New to Group

[Guest guest]

Hi Sherry, my great-grandfather came accross the " big

water " (Lake Michigan) from Flint about 90 years ago,

to Milwaukee, where I am from. I live in Green Bay,

now. He bought a house on the lake, where my

grandmother lived also, she said the nice thing about

her house was that the neighbors across the street

were 75 miles away. Anyway, welcome from your neighbor

across the Great Lake (my grandfather called it " the

drink " . -dz-

--- Sherry Boulet <boomdiddly@...> wrote:

Hi ,

My name is Sherry and I am also from Michigan.

First of all, exactly where are you? I am Flint. I

know that there are many specialists at the

University of Michigan hospital. My friend and I

went to a conference about 8 months ago there. It

is in Ann Arbor--is that close to you? Write back

and let me know and I will try and help in any way I

can. I won't be able to check my messages until

evening this week as I am working every day, but I

will get back with you. I promise you that.

Sherry

__________________________________________________

[Guest guest]

Hey Sherry! I met a few guys a couple of years ago that worked for a company called Rosie"s Contracting. They were laying fiberoptic cable. I wish I could find out where they are. One's name was Marshal and the other Greene. If you can find anything out about that company please let me know. I would love to contact them as I have moved since our last meeting. I could never have met a better couple of guys. Please check for me. I know Flint is where they would fly in at when they went home. Marshall said he lived 45 minues away. I'd appreciate it. If you can get a Phone @ or e-mail add of the company that would be great. Thanks for listening.

Jan

[Guest guest]

I'm glad you asked that question! I am on the downhill

slide now, 24 weeks + 1 day. Sometime around the 21st

of this month I go for my 6 month re-eval. I have been

getting monthly alt/cbc tests. Now they will check to

see if the virus is still detectable. My dr is

brutally honest, which I am ok with. He says if it

shows undetectable I have a pretty good chance, if

not, my chance is not very good, but not impossible.

Still worth completing the tx. (in his opinion

I have an acoustic and an electric guitar, both

Fenders

I'm left handed and so I think if I play a left handed

Strat, I'll be able to play just like Hendrix....

There has been no evidence to support this theory as

of yet.

My wife went back to work today.

-dz-

--- Sherry Boulet <boomdiddly@...> wrote:

> Hi Dave!

>

> Always nice to hear from you. I have been a bit

> busy lately so haven't been online as much but have

> tried to keep up with all that's going on. I will

> only be in Flint for about 3 more years--we're

> moving to Tennessee when my husband retires. We are

> looking forward to the milder winters! I never

> heard back from --anyone know how he is doing?

> By the way--I love the lyrics to your new song. My

> husband plays guitar--he's got an old .

>

> How much longer on the treatment? How is your wife

> doing?

>

> Love,

> Sherry

__________________________________________________

[Guest guest]

Hi Dave! Always nice to hear from you. I have been a bit busy lately so haven't been online as much but have tried to keep up with all that's going on. I will only be in Flint for about 3 more years--we're moving to Tennessee when my husband retires. We are looking forward to the milder winters! I never heard back from --anyone know how he is doing? By the way--I love the lyrics to your new song. My husband plays guitar--he's got an old . How much longer on the treatment? How is your wife doing? Love, Sherry Re: [ ] new to group Hi Sherry, my great-grandfather came accross the "bigwater" (Lake Michigan) from Flint about 90 years ago,to Milwaukee, where I am from. I live in Green Bay,now. He bought a house on the lake, where mygrandmother lived also, she said the nice thing abouther house was that the neighbors across the streetwere 75 miles away. Anyway, welcome from your neighboracross the Great Lake (my grandfather called it "thedrink". -dz---- Sherry Boulet <boomdiddly@...> wrote:Hi ,My name is Sherry and I am also from Michigan.First of all, exactly where are you? I am Flint. Iknow that there are many specialists at theUniversity of Michigan hospital. My friend and Iwent to a conference about 8 months ago there. Itis in Ann Arbor--is that close to you? Write backand let me know and I will try and help in any way Ican. I won't be able to check my messages untilevening this week as I am working every day, but Iwill get back with you. I promise you that.Sherry__________________________________________________

[Guest guest]

