Re: Bummed Out Big Time!!!

[Guest guest]

Charlene,

I found your message regarding your visit to orthopedist on 1/7/02

interesting because I was told same thing regarding " soft tissue

involvement " at my right wrist when I saw orthopedist several weeks ago. He

told me name of condition is synovitis which is inflammation of synovum

(spelling?) -- soft tissue that supports joint and the tendons and muscles

surrounding joint. He further explained that there are many nerve endings in

this type of tissue which, when inflamed, results in the transmission of

signals through central nervous system to brain, making synovitis extremely

painful. I can attest that the cortizone shot administered that day into

top of hand very near wrist was most painful area in which I ever received

an injection of the dozen or more I have received in other areas over the

years.

Additionally, when I received and read latest edition of ARTHRITIS TODAY,

January - February, 2002 (see www.arthritis.org to review) last week there

was a short article on page28 under listing " good news/bad news " entitled

'MRI and Synovitis' (good news) stating that MRI may help doctors in

diagnosing inflammation in the hands of people with RA. Apparently, MRI

(magnetic radiative image--please correct me if R stands for something else

as I am unsure now that I write it) was found to be more sensitive than

clinical examination in diagnosing synovitis (inflammation of the joint

lining) in a study which involved 12 people with active RA.

Article went on to list two joints that MRI is particularly helpful with

diagnosis: the metacarpophalangeal (MCP) joint which is the knuckle closest

to the palm of the hand; and the proximal interphalangeal joint (PIP), which

is the joint in the middle of each finger. I plan to share this article

with the orthopedist on my return visit next week and ask whether MRI would

be helpful in diagnosing and obtaining treatment for toes and joints where

they attach to foot--the only thing that will relieve pain in this area for

me is prednisone/methylprosolone, etc. which I avoid taking unless the pain

becomes absolutely intolerable (usually when weather changes from warm to

cold, especially when drop in temperature is sudden or more than 20

degrees).

Also, glad to hear you are doing so well on the antibiotic treatment and

that you are able to focus more on your 13-year old daughter--I agree that

September 11 has motivated all of us to re-evaluate priorities, but feeling

better sure helps us to follow through on new perspective on life!

[ ] Bummed Out Big Time!!!

> Went to see an orthopedic doc today since the pain in my right hip get

really ugly after I complete a Tae Kwon Do classes or stand on my feet

continuously (like I did yesterday for my grandbaby's first birthday). I

think the doc is excellent. I was surprised because he (and 4th year medical

student he had in the room with him) knew all about PA and it's numerous

symptoms and body system effects. He said the increased pain could be due to

soft tissue involvement that sometimes occurs with PA (new symptom that I

was unaware of, but makes a lot of sense). He said we need to get X-rays.

Unfortunately both his rad techs were out today so... I'm going to have to

go back for a follow up appointment in 2 weeks and then we'll discuss

treatment after that. When I got home and opened my mail box, there was a

letter from the life insurance company that provides the group life through

my employer. I had wanted to increase the amount of insurance I have since I

just bought a house and have a 13 year old to raise. I didn't want to leave

my adult daughter and the 13 year old with a financial burden if I take a

sudden dirt nap before the teenager reaches adulthood. The group life

insurance carrier refused to let me increase my insurance due to the PA!

Thanks a lot!

>

> I've been feeling pretty good since starting the antibiotic protocol. I

have felt guilty about writing anything since I seemed to be doing so good.

Also, was very busy doing the activities for the holidays ( wrapping gifts

and baking). Also have been trying to give my 13 year old daughter a lot

more quality time. We're all we have. I think the events of September have

made re-evaluate my priorities.

>

> BEST WISHES FOR A WONDERFUL AND HEALTHIER NEW YEAR TO ALL YOU WONDERFUL

PEOPLE!!!!

>

> Charlene

>

>

>

[Guest guest]

Charlene,

Re very painful hip, I developed the same about eighteen months ago and it

flares regularly. Xrays revealed no joint problems. It has been diagnosed

as chronic trochanteric bursitis due to PA. Occasionally, I have to have a

cortisone shot to ease it. Deep tissue massage by a physiotherapist has

also helped when it is bad, but boy it really hurts when she digs into it.

The phsiotherapist also tried hot packs which did no good and then switched

to cold packs which.surprisingly, helped relieve it. So I keep a cold pack

in the freezer at home and use it when necessary. I also use Votaren

Emulgel which is a topical nsaid available over the counter in pharmacies

here in Australia. I awoke this morning with some pain in the hip and

treated it as above and it is ok now.

Regards, Gordon

[ ] Bummed Out Big Time!!!

> Went to see an orthopedic doc today since the pain in my right hip get

really ugly after I complete a Tae Kwon Do classes or stand on my feet

continuously (like I did yesterday for my grandbaby's first birthday). I

think the doc is excellent. I was surprised because he (and 4th year medical

student he had in the room with him) knew all about PA and it's numerous

symptoms and body system effects. He said the increased pain could be due to

soft tissue involvement that sometimes occurs with PA (new symptom that I

was unaware of, but makes a lot of sense). He said we need to get X-rays.

Unfortunately both his rad techs were out today so... I'm going to have to

go back for a follow up appointment in 2 weeks and then we'll discuss

treatment after that. When I got home and opened my mail box, there was a

letter from the life insurance company that provides the group life through

my employer. I had wanted to increase the amount of insurance I have since I

just bought a house and ha!

