Re: Encouragement needed

[Guest guest]

hi judi?

my name is rosemary i'm 39 yrs old. i have had psoriasis for many years. i

was diaagnosed with pa about 10 months ago. it started with what i thought

was carpal tunnel syndrome. pain in my wrist hand and fingers. then my feet

started to feel very achy then my legs. i wehnt to a rheumatoligist and i

started on vioxx. which helped a little. but after a few more months it

got increasingly worse. methotrexate was then added to my meds (with folic

acid for the mouth sores) these new meds did nothing for me. by sept i

could barely walk getting up was agony. i could't even pull a shhet over

myself at nite. and never sleep through the nite. 2 of my fingers were

swollen and i couldn't straighten one at all. it was scary i thought i'd be

crippled like that forever. also most toes were like sausages. in nov my dr.

started me on enbrel injesctions 2xs a week. after the first injection i was

at least 50% better!! after a few more i was almost back to normal. i guess

i will have to keep taking this med. even though the self injections freak

me out a little its worth it.

i know enbrel is in short supply now. i don't think its available for new

patients. but i hear they are working on increasing the supply so hopefully

soon.

good luck this may not be as bad as you think.

rosemary

[Guest guest]

I think everyone will tell you that the more active you are (even if it

hurts some) the better off you will be. If you allow yourself to succumb to

the pain and sit and " rest " your joints will stick like cement and it'll be

even harder to get moving again. There's lots of information here--any many

varying degrees of PA. Some of us are extremely serious and have an

incredibly difficult time with the daily tasks of life and others have found

ways to make it tolerable. The best advice I've heard (other than to keep

moving) is to get aggressive about treatment as soon as possible.

I wish you luck! If nothing else, you've found a place here where people

know exactly what you're going through--it's a great place to vent or to

share. I've really benefitted!

Just my two cents.

Sinead

>From: judi4everyoung@...

>Reply-

>

>Subject: [ ] Encouragement needed

>Date: Fri, 30 Mar 2001 17:45:10 -0000

>

>I was just diagnosed with psoriatic arthritis a month ago, and today,

>my rheumatologist told me it is a crippling arthritis. While he said

>there is no way to stop the crippling effects, there are new

>medications to help. He tried to be very encouraging to me, but I am

>a very active 50-year-old woman who panics at the very thought of

>being crippled in any sense. Can anyone in the group shed some

>insight into the crippling involved with P.A.? Thanks.

>

>

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[Guest guest]

Judi,

PA does have it's moments, keeping an open mind,

using meds as needed will help.

I'm 53 and am also active, i don't run or play

tennis but normall i am a regular walker, work

full time - exercize my dog etc. as she is a

therapy dog and we visit nursing homes / rehabs

etc.

keeping your weight down as best you can will

help, eating fruits, veges and chicken, fish (if

you like it - can you tell im not a fish

person).....talk to your rhemy......hopefully he

is open and honest.....some are just all to

anxious to give shots of sterioids in joints but

that is short term and not long term.

good you can to ask others, absorb all you can

and remember to do what is best for you!

nanc

--- judi4everyoung@... wrote:

> I was just diagnosed with psoriatic arthritis a

> month ago, and today,

> my rheumatologist told me it is a crippling

> arthritis. While he said

> there is no way to stop the crippling effects,

> there are new

> medications to help. He tried to be very

> encouraging to me, but I am

> a very active 50-year-old woman who panics at

> the very thought of

> being crippled in any sense. Can anyone in the

> group shed some

> insight into the crippling involved with P.A.?

> Thanks.

>

>

>

__________________________________________________

[Guest guest]

In my fiance's case, he has had it since he was 13, he is now 34.

A couple of his toes in both feet are a bit bent to the side, but not

too bad. The same goes with a couple of the fingers of his left

hand, but not bad.

The arthritis ate his hip cartilage. He had to undergo replacement

of both hips. He has recovered nicely.