Hi Dave, I will be praying your 6 month re-eval goes well! I know this has been a hard road but your spirits sound good and so does your song I am also left handed--tried to learn the guitar but didn't have much luck. My husband tried to teach me to play right handed but I just couldn't get it. Do you play left handed? Sherry Re: [ ] new to group I'm glad you asked that question! I am on the downhillslide now, 24 weeks + 1 day. Sometime around the 21stof this month I go for my 6 month re-eval. I have beengetting monthly alt/cbc tests. Now they will check tosee if the virus is still detectable. My dr isbrutally honest, which I am ok with. He says if itshows undetectable I have a pretty good chance, ifnot, my chance is not very good, but not impossible.Still worth completing the tx. (in his opinion :)I have an acoustic and an electric guitar, bothFendersI'm left handed and so I think if I play a left handedStrat, I'll be able to play just like Hendrix.... :)There has been no evidence to support this theory asof yet.My wife went back to work today.-dz---- Sherry Boulet <boomdiddly@...> wrote:> Hi Dave!>> Always nice to hear from you. I have been a bit> busy lately so haven't been online as much but have> tried to keep up with all that's going on. I will> only be in Flint for about 3 more years--we're> moving to Tennessee when my husband retires. We are> looking forward to the milder winters! I never> heard back from --anyone know how he is doing?> By the way--I love the lyrics to your new song. My> husband plays guitar--he's got an old .>> How much longer on the treatment? How is your wife> doing?>> Love,> Sherry__________________________________________________

[Guest guest]

Thank you for the prayers, I am leaving for a weeks

vacation today, a camping/fishing trip with my wife

and son. Recharge the battery a little bit.

I play left handed. It was very difficult at first,

because all the chord diagrams are backwards,

especially when you're just learning and it's a

challenge anyway. I find if I write my own chord

diagrams or scale patterns, I write them left handed.

To avoid confusion I usually label the strings on the

diagram (E,A,D,G,B,E). Some books kindly make strings

4,5, and 6 a little fatter on the diagram to leave no

doubt. I can read them either way now.

To further confuse the matter, as the string at the

top when you have the guitar on your lap, is the Low

E, when you strum the strings in a downward motion,

they call that strumming up, since you are going from

the low tones to the high tones. String 1 (high E)is

at the bottom and string 6 (low E) is at the top.

--- Sherry Boulet <boomdiddly@...> wrote:

> Hi Dave,

>

> I will be praying your 6 month re-eval goes well! I

> know this has been a hard road but your spirits

> sound good and so does your song

>

> I am also left handed--tried to learn the guitar but

> didn't have much luck. My husband tried to teach me

> to play right handed but I just couldn't get it. Do

> you play left handed?

>

> Sherry

>

__________________________________________________

[Guest guest]

hi carin, I know I am probably sending this to a lot of people...that's fine

too....anyway....I know where you are coming from. I developed psoriasis at age

7 and pa unofficially at 15 and officially at 23....I say that because I had

severe pains in my legs starting at 15 and was told that I would out grow till

when I was 23 I said , " look I am not going to out grow this thing. " I thought

it had gone into remission last year about the time I ran out of health

insurance so stopped taking my meds. All was fine for a few months and then it

came back with a vengence. Now I am unemployed with no health insurance so I am

just taking naproxen and praying for the pain to go away. It makes it hard to

find work when you can barely walk most days. I am on unemployment but

everywhere I have gone says that I " earn " too much for them to help me and that

my bills that I have are not mandatory. Shh yeah whatever. Anyway I know how

you feel, especially about people not understanding. I either get looks of pity

or people just saying that " you are too young to have arthritis. The fact that

I am 25 but look 18 doesn't really help either. Most days I am at wits end but

my boyfriend and parents have been wonderful as has my friends. Some days this

is all that keeps me going. On other days I just feel plain worthless. If

anyone would like to respond to me I will do my best to answer all emails. I

just can't promise how prompt because some weeks I won't have much access to the

internet. Anywhoo I wish you the best Carin. Oh yeah about the denial part...

in my case I think I deny it a lot myself. I used to be so independent, strong,

do everything myself sort of person and this disease has taken all that away

from me. So it sounds to me like you are doing alright for yourself. Best of

wishes. *hugs*

Thanks,

Ali

[ ] New to Group

Hello, my name is Carin and I have been " lurking " for a few days.

I've had P since I was teenager, although not diagnosed and very very

mild, and started having PA symptons, starting with my jaw, in 1991.

Diagnosed in 1995, after several years of misdiagnosis of Lupus, and

knee surgery to try and figure out swelling, etc. PA remained fairly

benign for first few years, and went away entirely during my

pregnancy with both of my daughter, now 2 1/2 and 8 months. A few

months after each birth, however, had severe flares. I stayed off

meds for 6 months each time to nurse my babies. I'm currently in a

severe flair including knees, neck, fingers (1 sausage digit), toes

(1 sausage digit), and some hip involvement. Thankfully, I am due to

start in an Enbrel study in 2 weeks (my rheumy has drug due to the

study). I am really hoping for good results. I'm currently in

Indocin SR while I wait for the study to begin. I have avoided both

MTX and prednisone so far, again hoping that Enbrel is the answer.