> ve a 13 year old to raise. I didn't want to leave my adult daughter and

the 13 year old with a financial burden if I take a sudden dirt nap before

the teenager reaches adulthood. The group life insurance carrier refused to

let me increase my insurance due to the PA! Thanks a lot!

>

> I've been feeling pretty good since starting the antibiotic protocol. I

have felt guilty about writing anything since I seemed to be doing so good.

Also, was very busy doing the activities for the holidays ( wrapping gifts

and baking). Also have been trying to give my 13 year old daughter a lot

more quality time. We're all we have. I think the events of September have

made re-evaluate my priorities.

>

> BEST WISHES FOR A WONDERFUL AND HEALTHIER NEW YEAR TO ALL YOU WONDERFUL

PEOPLE!!!!

>

> Charlene

>

>

>

[Guest guest]

Regarding message sent earlier today to Charlene--MRI stands for Magnetic

Resonance Imaging.

[Guest guest]

My husband had joint involvement, his cartilaghe was " eaten up " by

the arthritis and he had to undergo hip replacement surgery. Sadly,

his doctors found out about it when it was already too late to try

and mitigate the deterioration. The reason: he was very active and

since he has had PA since he was 13 years old, and hence, dealing

with pain for over 20 years now, he sort of didn't pay much attention

to the " little bit of extra pain " he was noticing ... until it became

unbearable.

I wonder if any of you has had this sort of experience: getting so

used to be in pain and to flare-ups, that you sort of don't pay that

much attention to the " extra " pain anymore.

Btw, I have been a member of this group for almost a year now, I just

don't participate that much, as I am not the one suffering from PA.

I joined to learn about the condition and how others are coping with

it.

Regards.

[Guest guest]

-Yes, definitely I get/got use to the pain, I know it is there... but

more-or-less just 'accept' the pain and try to just 'deal' with

whatever seems to be the more serious problem at the moment. This is

the very reason that I have delayed taking MTX each of the 4 times,

knowing my immune system will drop, I will catch 'something'(as I

just got over bronchitis again), and figuring I can toletate the pain

and avoid other problems that come with all the possible

medications... Anyway, my Orthopedist is the one that finally was

very direct/honest with me... told me 'point blank' that in 10 years

or so I would slowly end up with all sorts or joint replacements by

being so 'brave' with the pain now. That the destruction of the

joints will definitely occur and very often cause irreversible damage.

So, my response is that I am always trying to 'cope' (and sick of

it), but more than that I am not always sure of when to complain and

when 'not' to... sometimes I am told it is just a tendon or just wait

and see, so I don't want to " ...cry wolf... " so often that I outwear

my welcome with my doctors when something is more serious and

painful... I find it very hard to differentiate what is more serious

than others. I do know that pain is good in the sense that it lets

us know something is wrong, so usually I just relax a joint by using

it less, rest more until I am better, splint smaller joints to

stabilize them a while, etc. Very seldom do I take pain killers, I

am more afraid of not feeling the pain and overusing an affected

joint that is 'screaming out' to me to let it rest. Plus, I am afraid

of getting use to pain killers, so I use them sparingly and 'listen

carefully' to what my pain(s) are trying to tell me.

Pain, in my experience, is very exhausting... I realize after many

years that I am simply exhausted because of living with chronic pain,

I adapted to it (whether it is good or bad). Most recently I didn't

even think I had bronchitis, I wasn't coughing (although my sinuses

were a bit congested and my voice was hoarse...)and just thought my

chest was 'aching/painful' because of the arthritis... so that's why

it is good to have a check when in doubt... Does anybody else feel

like this, like they are 'living in pain'? #2

-- In @y..., " minina62 " <mygroups62@h...> wrote:

> My husband had joint involvement, his cartilaghe was " eaten up " by

> the arthritis and he had to undergo hip replacement surgery.

Sadly,

> his doctors found out about it when it was already too late to try

> and mitigate the deterioration. The reason: he was very active and

> since he has had PA since he was 13 years old, and hence, dealing

> with pain for over 20 years now, he sort of didn't pay much

attention

> to the " little bit of extra pain " he was noticing ... until it

became

> unbearable.

>

> I wonder if any of you has had this sort of experience: getting so

> used to be in pain and to flare-ups, that you sort of don't pay

that

> much attention to the " extra " pain anymore.

>

> Btw, I have been a member of this group for almost a year now, I

just

> don't participate that much, as I am not the one suffering from

PA.

> I joined to learn about the condition and how others are coping

with

> it.

>

> Regards.

[Guest guest]

I have had PA for 7 years and am also active: surfing, backpacking, fishing,

kayaking, etc. At first it was really hard but then I just became adjusted to a

certain level of pain. I can't really remember what life was like without some

pain so I may be doing the same thing as your husband. Pain is something that

can't really be measured. During flare-ups I usually hit the predisone and ride

it out with that. I have been taking gluclosamine chodrotin (spelling?) and MSM

for the past 5 years as well as lots of Motrin and/or Aleve, but you are still

constantly living with some level of pain. Is there a test or can x-rays tell

if your cartilage is damaged?

[Guest guest]

Hey #2:

Living in constant pain can be very exhausting over time. " No pain, no gain "

may have its place but in my experience with PA this philosophy usually

backfires. The destruction is the scary part..all they have are band-aids.

