Thanks to all of you for responding. It helped me to hear your stories. I am
feeling really good today: it is the first day on vioxx. (This is the first pain
free day in many months.) The difference in the physical situation was enormous;
more surprising was my emotional state. I started to think that I "was" my
depression; now that I see how happy I am "normally" when not in tons of pain
(i. e., when I can walk), I am relieved. Of course, I dont want to imagine that
the disease is "gone", but while I am temporarily out of pain, I plan on doing
some of the things I want to do. I am trying to get an appointment with a R/I
but they are hard to come bye, even in a large city. I am sad to hear how much
some of you are suffering. I am particularly sympathetic to those of you who for
whom the medications have lost their efficacy. this is one of my big fears: that
I will "run out of choices". (I think of it in terms of trump cards: I dont want
to use them yet because I dont want to lose that option.) I was also important
for me to learn that it is common for you to not have anyone in your real
vicinity who knows about this disease, because I have struggled with that
absence here in my life too. Well, it is nice now to know that this list is
there at least. wishing you all a low pain, high spirits day.

yours

Drew

> ----------
> From: BRENDA BOWERS
> Reply To: Psoriatic-Arthritis@yahoogroups.com
> Sent: Sunday, August 22, 2004 1:45 PM
> To: Psoriatic-Arthritis@yahoogroups.com
> Subject: Re: [Psoriatic-Arthritis] RE: Welcome to Psoriatic-Arthritis
>
> well guys for whatever it is worth,.,, i am in the first stages of psoriatic
arthritis...i also have psoriasis, scleradurma, fibromyialiga, and a few other
skin disorders....i have come to the conclussion that all of these are from an
accident i had when i was 8 and cut my leg halfway off and from gane green
settling in caused my blood to be contamiated, in other words i have tainted
blood...i am now researching the cleansing of the blood...also which i am low in
red blood cells and iron. as my research continues i will update my progress...i
have also lost 72#'s to date, i am a female age 47...good luck to all and may
God be by your side in time of pain...
>
> Costello <costello@...> wrote:Welcome to the group. I am sure you
will find the support you need here.
> Most of us do not know other people with our disease--except the friends
> here.
>
> I am fortunate that my children were older when I got the first really major
> episode. I am now about three years into it. I am going to a holistic
> healthcare center on Monday. I really hope they can offer me an alternative
> to the harder drugs. I have been on Vioxx for all this time and it is just
> not doing it any more. It has also spread to my hands this summer. As a
> teacher, I wonder how I will be able to continue to grade all those essays!
> I may have to start recording my comments on cassettes as one of my college
> profs with arthritis was forced to do.
>
> Good luck. I hope your wife can handle the load. You might check the
> archives. Someone shared a very good set of advice for educating those you
> love when you suffer from this disease.
>
> Ks Di
> ----- Original Message -----
> From: "Bergerson, Andrew S." <bergersona@...>
> To: <Psoriatic-Arthritis@yahoogroups.com>
> Sent: Thursday, August 19, 2004 11:21 AM
> Subject: [Psoriatic-Arthritis] RE: Welcome to Psoriatic-Arthritis
>
>
> > Hi:
> >
> > I am a new member of the list.
> >
> > I am a 37 year old man. I was diagnosed some 8 years ago with psoriatic
> spondyloarthritis for pain in the connective tissue of my fingers/toes, of
> the knuckles of my hands and feet, and my wrists; I also have seborrhea, a
> skin condition aparently similar to psoriasis. Other doctors have called the
> pain fibromyalgia. Recently, though, it has gotten much worse again, making>
> it difficult to walk or do strong grasping. I have little inflamation as
> such (only one "sausage" toe): it is more a matter of pain while moving the
> joints, putting weight on them, i. e. using them; i also get shooting pain
> at times and a general acheness. I learned that my father is showing similar
> symptoms and that he was independently diagnosed with psoriatic
> spondyloarthritis; he failed to remember that I had faced this condition for
> many years already. He has pain in very similar places, and yet he does have
> psoriasis and not seborrhea. I am now looking for an
> immunologist/rheumatologist to get a "clean" diagnosis (one uninfluenced by
> prior accounts), but I feel far more confident that it is in fact psoriatic
> psondyloarthritis now due to the likely genetic link. (My paternal
> grandmother also has seborrhea.)
> >
> > I am looking for support groups, online and in my area, to help me deal
> with it. (I have had more luck on line than in my area so far.) I find it
> very frustrating that the dermatologists deal only with the skin conditions
> and the rheumatologists only with the arthritis, since they all seem to be
> part of the same disease. (I also read somewhere that my inflammed bowel
> syndrome is also related.) I have tried acupuncture and chiropractic work. I
> practiced chi kung and tai chi and yoga for many years. I am now trying
> swimming, since it is getting to hard to stand for long periods of time. The
> pain is the hardest to deal with. I am reluctant to move to more elaborate
> pain killers, for fear of a slippery slope, but I now find myself hoping to
> see the doctor as soon as possible to get stronger medication.
> >
> > I feel like I am burdening my wife wiith enormous responsibilities because
> it becomes so difficult to move around the house. We now switch tasks: I do
> the sitting things, like foolding laundry and getting the kids dressed,
> while she does the puting away and getting of things. But there is now too
> much for her to do. I get very tired after work (I am an assistant professor
> of history at a public university). I get irritable with my children because
> of the pain and the fatigue. I am frustrated-and very unhappy- that I cannot
> play with them. They are two very energetic kids (1 and 4) who love to climb
> all over me (and I love them doing it); but they sometime hurt me as a
> result and I have to stop. Sometimes the pain gets too much entirely,
> wearing me down emotionally, but I do not want my children or wife to have
> to deal with the burden on it. Yet they need or want my attention.
> >
> > I feel like I am not able to be a good father or a good husband anymore.
> >
> > I spent many years waiting for the pain to go away, practicing tai chi and
> chi kung, getting massages, taking herbs, confident that I could beat it,
> and waking up in the morining surprised that it was still there (or worse).
> Since the seborrhea is located in relatively invisible places on my body,
> the disease was also relatively "invisible", so I am starting to tell more
> people about it-at work, among friends- though I feel extremely awkward
> doing so. But speaking about it with able-bodied people does not always
> help. At this stage, I feel that I would prefer to talk to people who have
> similar conditions and circumstances. I am looking for understanding, but
> also for the kind of advice that only comes from experience. I hope that
> this is an appropriate place for that.
> >
> > yours
> >
> > Drew Bergerson
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
>
>
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