I own my own business, but work part time with the help of 2

assistants. My biggest problem is extreme pain and stiffness after

sitting for more than 15 minutes.

My biggest problem is that my husband is somewhat in denial, and

doesn't think this is a big deal. He is used to me being a very

active person (hiking, soccer, rock climbing, etc.etc.),and seems

to " forget " that I can hardly walk at times now. It's like he

doesn't see me hobbling - very weird. Such as we continue to go to

our dance lessons for Swing, even though sometimes I'm having a hard

time walking. Otherwise, we have a great relationship.

Anyways, just wanted to introduce myself and " vent " a little bit.

Look forward to continued communication with the group.

Carin

[Guest guest]

In a message dated 03/15/2002 3:43:01 AM Eastern Standard Time,

jrnytthpst@... writes:

> unemployed with no health insurance

Ali - check into medicare or medicaid. You should be able to qualify if you

have no income other than unemployment comp. You really need to be able to

take the drugs you need to protect your joints (not just NSAIDS) especially

because you are so young.

Best of luck,

[Guest guest]

You may try your states high risk pool for health insurance. We just did that

in Tx and we got a really good policy for under 300 a month, that was the

only place someone with PA and diabetes would even be considered..

[Guest guest]

I did check into Medicare/Medicaid they said I " earned " too much with

unemployment to qualify, plus I was single with no children. They said they

couldn't do anything for me. (NC by the way). Thanks for trying thought.

Hugs,

Ali

[Guest guest]

Kate,

I am new to the group, actually have no real confirmed diagnosis. My reg md

says I have RA, the Rheumy specialist says PA, Negative????, or Lupus. But

you are really singing my song. I have felt like this for years, with no

label or diagnosis at all. Reading the posts for this group really helps me

feel less isolated, too. I wish I could tell you something that would help,

I just am trying as hard as I can to do as much as I can NOW, because I don't

know what or how tomorrow will be. Pain, fatigue, etc. I am also trying to

prioritize, and that is not easy when you have always had a great amount of

energy and ambition. My husband is going with me to the Dr. appointments, and

my Dr's are helping educate him on what is going on with me. I am currently

taking MTX, Plaquenil, Prednisone, Celebrex and Lortabs for pain. I wish you

good thoughts and prayers, we are in this together.

Carol

[Guest guest]

Hello Kate,

Welcome to the group! I'm glad you found us! There are so many people

who have experienced what you are experiencing now.

Even those of us who have experienced it in the past will usuually go

through it periodically again.

It is very tough to have expectations that you will be a healthy

active young person and then have your body tell you something else.

The arthritis is not a " curable " disease at this time. So most of us

have to learn how to " manage " it. A few get lucky and have nice long

remissions.

I use this group a LOT and I feel better when I help others.

Sometimes, I just vent...

Be careful with the exercise. If you overdo it, you could really

cause yourself some trouble. Make ICE your friend. You have to learn

to set boundaries and really listen to YOUR body. I've had a swollen

ankle for over 2 years now from doing too much walking. I'm sorry

your husband is having a hard time with it right now.

It is tough on a spouse to marry someone and then see them become

ill. It may help to do research and show him the info. Also, if you

find postings here you think might help him understand, show those to him too.

It also might help if he goes to the rheumatologist with you.

Well, I hope you keep posting here and find the support and

information you need to help get you through... There are lots of people here

with great tips and support!

Best wishes,

Meghan

> Hi all,

> I have been lurking for a while now. It has been wonderful to hear

> what others with PA have to say. This condition is so very

> isolating.

>

> I am 31 and was diagnosed 4 years ago. The pain has steadily

gotten

> worse overall and every few months a new joint seems to be added to

> the list. Over the last 4 years my inflamation has affected my

feet,

> hands, knees, hips, buttocks, lower back, chest, neck and

shoulders.

> The only constant inflamation has been in my chest - who knew there

> was a joint in your chest! I am currently taking Voltaren,

> Azulfidine, and Methotrexate. Occasionally I try to skip something

> in an attempt to reduce the meds, but the pain and stiffness is too

> much to bear and makes living impossible. I used to admonish my

> mother for all of the the meds she took at such a young age of 50

for

> high blood pressure, depression, etc..... Now I am her, but 20

years

> younger. Payback.