Before he had the hip replacements he used to play tennis, ski,

horseback ride, sail, bicycle, and I can't recall what else. In his

case, he did not allow the pain to stop him from physical activity.

With hip replacements, however, you have to be careful because they

can be easily dislocated.

Of course, as with any other chronic condition, the symptoms,

experiences, and how they deal with the situation vary from person to

person.

[Guest guest]

In a message dated 3/30/01 6:33:41 PM US Eastern Standard Time,

judi4everyoung@... writes:

<< just diagnosed with psoriatic arthritis a month ago, and today,

my rheumatologist told me it is a crippling arthritis >>

My rheumatologist told me the following - there are 3 ways the PA can act:

1. You can have a flare and have it go into remission and the PA stays in

remission forever. 2. You can have recurring flares and remissions. 3.

Your PA can be crippling.

Now, I chose #1, but my body disagreed I think most of us probably have

#2 although some on here have had a lot of joint replacements, etc.

I would say the only way to handle PA is to hope for the best, but prepare

for the worst. It's a tough diagnosis to handle and a somewhat less than

empathetic rheumatologist makes it that much worse. But hang in there, this

is a great support group, you're going to be able to deal with this with the

support of your family and friends and this group.

[Guest guest]

Hi , sorry to hear you've hit a low point. I can't speak for

others, but I know that I hit them periodically, especially after a

visit to a doc, O.T, or someone else who's involved in my ongoing trek

through PA. It seems that when there are better periods or

anticipation of some help forthcoming, I feel a tremendous letdown

afterward because things remain the same or worsen. It's awful hard

to take care of yourself and have to fight for insurance, disability

or any other benefit which you are entitled to. It always seems to

knock me down another peg too. Unfortunately the disappointment,

anger sadness etc.. does nothing for the stress level or the disease!

All I can offer you is encouragement to not let this take you down

further. You are very supportive of others on this list and even

though I don't post too much, I read everything and find comfort from

others so I wanted to let you know that there is support and many

positive thoughts coming your way from this end. Take care, Lorraine

[Guest guest]

In a message dated 6/2/2001 6:26:55 PM Eastern Daylight Time,

lcote@... writes:

<< You are very supportive of others on this list and even

though I don't post too much, I read everything and find comfort from

others so I wanted to let you know that there is support and many

positive thoughts coming your way from this end. Take care, Lorraine

>>

Thanks so much Lorraine - It makes me feel better to know that you guys on

here understand. I know that my " offline " support system can't always relate

to how I'm feeling. I've gotten a lot of sleep the past few days and am

feeling much better equipped to deal!

Take care,

[Guest guest]

In a message dated 6/2/01 12:18:17 AM Pacific Daylight Time, TADEL630@...

writes:

> Do most of you go through

> periods of fear and anxiety over PA and then feel better again?

>

Sadly enough I go through those days quite often. I live within the city

limits of Chicago and want out sooooooooo bad. But housing outside the city

is so expensive I can't do anywhere near to a trade off. (sell mine buy

another same $) Then I think about living further away from my docs and with

a higher mortgage I have no choice but to work and get depressed. What if

I'm on the way to work one day and suddenly my hands do their " oh my God I

can't stand the pain " thing and I can't finish the drive. Then the most

traumatic thought enters my mind- I CAN NEVER LIVE ALONE AGAIN! No more Ms.

Independence. It is traumatic but all I have to do is relax for a minute or

two and think about the things I do have or things I can do right now. Not

tomorrow or next week or next year. I take the time to look at the sky and

the trees(thank heavens it's spring!) and the flowers and thank God that I

can see-smell-hear-feel. It makes it somewhat better. Then I think about

getting out of the city again cause that is not what I want to

see-hear-smell:):):) How depressing. It is a vicious circle for anybody

who has a painful disease but you need to remember no matter how bad it is

you need to thank God because it could always be worse, I'm not a practicing

catholic right now and that hurts. I think my whole outlook on life would be

far better if I was. When I think in those terms I ALWAYS feel better.