Does prednisone stop the destruction? Is it better than methotrexate? Does it

cause P flares? Later Debbie

[Guest guest]

Debbie, I agree with your experience, that this 'pain' philosophy

usually does backfire with us who have PA... I am always careful not

to overexert inflamed joints and do take NSAID's and Pain killers

when needed. But, in general, PA is more-or-less chronically painful

and I have to live with it, more-or-less....without further injury to

my joints, of course. I have never taken steroids, except for the

local injections into joints that are so inflamed that I have no

other choice... except possibly waiting for the joint to explode or

be amputated due to lack of circulation... ) ... anyway, the MTX

has always helped, but have never been on it for more than 4 months

at a time... each time had to stop due to bronchitis and once

pneumonia... because it lowered my immune system. Previous messages

have mentioned that all other meds. either haven't been successful or

I had terrible side-effects.

You asked if prednisone stopped the destruction... it did in the

sense that it reduced the swelling and therefore the added pressure

to the individual joints... but long-term use of local steroid

injections will surely create problems in itself... by making that

joint susceptible to necrosis, opening it up for future infections...

not sure of all the specifics... but my Orthopedist tried to explain

it to me... that's when I most recently went back on the MTX... still

waiting to get over the bronchitis so I can continue it again.

Thanks for your message. #2

[Guest guest]

YES!YES!YES!!!!!

[Guest guest]

Hey #2:

Hope your bronchitis clears out and your MTX can kick back in. I have been

taking Ampicillin to keep my psoriasis in check....are you taking any

antibiotics? Did you ever try to Minocycline? Thanks Debbie

[Guest guest]

Thanks for your reply, . Everything that you expressed sounds

very familiar to me, as I often ask him questions. I learned a lot

when he underwent his hip replacement surgeries. I truly was

wondering if this was something that everyone afflicted by PA goes

through. He does take pain medication, though. I still remember

when he had to undergo the second surgery and was told that he had to

stop taking all pain medications except for Tylenol. It has been one

of the most grueling experiences we've been through as I could see

the pain in his face 24/7. He did not complain a lot, but he even

needed a cane to be able to walk during that week. All of you are

truly admirable, brave people.

Regards,

Mireya

> -Yes, definitely I get/got use to the pain, I know it is there...

but

> more-or-less just 'accept' the pain and try to just 'deal' with

> whatever seems to be the more serious problem at the moment. This

is

> the very reason that I have delayed taking MTX each of the 4 times,

> knowing my immune system will drop, I will catch 'something'(as I

> just got over bronchitis again), and figuring I can toletate the

pain

> and avoid other problems that come with all the possible

> medications... Anyway, my Orthopedist is the one that finally was

> very direct/honest with me... told me 'point blank' that in 10

years

> or so I would slowly end up with all sorts or joint replacements by

> being so 'brave' with the pain now. That the destruction of the

> joints will definitely occur and very often cause irreversible

damage.

>

> So, my response is that I am always trying to 'cope' (and sick of

> it), but more than that I am not always sure of when to complain

and

> when 'not' to... sometimes I am told it is just a tendon or just

wait

> and see, so I don't want to " ...cry wolf... " so often that I

outwear

> my welcome with my doctors when something is more serious and

> painful... I find it very hard to differentiate what is more

serious

> than others. I do know that pain is good in the sense that it lets

> us know something is wrong, so usually I just relax a joint by

using

> it less, rest more until I am better, splint smaller joints to

> stabilize them a while, etc. Very seldom do I take pain killers, I

> am more afraid of not feeling the pain and overusing an affected

> joint that is 'screaming out' to me to let it rest. Plus, I am

afraid

> of getting use to pain killers, so I use them sparingly and 'listen

> carefully' to what my pain(s) are trying to tell me.

>

> Pain, in my experience, is very exhausting... I realize after many

> years that I am simply exhausted because of living with chronic

pain,

> I adapted to it (whether it is good or bad). Most recently I

didn't

> even think I had bronchitis, I wasn't coughing (although my sinuses

> were a bit congested and my voice was hoarse...)and just thought my

> chest was 'aching/painful' because of the arthritis... so that's

why

> it is good to have a check when in doubt... Does anybody else feel

> like this, like they are 'living in pain'? #2

[Guest guest]

In his case, the X-rays showed the damage. Up to then he had been

jogging (he even participated in a marathon shortly before they found

about the carthilage damage), and horsebackriding (the Olympic kind,

with the fence jumping). He was limping though, and he attributed it

to his arthritis and to being in bad shape. At the time he was

living in CA. When he came back to NY he had to find himself a new

rheumatologist. He had not had X-rays done in maybe a year. He was

the doctor who found about it.

How has the glucosamine been working for you? We just started taking

it about a month ago.

Regards,

Mireya

> I have had PA for 7 years and am also active: surfing, backpacking,

fishing, kayaking, etc. At first it was really hard but then I just

became adjusted to a certain level of pain. I can't really remember

what life was like without some pain so I may be doing the same thing

as your husband. Pain is something that can't really be measured.

During flare-ups I usually hit the predisone and ride it out with

that. I have been taking gluclosamine chodrotin (spelling?) and MSM

for the past 5 years as well as lots of Motrin and/or Aleve, but you

are still constantly living with some level of pain. Is there a

test or can x-rays tell if your cartilage is damaged?