>

> I started excercising regularly 2 years ago - mainly lifting

weights

> and moderate cardio and it made a huge difference. After going

> through a 3 month period of severe pain on the bottoms of my feet,

I

> started running 2 months ago. I haven't noticed a difference in

the

> pain but mentally feel much better. I do have to be extremely

> carefull not to overdo it. I have let my friends that I run with

> goad me into doing too many miles and then I have to crash for the

> rest of the day - not worth it!

>

> I go through phases of being ok with PA. As long as I carefully

> manage my sleep, get enough naps, excercise, and don't forget to

take

> my meds. Other times I am sick to death of this ridiculous

> condition. Most of my co-workers know I have it (because they have

> commented on my stiffness), but I always feel like they think I am

> being some sort of hypochondriac. And although my husband has been

> very understanding and supportive, he is getting sick of it also.

He

> has even gone so far as to say that I use the PA as an excuse to

take

> long naps and make him do things for me. I, of course, need the

naps

> and the help. It is really starting to strain our relationship and

> this is what gets me depressed the most about my condition. We are

> both very adventurous and dynamic people, we love to travel, camp,

> hike, and do new things. But now all of these desires to have fun

> and live life to the fullest are being held hostage by PA.

> Everything is dependant on how I am feeling that day or even that

> hour.

>

> How do you deal with this? How do you balance your dreams with the

> reality of this condition?

>

> I guess that is enough venting for now. It feels so selfish.

>

> I would love to hear how other people have coped with not being

able

> to do all of the things that they want to. And how to convey to

your

> signifant other that the fatigue is real.

>

> Kate

[Guest guest]

Kate,

I just wanted to say that while I can't actually relate to being this ill at

your age... I do believe there is a certain number of touching points no

matter how old we are when PA flares. My diagnosable flare was all wrapped

up around a messy car crash and an incomplete spinal cord injury... it took

forever to tease out what was what in this mess. Finally it became clear I

was in the middle of a big inflammatory crisis. My rhuematologist was quick

with the PA diagnosis, but she hadn't seen anything with widespread

involvement like mine, both hips, both knees, both shoulders, elbows, wrists,

hands, feet, you get the picture... I just couldn't move without excruciating

pain. She was taught that PA affects fingers and toes. Lucky for me she

did her homework and next visit she got to work trying to prevent any more

damage.

It has taken me almost 2 years of tracking this illness to begin to define a

" FLARE " For me - it begins with fatigue, like I was loaded with 20 lbs

weights on every joint (hey, there's an exercise in empathy for your

significant other). Then the pain... then time starts to blur.. it's all

about finding the right drug mix to get ahead of the flare. I've looked

back at calendars and realized I've lost big chunks of the last 2 years. Not

only were they particularly unproductive times, they just fade from memory, I

don't laugh, I don't smile... I just exist in pain till it's gone.

This last flare ( march into april counting getting over the medication

complications) I mapped really well... I can look back and see I've lost

about 45 days this year so far. Luckily my meds are working again! I feel

human, I laugh, I smile, I think , I remember, and most of all I'm not in

TOTAL pain... sure I still hurt a bit and I still get stiff but nothing like

during a flare... I'm working at identifying these different times... I don't

want to let them blur together.. I feel better when I can declare beginning

and end dates to a flare. Meghan first got me started journaling, now I

highly recommend it as a tool when you are looking for perspective... Hope it

helps, Deborah

[Guest guest]

-hey buddy, i am 35 and was hit with this around your age. i could

not walk at night when getting from bed.the fatige was aweful i hurt

everywhere and i do mean everywhere. i had to go on meds to get

relief. i hated it but i can get thru the day. i do have to take pain

killers and relaxers plus arava and naprosyn, i keep having to change

the celebrex and vioxx, for some reason they dont work after ahwile.

i am now able to work out. i dont over do it.i did have to give up

mowing the yard even though it is not big it puts me down for a few

days. listen to your body. i urge you to at least take something like

vioxx or celebrex, you may be able to get it in control and then

slack off of meds but i have not been able to. the mtx cleared my

skin very quick. i wish u well and if u need anything e-mail me at

popeye359@... kyle --

In @y..., Mike Pope <popeatlarge2000@y...> wrote:

> Hi, I just joined your group and am so happy to find other people

suffering from this disease. Nobody I know seems to have it or have

even heard of it. I'm 27, and until this problem started, I was in

the best shape of my life. I watch what I eat, work out regularly and

was in peak physical condition.

>

> Now I feel like an old man. I certainly look like one, limping

around all the time.