Faith can make such a difference. I think I need so much more of it. My

prayers are with you. I didn't want to ramble on but I do want you to

know----no you are not alone.

Chicagoland Sharon

[Guest guest]

Thanks for the reply Sharon. I can totally relate to so many things you

brought up. Having to work, for one. My husband is totally disabled and

although he receives social security, it is no where near enough to support

us, so I must work. I'm lucky that I have a desk job, but it is still hard

to get up and go to work each morning.

And I am thankful each day that things aren't worse and that I have so many

abilities left, and worrying about the future is pointless, but I seem to do

it sometimes anyway. You mentioned about your hands hurting so bad you can't

drive, I worry about when I get to work, how can I get out of the car and

walk to the door. Somehow I guess though we always manage.

I hope you are having a pain free day today.

Take care,

[Guest guest]

Sharon,

I have anxiety and maybe it is about PA, I often think it is that I

would love to quit work or at least cut back but i'm the principal

manager of a small company for 20 years and no one trained to take my

job......my health insurance is a big concern especially w/costs of meds

and remicade infusions, I'm now worth over $9,000 of remicade w/another

infusion coming July 5.

Gripping the steering wheel some days is a struggle....we did get

another car that has the automatic seat belts which is such a blessing

for me.

I keep saying prayers to give me the strength and courage to get thru my

days and thank Him for the many blessings I have starting w/my husband.

Nanc

momscmbc@... wrote:

> In a message dated 6/2/01 12:18:17 AM Pacific Daylight Time,

> TADEL630@...

> writes:

>

>

> > Do most of you go through

> > periods of fear and anxiety over PA and then feel better again?

> >

>

> Sadly enough I go through those days quite often. I live within the

> city

> limits of Chicago and want out sooooooooo bad. But housing outside

> the city

> is so expensive I can't do anywhere near to a trade off. (sell mine

> buy

> another same $) Then I think about living further away from my docs

> and with

> a higher mortgage I have no choice but to work and get depressed.

> What if

> I'm on the way to work one day and suddenly my hands do their " oh my

> God I

> can't stand the pain " thing and I can't finish the drive. Then the

> most

> traumatic thought enters my mind- I CAN NEVER LIVE ALONE AGAIN! No

> more Ms.

> Independence. It is traumatic but all I have to do is relax for a

> minute or

> two and think about the things I do have or things I can do right now.

> Not

> tomorrow or next week or next year. I take the time to look at the sky

> and

> the trees(thank heavens it's spring!) and the flowers and thank God

> that I

> can see-smell-hear-feel. It makes it somewhat better. Then I think

> about

> getting out of the city again cause that is not what I want to

> see-hear-smell:):):) How depressing. It is a vicious circle for

> anybody

> who has a painful disease but you need to remember no matter how bad

> it is

> you need to thank God because it could always be worse, I'm not a

> practicing

> catholic right now and that hurts. I think my whole outlook on life

> would be

> far better if I was. When I think in those terms I ALWAYS feel

> better.

> Faith can make such a difference. I think I need so much more of

> it. My

> prayers are with you. I didn't want to ramble on but I do want you to

>

> know----no you are not alone.

>

> Chicagoland Sharon

>

>

>

[Guest guest]

Since the pain in my back has started I have felt the same way. I TALKED TO

A TRAINED PROFESSIONAL FRIEND THAT KNEW ME BEFORE MY MOBILTY IN MY LEGS WENT.

IT'S HARD SOMETIMES AND VERY OVERWHELMING AT TIMES. I HAVE FOUR CHILDREN

THAT ARE VERY ACTIVE ,LIKE I USED TO BE, AND KEEPING UP GETS HARDER AND

HARDER. WE ALL HAVE GOOD DAYS AND BAD DAYS. I JUST REMEMBER WHY I WORKED

SO HARD ALL THESE YEARS TO SURVIVE , MY CHILDREN , THEY HELP ME TO GO ON.

