,

please remember - PA isn't your fault - there is no reason to be embarrassed!

- your lifestyle didn't cause it - your heredity might not have even caused

it - It just IS. That's all there is to it. You have it due to none of your

own doing. It's ok to tell people you are ill and ask for their help and

support, and if they don't understand, then they really never were such a

good friend.

Hope you all are having a good day,

[Guest guest]

Thanks for the replies. This group has been so helpful in coping with this

horrible disease. I really don't know what I would have done if I hadn't found

you guys! I have spoken with the friend and I am meeting up with her during the

day. She offered again for me to stay the night but I feel that a day trip will

be more tolerable. I am actually kind of excited. I went last night to my

first visit with a psychologist to speak about my illness. It went very well.

We discussed goals and such (you know the attainable ones). One thing she told

me that really stood out was that I am a survivor. I guess what doesn't kill us

only makes us stronger. Sometimes I wish I had the easier road to life but I

guess you have to take what God gives you and make the best of it. I know I

shouldn't be embarrassed about my disease but I don't like to admit that I am

ill. Call it pride, call it denial (well I think I am actually past that

point). Am I naive for thinking that things may go back to the way they used to

be? I still haven't decided if it is necessary to tell people that I am sick.

I mean, the people closest to me already know and are very supportive. And I

think certain people should know but do you have to tell everyone?