>

> I started having terrible problems with my knees last year, so I

went to a knee doctor. He told me I had a torn ligament and I had a

very expensive knee surgery. Alas, when the pain killers and anti-

inflammatory drugs wore off, I was still in pain. Now the pain had

spread to my hands and feet. Obviously, it was arthritis. So I went

to a rheumatologist who took one look at my scalp and fingernails and

told me it was psoriatic arthritis.

>

> Then something awful happened. He told me that there was no way I

could control psoriatic arthritis by diet and exercise — only drugs.

I don't believe this. He told me that I should start taking

Methotrexate. I refuse to take this drug — at least now.

>

> At this point, I want to try to find the least invasive treatment

available. I picked up " The Psoriasis Cure, " which suggests a host of

vitamin, dietary and herbal supplements. I'm now on the second week

of that program. Two days ago, I stopped taking Celebrex and now I am

in incredible pain.

>

> When I drive to work in the morning, I sit in my car and stare at

the building. It seems like such a long walk. Even worse than the

pain I feel from walking is the comments people make about my limp.

>

> My dermatologist has rheumatoid arthritis, which she controls

through diet and supplements (things like milk thistle, garlic and

evening primrose oil). I'm really hoping I can find the right

combination of dietary restrictions and supplements to control the

cause of the psoriasis and the psoriatic arthritis. Has anyone out

there had any success with this non-pharmaceutical treatment plans?

>

> [

[Guest guest]

Hi Kate

Welcome to this wonderful group. I am sorry to hear you have so much pain

and agony. I had a similar problem with my grown sons. I have two and each

one of them could not understand what was happening to me or understood why

I did not feel like doing anything. I was tired of trying to explain

everything to them so I made an appt with my doctor for each of them to go

and talk to her about my condition. It worked !! They have not been on my

back since. Now they are acting like they should. So think about it, it may

be worth a try to get your husband to speak to you doctor. Hope this helped

and good luck to you.

Gentle Hug

Sherry in SC

" In order to succeed you must fail, so that you know what not to do the next

time. "

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Thanks. That is a good idea. I have thought about it, but just been

afraid to ask. It isn't like my hubby is mean or anything. But he

is very independant and expects me to be the same. The worst he

could do is say no so I will give it a shot. I just asked him to go

with me to the NPF conference in Orlando this August - no dice. But

a trip to the doc should be relatively painless for him.

Hubby has also had arthritis - in his foot for a period of a year

when he was 20. I think he thinks he knows how I feel. Not to

minimize his experience, but I don't think he realizes how years of

arthritis and fatigue can wear you down. That and having it all over

your body.

He is a wonderful man, just not a caretaker type. Anyway, thanks for

the idea. I will definitely try that.

Kate (Philly, PA)

> Hi Kate

>

> Welcome to this wonderful group. I am sorry to hear you have so

much pain

> and agony. I had a similar problem with my grown sons. I have two

and each

> one of them could not understand what was happening to me or

understood why

> I did not feel like doing anything. I was tired of trying to

explain

> everything to them so I made an appt with my doctor for each of

them to go

> and talk to her about my condition. It worked !! They have not been

on my

> back since. Now they are acting like they should. So think about

it, it may

> be worth a try to get your husband to speak to you doctor. Hope

this helped

> and good luck to you.

>

>

> Gentle Hug

> Sherry in SC

>

> " In order to succeed you must fail, so that you know what not to do

the next

> time. "

>

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device:

http://mobile.msn.com

[Guest guest]

After being on MTX for almost 3 year, I decided to try some alternative tx. I

started taking Evening Primrose Oil 1000 mg 2x/day (which I still take) and

after about 2 months, statrted slowly weaning off the MTX (which took me

about 3 months to do)

No flares and I felt like I hit the jack pot and my energy level improved

greatly as well unitl about 2 months after the last of the MTX when I had a

terrible flare. Went back on MTX for a couple months, did not improve, then

started Enbrel (which I have been on for over a year now). The MTX (even at

low doses) seemed to give me terrible fatigue and nausea. I stopped it after

a month of enbrel was under my belt, and have felt better than ever for the

past year. Only exception is that the P is worse than when I was taking MTX.

What I learned (for me, anyway) was that while the EPO did help, it was not

sufficient to keep my PA under contol by itself.

I<> new to group>

[Guest guest]

Hi Kate,

I thought I was reading something I wrote when I found your message

about personal relations becoming strained due to how awful you

physically and mentally feel with the PA.

My husband seems to understand at times how much it truly affects

me, but I don't think he comprehends how it feels to not be able to

do the simplist of activities...opening doors, turning the key in

your ignition, walking up or down stairs, etc.

Please feel free to email me if you'd like to vent more...lol..as

long as you can take what you dish out!