[Guest guest]

-Thanks for your message Debbie, I just finished a course of

Augmentin 375 mgs. yesterday... still feel like I have a drippy nose,

but my chest seems clear. My rheumy wants to have a chest xray done

and to check me before getting me back on MTX... my joints are

already getting worse just missing my one week dosage while on the

antibiotics... (

In a previous message 'someone' mentioned that previously affected

and damaged joints were now not as painful... I have also had that

experience. My L ring finger was my 1st joint affected, it was

swollen and very painful (typical sausage appearance... ugh) for at

least 2 or 2 1/2 years... but ever since I have never had a problem

with it... BUT I am very careful with all my joints now, I don't cut

with scissors, cut vegetables, etc. I don't want to affect other

joints with any more stress than necessary... I remember how upset I

was not to be able to wear my wedding ring for so long, now I had it

made 1 1/2 sizes larger... I get funny looks sometimes, looks like I

stole someone else's ring, I wrap a bandaid around the back to keep

it from falling off... I have had too many 'ring cutting' experiences

in the emergency room(s) to even think of wearing a proper fitting

ring ever again !

My feet are another story... I can avoid using my hands more than I

can my feet (as all of you, of course... ), but since I can't avoid

walking and bearing weight on my feet...so, needless to say, the foot

and toes never really get a good enough rest to recover like my

fingers. My newest affected joint is middle and side of my

R 'middle' finger... it is amazing how much I didn't realize I used

that part of my finger... cutting my food with a knife, brushing my

teeth, brushing my hair, writing with a pen or pencil, and especially

hurts when I am holding a mug of tea...

Sorry, this went on and on... but over 10 years of experiencing P and

PA I had forgotten so much of my medical history of events until I

was reminded daily with all your messages and concerns, etc. I use

to be upset about psoriasis, now it doesn't bother me a bit... PA has

taken center stage to everything else. It really consumes every

moment of our lives. It makes me so happy to read touching and

concerned messages from the SPOUSES of us with PA... bravo for your

support and understanding.

I have an interesting question.... does anyone ever feel at a loss

when they have a 'good' day (i.e.- less pain, less worry, less

anxiety, etc.)? I certainly do, I find myself thinking " Wow, I feel

great now... but how long will it last... " I feel as if I shouldn't

deceive myself and think it is overwith, because if I do I will most

certainly be more upset when the pain sets in again and I may have

overdone it when I was feeling good.... paying for it later.

Well, I am tired now, it is 11:30 p.m. and I must wake up at 4 a.m.

to get my daughter off to the airport... returning to University...

and I know I have 'rambled on' enough for now. #2

Oh, Debbie, I have never tried Minocycline... but I will look it up,

thanks again. (sorry for this loooooong message...)

-- In @y..., djfl77@a... wrote:

> Hey #2:

> Hope your bronchitis clears out and your MTX can kick back in. I

have been

> taking Ampicillin to keep my psoriasis in check....are you taking

any

> antibiotics? Did you ever try to Minocycline? Thanks Debbie

>

>

>

>

[Guest guest]

#2 wrote:

I have an interesting question.... does anyone ever feel at a loss

when they have a 'good' day (i.e.- less pain, less worry, less

anxiety, etc.)? I certainly do, I find myself thinking " Wow, I feel

great now... but how long will it last... " I feel as if I shouldn't

deceive myself and think it is overwith, because if I do I will most

certainly be more upset when the pain sets in again and I may have

overdone it when I was feeling good.... paying for it later.

,

I have been feeling better the last couple of weeks (thank you Enbrel). Still

in pain, I am sure I will always be, but tolerable. I got a yoga tape for

Christmas. I made the mistake of trying it out. I couldn't get halfway through

the tape. That night I started flaring. The next day I woke up feeling

horrible. Such a disappointment. I felt like saying, " silly you for thinking

that your body might get back to normal. " I don't think I will ever be able to

be as active as I once was. Lately I have been so fatigued it is painful. I

fall asleep at work. I fall asleep when I am driving. I sleep at least 8 hours

every night and that still isn't enough. I get so tired it is physically

painful to keep my head up and my eyes open. I know this isn't normal.

As you have said before about forcing yourself to go out and then overdoing it.

Well, I can never get the strength to force myself. I really worry that my

marriage will suffer because of my horrible disease. I have only been married

for almost 2 years now. I know my husband loves me and he puts up with me. I

am thankful for that. I am scared that one day he is going to get sick of me

being sick and leave. He tells me that I have a bad temper and sometimes I

treat him badly. He thinks that I try to control him. Maybe I do. Maybe I

feel like I can't control my life so I unconsciously try to control his? None

of it is intentional, then again it never is. I love him desperately and don't

want to lose him. I sometimes feel as though I have lost myself. He tells me

that I have changed - which is true. I am not the happy carefree person I used

to be. I am emotional, stressed, hurting, never wanting to do anything,

frustrated, angry and sometimes taking it out on him. I don't mean to. I think

part of it is the steroids, part of it is always feeling bad and partly being

unhappy with where I am in my life. I used to thrive off excitement. I feel so

bored with my life but I can't bring myself to do anything about it. I am

actually jealous that he goes out when he wants and can do whatever he wants.

He tells me that it is unfair - that just because I don't want to go out

doesn't mean that he has to stay at home with me all the time. I agree, but it

is still frustrating. He tells me it isn 't his fault I don't want to go out

but how can I make him understand that it isn't that I don't want to go out - I

feel like I physically can't. He says it isn't his fault that I am sick - well

it isn't my fault either. He tells me that I am a changed person - that I am

boring now. I think so too but what can I do? I miss the way my life was

before I was sick. I don't want to sit here and feel sorry for myself, and I

don't expect anyone else to either. I just feel like if I don't do something to

change my life soon I will suffocate. I can't imagine living the rest of my

life like this - this is no way for a person to live. I feel like I am stuck in

the body of an old person. All these medications, they do more harm than good.