THEY ARE THE ONLY REASON I FIGHT THE PAIN IN MY BACK EVERYDAY. SOMEDAYS ARE

EASY AND SOMEDAYS ARE VERY HARD BUT REGARDLESS I HAVE FOUR WONDERFUL KIDS

DEPENDING ON ME TO BE STRONG, HANG IN THERE AND LOVE THEM FOR ETERNITY. SORRY

TO RAMBLE. GOOD LUCK . NEVER GIVE UP. FIND A REASON TO FIGHT. BEST WISHES.

PAIN FREE IS THE WAY TO BE. MTNCAT

[Guest guest]

Hi ,

....I hope this is just a temporary phase for me. Do most of you go through

periods of fear and anxiety over PA and then feel better again?...

All the time. Last week I had a horrible flare up of both my P and PA. I

felt I'd reached bottom in terms of both fear and anxiety - and a bit of

depression too. I could hardly walk and the pain in my fingers, wrists,

ankles and toes was like a white-hot needle searing through me. I developed

an allergy to the sulfasalazine I was on and I think that this flare up was

because I'm on nothing. I phoned my rheumy and asked for a prescription for

MTX and I've been booked for an emergency appointment on Tuesday (a full day

trip including ferries). Now, the symptoms have gone down a bit including

the swelling, and I'm afraid he won't believe me. I'm terrified of making

that long trip with no pain meds because they would prevent me from driving,

only to be told by the doctor that I don't need it - then come home and

repeat the cycle. I'm tempted to go on a 10 mile hike tomorrow just to

deliberately make a mess of myself!!

, whose name is about to define stress.

[Guest guest]

Thanks to all of you for your replies. I had a bad night or two of sleep

last week and I'm convinced that is what had me in such poor condition. I

usually have no trouble sleeping. I feel a whole new level of sympathy for

those of you who can't sleep. It really makes such a difference in my

attitude and how I deal with this rotten condition.

- I understand what you mean about wanting your rheumy to see you at

your worst, but please don't go out and do damage to yourself with a 10 mile

hike just to prove you are in bad shape! Our rheumies ought to know that PA

flares and ebbs quite frequently and your description of how bad you felt

should be enough. If not, maybe it's time to look for a new, more

empathetic, rheumy.

Hope everyone is painfree and coping today,

[Guest guest]

,

Sounds to me like you need a new Rheumy. Mine gave me a prescription

for about 60 or so Vicodin pills to have on hand just in case.

On the other hand, if you can hike 10 miles, you *can't* be very bad

off! LOL!

-- Ron

> Hi ,

>

> Last week I had a horrible flare up of both my P and PA. I

> felt I'd reached bottom in terms of both fear and anxiety - and

> a bit of depression too. I could hardly walk and the pain in

> my fingers, wrists, ankles and toes was like a white-hot needle

> searing through me.

> ... only to be told by the doctor that I don't need it - then

> come home and repeat the cycle. I'm tempted to go on a 10 mile

> hike tomorrow just to deliberately make a mess of myself!!

>

> , whose name is about to define stress.

[Guest guest]

,

I was relating to you needing to feel really bad in order to convince

the doctor that you are having a problem. This is much like when the

car doesn't make that funny noise at the shop.

My sister asked me one day " if you have a headache do you think it

wise to wait until it becomes a migraine before taking an aspirin? "

this comment made me realize that taking care of the symptoms even

when they aren't as awful as they could be makes perfect sense.

Let the doctor know how what you think, you know you best.

best of luck,

> Hi ,

>

> ...I hope this is just a temporary phase for me. Do most of you go

through

> periods of fear and anxiety over PA and then feel better again?...