Eunice

> Hi all,

> I have been lurking for a while now. It has been wonderful to

hear

> what others with PA have to say. This condition is so very

> isolating.

>

> I am 31 and was diagnosed 4 years ago. The pain has steadily

gotten

> worse overall and every few months a new joint seems to be added

to

> the list. Over the last 4 years my inflamation has affected my

feet,

> hands, knees, hips, buttocks, lower back, chest, neck and

shoulders.

> The only constant inflamation has been in my chest - who knew

there

> was a joint in your chest! I am currently taking Voltaren,

> Azulfidine, and Methotrexate. Occasionally I try to skip

something

> in an attempt to reduce the meds, but the pain and stiffness is

too

> much to bear and makes living impossible. I used to admonish my

> mother for all of the the meds she took at such a young age of 50

for

> high blood pressure, depression, etc..... Now I am her, but 20

years

> younger. Payback.

>

> I started excercising regularly 2 years ago - mainly lifting

weights

> and moderate cardio and it made a huge difference. After going

> through a 3 month period of severe pain on the bottoms of my feet,

I

> started running 2 months ago. I haven't noticed a difference in

the

> pain but mentally feel much better. I do have to be extremely

> carefull not to overdo it. I have let my friends that I run with

> goad me into doing too many miles and then I have to crash for the

> rest of the day - not worth it!

>

> I go through phases of being ok with PA. As long as I carefully

> manage my sleep, get enough naps, excercise, and don't forget to

take

> my meds. Other times I am sick to death of this ridiculous

> condition. Most of my co-workers know I have it (because they

have

> commented on my stiffness), but I always feel like they think I am

> being some sort of hypochondriac. And although my husband has

been

> very understanding and supportive, he is getting sick of it also.

He

> has even gone so far as to say that I use the PA as an excuse to

take

> long naps and make him do things for me. I, of course, need the

naps

> and the help. It is really starting to strain our relationship

and

> this is what gets me depressed the most about my condition. We

are

> both very adventurous and dynamic people, we love to travel, camp,

> hike, and do new things. But now all of these desires to have fun

> and live life to the fullest are being held hostage by PA.

> Everything is dependant on how I am feeling that day or even that

> hour.

>

> How do you deal with this? How do you balance your dreams with

the

> reality of this condition?

>

> I guess that is enough venting for now. It feels so selfish.

>

> I would love to hear how other people have coped with not being

able

> to do all of the things that they want to. And how to convey to

your

> signifant other that the fatigue is real.

>

> Kate

[Guest guest]

Hi Kate -

At almost (a young) 52, I really feel for you-guys who have gotten

this at such a young age.

I've gotten really depressed at times over the last month -- over

things like, I can't walk fast (was never a jogger!), its painful to

try to work in the garden, etc. etc. but I think one of the things

that has bothered me the most is that I can't walk around while I

teach -- at least not as much as I used to. I teach marketing in

grades 10-12. Actually, the students have been good -- I've told

them a little about what I have and that it limits movement

sometimes -- a lot.

My friends, most of them teachers, have been very supportive.

Several of them looked it up on the internet and read about it

themselves (maybe you could give your co-workers an internet address

or two). Have been wearing a band-aid because I think one of my

fingernails is close to coming off. I've been wearing " fun " band-

aids (Pooh, Elmo, patriotic, etc.) and one of the teachers gave me a

box of Harry Potters!

My husband -- so far, he's been great BUT -- we live 2 hours apart

during the week, so he only has to be 'great' on weekends. However,

he's one of these 'work it out' people and after cooking fresh

veggies last Sunday (I take the MTX on Sat. and don't feel so good

Sun.) I let him know in no uncertain terms that I was not cooking --

or doing anything-- on Sundays until further notice. This week I

downloaded a list of symptoms and effects of MTX and sent to him

(maybe you could try that too -- sometimes when its a 'source' other

than spouse, they believe it more!).

My 25 year old daughter has been too great. She still lives at home

because this is a small town and she works in town. Has no

significant other and is perfectly content to live in our big ol'

house with 3 dogs, 1 cat, and me. When I say she's been too good, I

don't want her to think that I'm becoming dependent on her so that

she wouldn't WANT to move -- because of me.

About the above suggestion. I took the symptoms list from:

http://www.wpunj.edu/icip/pa/symptoms.htm Maybe you could just

print up your own list (along with the site address) and make a few

copies. Then tell your co-workers that you really appreciate their

support, etc. etc. etc. and since there are so many cases of this

that go misdiagnosed, you printed these sheets so that they would

know the symptoms in case anyone in their family comes up with it.