And I am so fed up with all these doctors. I am so afraid that if I continue

this way that I will die young. My body has already been through so much, I

can't imagine what it will be like when I am my mother's age. I know a lot of

people have it much worse than me and my heart really goes out to them. Nobody

deserves to live like this.

I am sorry. I really rambled on. I guess you can say I am having a bad day....

take care,

[Guest guest]

-Dear , I can tell you are definitely having a very bad day...

PA is like that... you never know what the next day will bring, how

you will feel and what you can do considering how much pain you have

or how many joints are aching, etc. I am wondering how old you are

and if you have children...? I suppose I am lucky that I was already

finished with all my pregnancies and raising all 4 of my children (at

least the youngest was a few years old before my scalp showed signs

of psoriasis, and eventually my 1st joint, my L ring finger, started

to show signs of the PA)... at least I didn't have to carry around

the weight of pregnancy and then babies and toddlers when my PA got

worse. My husband and I have known each other since we were 19,

dated 4 1/2 years, and just celebrated our 20 anniversary...

anotherwards, we have been through so much together before all my

physical problems began.

I am not sure where I am leading to, but you said you have been

married for 2 years... but, already your husband doesn't seem to be

very supportive. We all have different situations, so I can't judge

how your relationship is with him... I hope it is better than it

sounds to be.

Not being able to exercise without further damaging myself has been a

very important point for me, I know everybody needs exercise to stay

healthy... esp. women with the increase of osteoporosis, etc. I am

so anxious to do 'something', but I always end up getting worse...

even Yoga is exhausting and painful for me. I also get exhausted

very easily... maybe from medications, the PA, too much thinking

about all my problems, lack of exercise, who knows what else... but,

I have decided to 'listen' to my body and rest as much as I need. I

don't feel guilty anymore, I use to feel lazy... but this site has

given me so much support...I know I am not alone and others are the

same... I am not lazy and I am sick and I do need to take care of

myself... because, if I do not then no one else will... that is life.

Anyone who says they are 'okay' or 'dealing well' with PA is not

really, I find this very hard to believe. Having PA is sad and very

frustrating, for our partners it is difficult as well... I wish I

could get my husband to read more from this site... he would

understand more about me and what I am living with. Poor guy, I

think he really thinks I am going to suddenly be okay again and back

to my 'old' self... I now know I never will be, yes, it is sad, but

it is a fact. I don't have all the answers... I would love to wake

up tomorrow and find out all this was a nightmare, but it is real.

It is almost midnight for me (Amman-Jordan), I am 8 hours ahead of

Texas (my real home) time... so I am really getting sleepy. I know

how it feels to not want to go out, but sometimes you just have to

push... maybe make a compromise and go to a place that you will both

enjoy, more relaxing, less noisey, whatever it is you enjoy... but I

do know if I were not to make attempts to go out....my marriage would

not have lasted until now. We have 4 wonderful children, we have

been through more than 24 years together, so this is my motivation to

keep on pushing ... otherwise, PA will 'swallow you up'. My mom had

Multiple Sclerosis, was in a wheelchair as long as I can remember,

and spent her last 10 to 15 years mostly in bed. She was always

quite cheerful (although inside she had her many sad moments) and

therefore 'attracted' so many friends that always stayed by her

side...if she had not had such a happy disposition all our lives

would have turned out differently... my dad took great care of her,

we (myself and my siblings) helped out and loved her as she was, and

we took her out as much as possible... BUT, had she been negative our

lives would have been terrible and I am sure the marriage would not

have lasted ... she died peacefully in her sleep 11 years ago. She

knew she was loved, we knew she loved us to have gone on with smiles

for so many years when we knew she was suffering.

I don't know what else to say to you... my husband has known me for

so long and knows I am sick... he wants me to be better and be back

to my 'old self'... but we also are still trying to accept the

reality that PA is serious, I have tough decisions to make over if

and what medications to take... and the consequences to my overall

health. He knows I am afraid... but I have no anger, not even

towards the PA... Logic tells me it will do no good. So, I take one

day at a time... my major dilemma is trying to take some focus off

myself and pay more attention to my husband. He is also affected by

my illness. Only seldom do I feel sorry for myself, this site and

all it's wonderful members have helped me in so many ways... take

time to go through as many of the old postings... you will learn a

lot from all their messages, by sharing we help each other to help

ourselves. I wish you the best of luck. I also have bad days, we

all do. Take care of yourself, #2

-- In @y..., " Sa " <lesliesa@r...> wrote:

> #2 wrote

I have an interesting question.... does anyone ever feel at a loss

> when they have a 'good' day (i.e.- less pain, less worry, less

> anxiety, etc.)? I certainly do, I find myself thinking " Wow, I

feel

> great now... but how long will it last... " I feel as if I

shouldn't

> deceive myself and think it is overwith, because if I do I will

most

> certainly be more upset when the pain sets in again and I may have

> overdone it when I was feeling good.... paying for it later.

>

> ,

>

> I have been feeling better the last couple of weeks (thank you

Enbrel). Still in pain, I am sure I will always be, but tolerable.

I got a yoga tape for Christmas. I made the mistake of trying it

out. I couldn't get halfway through the tape. That night I started

flaring. The next day I woke up feeling horrible. Such a

disappointment. I felt like saying, " silly you for thinking that

your body might get back to normal. " I don't think I will ever be

able to be as active as I once was. Lately I have been so fatigued

it is painful. I fall asleep at work. I fall asleep when I am

driving. I sleep at least 8 hours every night and that still isn't

enough. I get so tired it is physically painful to keep my head up

and my eyes open. I know this isn't normal.