>

> All the time. Last week I had a horrible flare up of both my P and

PA. I

> felt I'd reached bottom in terms of both fear and anxiety - and a

bit of

> depression too. I could hardly walk and the pain in my fingers,

wrists,

> ankles and toes was like a white-hot needle searing through me. I

developed

> an allergy to the sulfasalazine I was on and I think that this flare

up was

> because I'm on nothing. I phoned my rheumy and asked for a

prescription for

> MTX and I've been booked for an emergency appointment on Tuesday (a

full day

> trip including ferries). Now, the symptoms have gone down a bit

including

> the swelling, and I'm afraid he won't believe me. I'm terrified of

making

> that long trip with no pain meds because they would prevent me from

driving,

> only to be told by the doctor that I don't need it - then come home

and

> repeat the cycle. I'm tempted to go on a 10 mile hike tomorrow just

to

> deliberately make a mess of myself!!

>

> , whose name is about to define stress.

[Guest guest]

In a message dated 6/4/01 1:56:44 AM Pacific Daylight Time,

heather.watson@... writes:

> Now, the symptoms have gone down a bit including

> the swelling, and I'm afraid he won't believe me.

,

I know exactly how you feel. I estimate that 9 of 10 times I call to get

into the doc because something swells and prevents me from moving my appt

will be for 3-4 days later and I start to feel better. That is why I enjoy

this group you understand what's happening to me. As much as a doc says he

understands I don't think they realize how messed up our heads can get with

the yo-yo effect of feeling ok now feeling like **** later.

Chicagoland Sharon

[Guest guest]

I wish I could!

Anyway, it's taking care of itself. I don't think I'll have any trouble

convincing him.

[ ] Re: Encouragement needed

,

Sounds to me like you need a new Rheumy. Mine gave me a prescription

for about 60 or so Vicodin pills to have on hand just in case.

On the other hand, if you can hike 10 miles, you *can't* be very bad

off! LOL!

-- Ron

[Guest guest]

Hi ,

I agree w/Lorraine. You are always so helpful and comforting and

supportive to everyone on the list. I have been reading the posts

for over two yrs. and it's really comforting to know that there are

people like you out there that we can talk to. I hope and pray that

you are feeling better soon. You have a lot of compassion--I can

hear that in your replys to our friends here in the group. Take care

Things will get better. Thank God that we all have each other.

Bless you,

Pat

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[Guest guest]

Sharon ~

This is exactly part of what I think I'm dealing with. The yo-yo effect

is what's getting to me the most. Sometimes I actually wish that I

didn't have good days because then I wouldn't expect them! I know in

the scheme of things I'm very blessed with how relatively mild my

symptoms are but the daily up and down of not knowing how you're going

to feel along with the chronic pain really gets to you mentally! You

sure hit that one on the nose!

Judy

(in Ohio)

momscmbc@... wrote:

> As much as a doc says he understands I don't think they realize how

> messed up our heads can get with

> the yo-yo effect of feeling ok now feeling like **** later.

[Guest guest]

Hi and all,

I saw my rheumy yesterday and had no trouble convincing him - without a 10

mile hike! I couldn't have done that even if I really wanted to anyway

He was actually quite understanding and I've been put on a low dose of MTX

to start when my blood test results are faxed to him later today.

My fears about being misunderstood were my own because I couldn't believe it

myself, and not from any personal experience of not being believed by him.

What can I say... life has taught me to believe in 's Law!

Hope everyone is pain free today.

- I understand what you mean about wanting your rheumy to see you

at

your worst, but please don't go out and do damage to yourself with a 10

mile

hike just to prove you are in bad shape!

[Guest guest]

Judi,

Mine is in all of my fingers, three toes on my left foot and two on my right

foot. I also have it in my spine and hips and this week my knees have

decided to get into the act. I just started MTX a week ago and I'm hoping

I'll see some relief soon.

-----Original Message-----

From: Judi wade [mailto:daystar77son@...]

Hi ,

I have PA and have had a lot of swelling also , could

you elaborate on where your pain is ... mine is in my

feet ankles and legs and painful.