Take care,

Debby

***********

How do you deal with this? How do you balance your dreams with

the

> reality of this condition?

>

> I guess that is enough venting for now. It feels so selfish.

>

> I would love to hear how other people have coped with not being

able

> to do all of the things that they want to. And how to convey to

your

> signifant other that the fatigue is real.

>

> Kate

[Guest guest]

Tom,

I almost hate to see a new member. I am new to this group also. It does help

to have someone to talk to who knows what you are going through. Sometimes I

wish that everything on me that hurt just glowed bright purple so everyone could

see I was not faking!

This may be a great opportunity for you to go to school. Sometimes we don't

make big changes unless we are forced into it. Are you a spiritual person?

Maybe this is God's way of moving you along. Just a thought--

Keep up with your drs. visits. Get plenty of rest. Let your wonderful wife

help you. And most of all--just hang in there. The improvements in arthrits

treatment just over the last ten years have been astronomical. There is always

something in the works. Hope you find the right combination soon!

Eva

savaget11 <thomas.w.savage@...> wrote: I am new to this group and like

you all I have been diagnosed with

PA. A little history into my life. I am 32 years old, in the Army

and I have been for 11 years. I am currently pending a medical

discharge from the military because of how PA has limited my ability

to perform my job. I can no longer function like I used to be able

to and now my life has been turned upside down.

I first noticed a skin problem about two years ago when my unit came

out of the field. I thought at first it was just due to poor hygiene

by being out in the woods and tried to treat it with over the counter

medication. I was told that I had everything from excema (sp) to

jock itch and given various creams. I started to have problems with

my joints about 18 months ago. It got to the point where I had

trouble picking up things and performing phyical activities. I went

to the military doctors and was told that I had stress fractures in

my legs, carpal tunnel in my wrists. I was told by a phyical

therapist that it was just stress and to get over it. It was not

until September 2001 that I went to see another doctor about pain in

my feet and hands that I was asked how long I had had psoriasis. I

did not even know what that was at the time. She then connected the

two and made a preliminary diagnosis of PA. Then it was time to see

the specialists. I went to a Rheumatology doctor (two hour drive)

and was told that I might have it but he needed more proof before a

diagnosis could be made, this was in November. So I waited and went

back to him in February and there was still no signs of it on X Ray.

He decided to have a bone scan done to see if that could pick it up

and sure enough it did. He then placed me on MTX, folic acid and

Naprocin. I have been on this treatment since March 2002 and have

experienced little improvement.

I have been on Enbrol, which did nothing for me, Prednisone, which

was wonderful...too bad it is a steroid and the doctors do not want

me on this. Too many topical creams to mention. My life has been

completely turned around. I now have to leave the military after 11

years (halfway to retirement) and find a new career/go to school. I

have trouble opening doors, jars, etc. sitting for long periods of

time, standing for long periods of time, walking up and down stairs,

walking long distances, and all of the other common symptoms. I have

times where I become severely depressed and just wish that I could

be " normal " again. The only bright spot in this whole ordeal is the

support of my wife, who has made this at least bearable. I do not

know how far I would have gotten if not for her.

Well enough about that. I just wanted to introduce myself and would

be more than happy to talk with others who are sharing the same.

This disease is lonely as I have heard others put it, and no one

really understands the daily pain that a PA sufferer has to endure.

So far today has been a " good day " .

Tom Savage

[Guest guest]

Hi , I'm sorry that you ended up with this. My name is Terry, we live in southern Az just out side of Phoenix. I found out last year about my Hep C & have been on treatment seance January. This group is very supportive and suport you in any way to chose to deal with this or even not dealing with it.

Terry

M B <bestofmarys57@...> wrote: <P>Hi Group ~~</P><P>I'm a new member that was recently diagnosed withHepatitis C a couple of months ago so I am juststarting this journey. & nbsp; I am the third member ofmy family (two brothers also) to be diagnosed. & nbsp;One brother chooses to do nothing about it and theother is unable to take treatment since he is inactive Major Depression. & nbsp; I have also had acouple of friends who have been on thetreatment. & nbsp; So, I am not a total stranger to thedisease.</P><P>Since being diagnosed, I have done research to gainmore knowledge and have learned a bit but I'm surethere's lots more to learn. & nbsp; I also thought beinga part of a support group would be a good idea, so Iam glad you are here.</P><P>My lab work (including liver enzymes and liverpanel) have come back with nothing out of the normexcept for the HCV RNA which showed activedisease. & nbsp; My liver ultrasound came back normal aswell. & nbsp; On July 12 I have an appointment with thespecialized Hep C Clinic and can maybe get type testedand see what they have to say about where I am.</P><P>I'm looking forward to getting to know you andsharing this journey with you all.</P><P>Regards, & nbsp; </P>__________________________________________________

[Guest guest]

Hi

Welcome to the group. I think you will find us friendly and supportive.