>

> As you have said before about forcing yourself to go out and then

overdoing it. Well, I can never get the strength to force myself. I

really worry that my marriage will suffer because of my horrible

disease. I have only been married for almost 2 years now. I know my

husband loves me and he puts up with me. I am thankful for that. I

am scared that one day he is going to get sick of me being sick and

leave. He tells me that I have a bad temper and sometimes I treat

him badly. He thinks that I try to control him. Maybe I do. Maybe

I feel like I can't control my life so I unconsciously try to control

his? None of it is intentional, then again it never is. I love him

desperately and don't want to lose him. I sometimes feel as though I

have lost myself. He tells me that I have changed - which is true.

I am not the happy carefree person I used to be. I am emotional,

stressed, hurting, never wanting to do anything, frustrated, angry

and sometimes taking it out on him. I don't mean to. I think part

of it is the steroids, part of it is always feeling bad and partly

being unhappy with where I am in my life. I used to thrive off

excitement. I feel so bored with my life but I can't bring myself to

do anything about it. I am actually jealous that he goes out when he

wants and can do whatever he wants. He tells me that it is unfair -

that just because I don't want to go out doesn't mean that he has to

stay at home with me all the time. I agree, but it is still

frustrating. He tells me it isn 't his fault I don't want to go out

but how can I make him understand that it isn't that I don't want to

go out - I feel like I physically can't. He says it isn't his fault

that I am sick - well it isn't my fault either. He tells me that I

am a changed person - that I am boring now. I think so too but what

can I do? I miss the way my life was before I was sick. I don't

want to sit here and feel sorry for myself, and I don't expect anyone

else to either. I just feel like if I don't do something to change

my life soon I will suffocate. I can't imagine living the rest of my

life like this - this is no way for a person to live. I feel like I

am stuck in the body of an old person. All these medications, they

do more harm than good. And I am so fed up with all these doctors.

I am so afraid that if I continue this way that I will die young. My

body has already been through so much, I can't imagine what it will

be like when I am my mother's age. I know a lot of people have it

much worse than me and my heart really goes out to them. Nobody

deserves to live like this.

>

> I am sorry. I really rambled on. I guess you can say I am having

a bad day....

>

> take care,

>

>

>

>

>

[Guest guest]

Hi and and and everyone,

, I’m sorry you are having a bad day. I like you feel too young to

have PA. I know that sounds ridiculous. I feel too old to be 30. Last

year I almost fell apart, both physically and emotionally. I was lucky that

I was able to pull myself out of the deep depression I was in. My PA and

fibro were both flaring and had been for some time. My liver was starting

to disagree with all the meds… I was 29 and I was at a point where I had to

sink or swim, or more poignantly, do or die… literally.

If my attempts at exercise and revising my diet had failed… well I can’t

even imagine that…

, I share your fears. I feel like I’ve already been through sooo much

that I can’t imagine old age.

Over the last few years I isolated myself. I physically couldn’t go out and

enjoy myself. Now, I can… yet still I don’t.

I have no interest. I can’t imagine dating again. I can’t imagine getting

married. I lie to myself and my family telling everyone I’m not interested.

I know I need to be sociable again. I used to be very sociable…. I was

good at it and I enjoyed it.

I can’t imagine meeting a woman now…. First getting by my stutter and

psoriasis… then trying to explain my lack of a life over the last couple

years. How can I be a good husband??? I would want a wife… not a nurse.

I’m relatively healthy now… I exercise religiously; I work 5-6 days a week…

I have the energy levels to do what I want, and the level of pain I’m in is

manageable for me. But what about tomorrow??? What about 30 years from

now??? I’ve already been so close to death, my body has taken so much

abuse….

I’ve trained myself to not think about tomorrow, but how can I not???? I

was once very ambitious.

I’ve taught myself to enjoy solitude, but I know things could be better. I

know I need to be more sociable, but I can’t get myself to do anything about

it.

I was diagnosed with PA as a child. I was too young to know what it all

meant and ignorance was bliss. Now that I’ve experienced what PA can do to

me, I’ve changed. I miss the carefree me. I miss the pre-depressed me.

I wanted to empathize, not complain… I hope everyone is doing as well as

can be expected. Better even!!

Good night all and good luck.

[Guest guest]

:

You sound exactly like I used to sound when I was on prednisone. Are you

taking prednisone? I mean, I sometimes still get those feelings, but the

depression over the changes in my life becomes magnified when on the

steroids. Also, I have found that a mild dose of Paxil helps your frame of

mind.

Remind your husband how much you love him...and life...and do something to

improve your attitude (as difficult as that is) if you can't improve the

physical symptoms. There are changes in meds or you could see a

psychologist. I do both sometimes.

Remember, we are all with you, but only you can change your mental status. I

sincerely know how you're feeling. I've been there many times, especially

when I get desperate for some pain relief and go back on prednisone (it

really makes me CRAZY!).

Have better thoughts today.

-----

[Guest guest]

,

I know my age has a big aspect in all my whining. I am only 24. I have no kids

yet. We weren't planning on having children until we are older. The thing that

scares me is that I won't be able to have children. I was only briefly on MTX

(thank God), but I am on so many other meds now. I can't imagine stopping

everything to get pregnant. I mean if I feel this bad now, I would probably be

stuck in bed my entire pregnancy without meds. I know there is no use in

worrying about this stuff now but it is still stuck in the back of my head. I

also worry that I won't be able to get pregnant - that all these medications

will somehow render me sterile. The worst is all this talk about heriditary and

genetic - I mean what if I do have kids and I give them this horrible disease?