Love and God Bless

Hope you are feeling better soon

daystar

[Guest guest]

Hi ok I have it in all my fingers , wrists

that I know for sure the Dr.(Rhuemy is always checking

my shoulders , I believe I have it in other parts of

my body also , but can't get no one to say so , but it

seems like all Dr's just fly in and out , before you

have time to open your mouth , although he does try

too explain things to me , I guess I need t start

writing things down.

Sure hope you MTX starts working for you soon I am on

80 units of it a week . I think that I am in a flare

right now.

Judi

--- <heather.watson@...> wrote:

> Judi,

>

> Mine is in all of my fingers, three toes on my left

> foot and two on my right

> foot. I also have it in my spine and hips and this

> week my knees have

> decided to get into the act. I just started MTX a

> week ago and I'm hoping

> I'll see some relief soon.

>

>

>

> -----Original Message-----

> From: Judi wade [mailto:daystar77son@...]

>

> Hi ,

> I have PA and have had a lot of swelling also ,

> could

> you elaborate on where your pain is ... mine is in

> my

> feet ankles and legs and painful.

> Love and God Bless

> Hope you are feeling better soon

> daystar

>

>

>

=====

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]

The worst pain that I have is also in my right foot, ankle and knee. I also

have pain in my right shoulder and both hips. I had two fingers that were

swollen and painful & after a few months of this I got them injected with

cortisone and they are fine now. I had my ankle, knee, hip and shoulder

injected (at different times over a period of a few years) but it didn't help

much. Right now I have a hard time getting around and will start on Enbrel

soon. Even after all this I still sometimes wonder if I really do have

psoriatic arthritis I keep thinking that one morning I will wake up and all

my aches, pains and stiffness will be gone. PS I also have psoriasis all over

my scalp. so maybe the diagnosis is correct.

[Guest guest]

>Do most of you go through>periods of fear and anxiety over PA and then feel

>better again?>Any suggestions to help get over the bad times?

Hi ,

I hope you're having a much better day! I'm just catching up on the recent

posts now, but I had to respond to this one.

I think it's really normal for us to feel this way. I know it's happened

to me a number of times over the last 8 years I've been dealing with PA.

I particularly worry about losing my independence...I get frustrated when

I can't take care of things by myself or when I need to put things off that

I really want to do because I'm not physically up to it. It somehow seems to

start a [sometimes vicious] cycle (not another one!) leading from one thing

to the next.

To help, I usually try to take a day off..(or realistically just find a

few hours to myself) and plan something that I want to do that is not

physically demanding (in case it's one of those days)..see a movie, go to a

park or the beach, etc..or even better-do something nice for myself.. get my

hair cut, get a pedicure, etc..

After I spend a little time taking care of myself or accomplishing

something, I usually feel better.

It kind of puts things back into perspective for me... it reinforces my

independence and reminds me how lucky I am to have the mobility that I do

(at least somedays)..and it also

gives me a feeling of achievement or accomplishment...(I'm sure most of you

know the feeling of those rough days we feel like we can't do anything).

Reminds me that although I have these limitations, I can still enjoy things

in my life.

I hope this helps you and more importantly that you're having a better

day!

Christie

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[Guest guest]

Hi,

I was thinking about all of the pain I have. You know feeling sick to my

stomach all of the time, feeling so nauseous you'd think I was having morning

sickness. (Not possible.) But, when I get down about my medications, (I take

a ton) I try to remember what it was like not to be able to brush my teeth

or brush my daughter's hair, not to mention my own. I still have pain,

swelling, etc., but not to the degree that I cannot function. I find that

the side effects of my medications make me feel like I have the flu. There

are days I think I can't take one more day feeling like this and then I go

back to remembering the horrible pain. At least now I can tollerate it. I

know that when I was first diagnosed, it was after months of doctor's visits

and I was sure I had bone cancer. What else could it be? Who knew? I

think that we all go through this at times. It makes us normal.

Amy Deel