Re: Intro; Questions Questions {LONG}

[Guest guest]

--- aka <aka@...> wrote:

[stuff deleted]

> What kind of PA do I have? the NPF (National

> Psoriasis Foundation, which by the way is wonderful

> and educational and I recommend to all and I can

> give contact info) classifies 5 types with varying

> degrees of severity. Can you have more than one .

> type? I seem to have symptoms of more than one.

> Much SI/ lower back involvement - pointing to

> spondylitis and then sausage fingers and asymetric

> joint involvement pointing to asymetric. The reason

> the classification concerns me so much is that they

> seem to have a difference in how disabling the

> disease becomes.

Hi --

This is a long note and I'll leave the rest of it to

the other very good people on the list. But I'll

address the issue excerpted above because I fell into

the same trap --

I also visited the NPF site shortly after diagnosis,

and I was as confused about the " types " of PA as you

are. I brought this up w/ my rheumatologist and she

explained that classifying " types " is an erroneous

and mis-leading way of looking at the disease. Like

you I had both sausage digit and SI pain, so I asked

her if I had ankylosing spondylitis or this or that

or the other . . .

and she said it did not matter, that there are not

really " types " of PA. Each symptom is merely a

manifestation of the larger disease, and patients

may present any number of the manifestations.

A year ago almost all my pain was on the right side.

Since then, and in spite of the methotrexate and

enbrel, it has spread into my left hand, foot, and

SI joint. So do I have symetric or asymetric? My

Dr. would answer that it does not matter: the NPF

site is very informative, but in this case anyway

turns out to be somewhat mis-leading.

One final point -- I've more than a decade running

listservs, and would note that the longer notes are

sometimes less effective than short, pithy ones. I

know you have a lot on your mind -- we all do! -- but

we are all probably better served by recognizing that

this is a medium which lends itself to shorter

missives rather than longer ones.

thanks --

Professor Alan

Instructional Technology, IRT

The Paterson University of New Jersey, Wayne

_____________________________________________________________

[Guest guest]

April, I did read your letter and am really concerned about you. I am a RN

originally from Burlington so am quite aware of the medical facilities

available. First, I do hope you are seeing an RD that you have faith in and

will really 'listen' to you. You are a young wife and mother that needs help

for yourself both mentally and physically. I also have PA and have had it

only 3.5 yrs. I feel just fine because of my mental and physical treatments.

The physical pain, concern, disability and prognosis has a profound effect

on us, and sometimes we don't realize how serious. We were so busy getting

me on the right group of meds that finally worked for me that I didn't

realize that I was becoming irritable, jumpy, selfish concern, afraid I'd

have to quit nursing. I was put on many different meds and finally am

feeling physically great(except for wt.gain) and am taking plaquinil, pred.

8mg, and going down 1mg. per mo., folic acid 1mg., MTX 17.5mg every Wed. and

prilosec. I have celebrex on hand, but have never taken it. My RD picked up

that I was depressed and put me on prozac. It made me feel so much better

mentally. I am an UP person and didn't understand what was going and was

crying for nothing. She asked if I wanted to see a Psychiatrist to talk

things over, and still don't think I need one. What I am saying to you is

that each one of us has to be treated individually, which you know. However,

we have to have a positive attitude no matter what we have. Without that

we're sunk. Our life is not over. You will go through the trial and error

until you get a combination that works for you. I can understand your

frustration, as babies need a lot of our physical and mental strength. Along

with all you have going on, please take time out and you and your little boy

go for a walk for at least 30. min. every day at a certain time. Put him in

a stroller and 'go'. Weather is beautiful there now and lots of places and

directions to go. This Board is made up of great people of all ages with

different symptoms, disabilities, pain meds and suggestions. Some things we

agree with and some we don't, but it is here to help all of us. We are so

fortunate. Much time and effort by our Hosts make it possible. Am sure you

will hear from many of us as we do care about you and want your answers

answered. Make out a list to take to your RD next time and let him read it

and answer you. Don't scare him with too long a list and visits aren't very

long, so be sure you put down in priority order. Just remember he isn't God,

but he should be able to go through most of your list with you. I wish you

well. Right now am preoccupied with my husband who is going through chemo

following surgery for colon cancer. Someone said sometime, when we get

lemons, make lemonade! If there is anything I can do feel free to e-mail me

at bcleary2aol (DOT) Good luck and God bless. Betty in Va.

[Guest guest]

April,

Read your note and I hear you. Just don't give up.

I know how active a 4 year old can be, because I have a 4 year old

grandson who keeps me on my toes constantly.

One thing I do with him that is great for both of us (exercise for me

and using his 4 year old energy) is that we go to the pool and play and

swim. I am so glad it is starting to warm up and the pool is open in

the townhouse complex where my son and family lives. Doing water

aeorbics is such a low impact exercise, but sure helps me, and I get to

be with my grandson.

You also might look into your local YMCA, YWCA Programs. I use to go to

an Arthritis Water Aeorbics Class given there twice a week. They also

have Mommy and Me classes (don't know what age group it goes up to for

the children). But that is also a way of exercise for you and having

your son learn to swim. I don't go there anymore since my son has the

pool available. But it is a great program.

Hang in there and hope you feel better.

Angera

[Guest guest]

<< Does exercise help PA? Should one perservere even with pain? April

I feel the *best* when I am at physical therapy. I go twice a week, as part

of my recovery program from knee surgery. I am also trying to work in some

warm water pool time that is offered at another facility. There are some

days when I really don't feel like going to therapy, but after it's over I'm

always glad I went.

Patty