I wouldn't want to bring this on anyone, especially a child.

My husband tries to be supportive. He is only 22 so age plays a big part. I

mean how many people our age worry about health problems? I don't think he

fully understands. Sometimes I don't think I fully understand. He has always

been very social. So was I. Now I live like a hermit. I never leave the

house. Work (even though I have a desk job) and taking care of the house (I

mean our tiny apartment) takes enough out of me. I just don't have the

energy...I have been wanting to go back to school but I am not sure I can. I

work full time and I have a hard enough time keeping up with that. I don't

think I could make it to classes too. It seems like whenever I try to do too

much I get sick.

My immune system is so messed up.

I have never been big on exercise. I have been lucky that I am small and have

never really needed too. I know it is important. I was told by an orthopedic

doctor years ago (after a car accident) that I needed to exercise to keep my

muscles in my neck and back strong and that I would probably have to do it for

the rest of my life. Well how can I if it hurts too much? What is worst is

getting the energy to do it.

I think my husband has the same view as yours - that if I keep taking my meds

one day I will get better and this will all go away. Men always want to think

that they can fix things. I don't think he understands that I can't be fixed.

As much as I wish that one day I would wake up and be ok, I am afraid that

things will only get worse. Isn't that how this disease progresses? More and

more joints get affected...so it has been with me. I know I have to accept it

(I still have a hard time doing that). My husband and my mom always say I have

to learn to live with the pain - I don't want to but I guess that they are

right. If that is even possible. I am angry about having PA. I know that it

won't do any good. It's not fair, that's life, things could be much worse - but

it still stinks. I am feeling better today. Thanks for listening. I really

don't know how I would cope if it wasn't for this group. Family, friends - they

try to understand but they really can't. Sorry for this being so long.

Thanks,

P.S. I am from Texas too (Houston area).

[Guest guest]

Hi - I understand your anger at PA. I was in my 30's when diagnosed and

took it hard, so in your 20's is just that much worse. I don't know how long

you've had PA, but usually (as with any grieving process) anger is a natural

reaction on the road to acceptance. I've accepted now that life isn't fair, and

PA isn't fair, but unfortunately, no one ever promised me that life would be

fair. It's difficult to come to grips with the reality (especially at a young

age) that your life will have to be modified. But I've really found that since

I accept that now and make the most of the good days, that I'm happier than I

ever was before PA. I know that sounds weird, but I think for me, it has made

me appreciate so much more in my life and not take things for granted. I hope

that you can come to that point. I'm not saying don't be aggressive in your

fight with PA, I'm just saying that I sort of try to live my life now by the

serenity prayer where I ask for help to change the things I can, peace of mind

to

accept the things I can't change, and the intelligence to know the difference.

Wishing you peace,

[Guest guest]

,

Yes, I am on prednisone. I have been on it for a year and half now (daily -

doses ranging from 5-15mg). I desperately want off it but I can't find a rhuemy

who agrees with me. I feel like I am on an emotional rollercoaster. I am

getting a new dr. (this is the 3rd one). I hope she will get me off the

prednisone. I have tried to stop taking it but I flare horribly. I can't take

NSAIDS because I have an ulcer from the prednisone. I tried celebrex and vioxx

and they did nothing. Enbrel helps but not enough. My GP prescribed me ativan

once but it did nothing. He told me that prednisone can cause psychosis - just

what I need. I'll ask about an anti-depressant. I am already on so many meds.

I hate to add another one but maybe it would help.

Thanks,

>>> mamacin@... 01/16/02 02:28AM >>>

:

You sound exactly like I used to sound when I was on prednisone. Are you

taking prednisone? I mean, I sometimes still get those feelings, but the

depression over the changes in my life becomes magnified when on the

steroids. Also, I have found that a mild dose of Paxil helps your frame of

mind.

Remind your husband how much you love him...and life...and do something to

improve your attitude (as difficult as that is) if you can't improve the

physical symptoms. There are changes in meds or you could see a

psychologist. I do both sometimes.

Remember, we are all with you, but only you can change your mental status. I

sincerely know how you're feeling. I've been there many times, especially

when I get desperate for some pain relief and go back on prednisone (it

really makes me CRAZY!).

Have better thoughts today.

-----

[Guest guest]

Dear , I am from Dallas (but my husband loves Houston, I have

many friends in Houston and the surrounding suburbs and towns... even

Bay City)... it is almost 1 am for me and I am exhausted, but

couldn't resist responding to your response.

I am feeling great today... don't worry too much about things you

can't control, this site is really a great source of knowledge...so

really read through lots and lots of previous postings. In these

past 2 months I really have to give credit to all this site's support

for some improvements in myself... both psychologically and

physically. I feel I am in more control of what I decide concerning

my PA and my 'life', decisions concerning medications, combinations

of medications, and so on.

I feel 'validated' in all my feelings concerning my life with PA,

even the best doctors cannot help us as much as we can help each

other if we really listen. My doctors are great, my dad is a doctor,

and all show sympathy... but they don't know how we feel, they can't

really imagine the extent of pain we are living with or how

frustrated we are every day... they just can't because they don't

have or live with PA... we do. Because I 'look' healthy they think

my 'pain' is minimal... it is major, they think I should be content

with a Tylenol ! Ha, I might as well take a deep breath of air. For

many years I just beared the pain... only giving in every once and a

while by going to the emergency room in tears, because of so much

pain. I felt I had to get use to it... until THIS SITE let me know

that often painkillers are needed, and sometimes more than at other

times. Even now my Rheumy will look at a joint that is so painful

and tell me it's not that bad, it is not hot or warm... or, maybe

comfort me by telling me he has seen worse with other patients... is

that suppose to comfort me ? I can go home miserably in tons of pain

and feel good because someone else 'looks' worse in his eyes...

I am really tired, I could ramble on and on for hours. But, mainly I

just wanted to let you know that there are good times ahead... don't

get too 'down', you are young and have so much ahead of you. We are

all here for you, research is going on... hopefully something great

is on the horizon for all of us with PA.

Good luck, #2-

-- In @y..., " Sa " <lesliesa@r...> wrote:

> ,

>

> I know my age has a big aspect in all my whining. I am only 24. I

have no kids yet. We weren't planning on having children until we

are older. The thing that scares me is that I won't be able to have

children. I was only briefly on MTX (thank God), but I am on so many

other meds now. I can't imagine stopping everything to get

pregnant. I mean if I feel this bad now, I would probably be stuck

in bed my entire pregnancy without meds. I know there is no use in

worrying about this stuff now but it is still stuck in the back of my

head. I also worry that I won't be able to get pregnant - that all

these medications will somehow render me sterile. The worst is all

this talk about heriditary and genetic - I mean what if I do have

kids and I give them this horrible disease? I wouldn't want to bring

this on anyone, especially a child.

>

> My husband tries to be supportive. He is only 22 so age plays a

big part. I mean how many people our age worry about health

problems? I don't think he fully understands. Sometimes I don't

think I fully understand. He has always been very social. So was

I. Now I live like a hermit. I never leave the house. Work (even

though I have a desk job) and taking care of the house (I mean our

tiny apartment) takes enough out of me. I just don't have the

energy...I have been wanting to go back to school but I am not sure I

can. I work full time and I have a hard enough time keeping up with

that. I don't think I could make it to classes too. It seems like

whenever I try to do too much I get sick.

> My immune system is so messed up.

>

> I have never been big on exercise. I have been lucky that I am

small and have never really needed too. I know it is important. I

was told by an orthopedic doctor years ago (after a car accident)

that I needed to exercise to keep my muscles in my neck and back

strong and that I would probably have to do it for the rest of my

life. Well how can I if it hurts too much? What is worst is getting

the energy to do it.

>

> I think my husband has the same view as yours - that if I keep

taking my meds one day I will get better and this will all go away.

Men always want to think that they can fix things. I don't think he

understands that I can't be fixed. As much as I wish that one day I

would wake up and be ok, I am afraid that things will only get

worse. Isn't that how this disease progresses? More and more joints

get affected...so it has been with me. I know I have to accept it (I

still have a hard time doing that). My husband and my mom always say

I have to learn to live with the pain - I don't want to but I guess

that they are right. If that is even possible. I am angry about

having PA. I know that it won't do any good. It's not fair, that's

life, things could be much worse - but it still stinks. I am feeling

better today. Thanks for listening. I really don't know how I would

cope if it wasn't for this group. Family, friends - they try to

understand but they really can't. Sorry for this being so long.

>

> Thanks,

>

>

>

> P.S. I am from Texas too (Houston area).

[Guest guest]

Thanks . I know being angry won't change anything. My life has never been

easy. What doesn't kill us only makes us stronger and as my best friend told

me, I am a survivor. I have gotten through many rough points in my life and I

will get through this too. I guess what makes this so hard to accept is that it

won't go away. That permanency is what gets me. It is just frustrating. It

would be so nice to just have a break. A vacation from my body. I bet that has

been said before. I am seriously going to look into getting some kind of

therapy or something. I went a couple of weeks to see a psychologist when I

first got diagnosed but I will be honest - I get a lot more out of this group

(and for free ;-)).

Thanks again and take care,

>>> TADEL630@... 01/16/02 03:50PM >>>

Hi - I understand your anger at PA. I was in my 30's when diagnosed and

took it hard, so in your 20's is just that much worse. I don't know how long

you've had PA, but usually (as with any grieving process) anger is a natural

reaction on the road to acceptance. I've accepted now that life isn't fair, and

PA isn't fair, but unfortunately, no one ever promised me that life would be

fair. It's difficult to come to grips with the reality (especially at a young

age) that your life will have to be modified. But I've really found that since

I accept that now and make the most of the good days, that I'm happier than I

ever was before PA. I know that sounds weird, but I think for me, it has made

me appreciate so much more in my life and not take things for granted. I hope

that you can come to that point. I'm not saying don't be aggressive in your

fight with PA, I'm just saying that I sort of try to live my life now by the

serenity prayer where I ask for help to change the things I can, peace of mind

to

accept the things I can't change, and the intelligence to know the difference.

Wishing you peace,

[Guest guest]

In a message dated 01/17/2002 3:14:41 PM Eastern Standard Time,

lesliesa@... writes:

> I guess what makes this so hard to accept is that it won't go away. That

> permanency is what gets me.

- I agree. That's the hardest part. But for me, with good medical

care, enbrel, vioxx, and vitamins, sometimes I can have a really good day and

almost feel like the PA is on vacation. Hopefully, you will have a nice long

remission and feel that way too. I think that I will always go in and out of

partial remissions, but I can deal with that (I guess I don't have a choice

anyway, huh?). So I'm hoping for you that you'll soon get some relief and

have a few days where you can feel like your old self and instead of sending

your body on vacation, send the PA packing!