I have been through two rounds of treatment and still have not been able to

clear the virus. The first time I cleared the virus but relapsed. The second

time I didn't clear it completely. I don't know if the VA will let me try

the peg intron combo treatment or not. It wasn't available when I was

treated the last time.

[ ] New To Group

> <P>Hi Group ~~</P>

> <P>I'm a new member that was recently diagnosed with

> Hepatitis C a couple of months ago so I am just

> starting this journey. & nbsp; I am the third member of

> my family (two brothers also) to be diagnosed. & nbsp;

> One brother chooses to do nothing about it and the

> other is unable to take treatment since he is in

> active Major Depression. & nbsp; I have also had a

> couple of friends who have been on the

> treatment. & nbsp; So, I am not a total stranger to the

> disease.</P>

> <P>Since being diagnosed, I have done research to gain

> more knowledge and have learned a bit but I'm sure

> there's lots more to learn. & nbsp; I also thought being

> a part of a support group would be a good idea, so I

> am glad you are here.</P>

> <P>My lab work (including liver enzymes and liver

> panel) have come back with nothing out of the norm

> except for the HCV RNA which showed active

> disease. & nbsp; My liver ultrasound came back normal as

> well. & nbsp; On July 12 I have an appointment with the

> specialized Hep C Clinic and can maybe get type tested

> and see what they have to say about where I am.</P>

> <P>I'm looking forward to getting to know you and

> sharing this journey with you all.</P>

> <P>Regards, & nbsp; </P>

>

> __________________________________________________

>

[Guest guest]

Welcome . My name is Dave and this group has helped me along for quite some time. I was about in the spot you are and have since had my biopsy, scheduled treatment, went through the treatment and have just now tested negative (undetectable) after 6 mos off of treatment. I am from Green Bay, WI. We have members all around the country. Sounds like you are getting yourself well-informed. I think the support group is helpful, because doctors are not always as knowledgable as they should be about sides, etc. and there is a lot of misinformation on the net too. My dr hated that I got so much info on the net, he thought it was scaring me unnecessarily, but truthfully most of it was good. I learned more here, though than any one other place. These people have been through it, you'll get to know them and know how we feel day to day while on the treatment, etc. Ask any question you feel comfortable with and somebody will probably be able to help you. We make no judgements and sponsor no particular method of treatment or non treatment. It's a personal choice. We're just here to help each other understand and cope with what is going on. Your normal life's routine has just taken a good shaking up and it takes some time to adapt. Boy, I'm long winded today... Anyway Hi! -dz-

M B <bestofmarys57@...> wrote: <P>Hi Group ~~</P><P>I'm a new member that was recently diagnosed withHepatitis C a couple of months ago so I am juststarting this journey. & nbsp; I am the third member ofmy family (two brothers also) to be diagnosed. & nbsp;One brother chooses to do nothing about it and theother is unable to take treatment since he is inactive Major Depression. & nbsp; I have also had acouple of friends who have been on thetreatment. & nbsp; So, I am not a total stranger to thedisease.</P><P>Since being diagnosed, I have done research to gainmore knowledge and have learned a bit but I'm surethere's lots more to learn. & nbsp; I also thought beinga part of a support group would be a good idea, so Iam glad you are here.</P><P>My lab work (including liver enzymes and liverpanel) have come back with nothing out of the normexcept for the HCV RNA which showed activedisease. & nbsp; My liver ultrasound came back normal aswell. & nbsp; On July 12 I have an appointment with thespecialized Hep C Clinic and can maybe get type testedand see what they have to say about where I am.</P><P>I'm looking forward to getting to know you andsharing this journey with you all.</P><P>Regards, & nbsp; </P>__________________________________________________

[Guest guest]

Hi, ,

Welcome to the group. I'm from Vermont, also have hep C, and have

been

on Peg-Intron for ten weeks now. This group has been very helpful to me and

I'm

sure it will be for you, too. What part of the country, or what other

country, do you live in?

Best wishes,

[Guest guest]

Welcome , I'm Sharon. I've been on treatment for

34 weeks(only 14 more to go). I'm already undetectable

after starting out with a viral load >850,000. This is

a great group of very supportive people. I'm sorry we

all had to meet this way, but in some ways I'm

grateful that this disease allowed me to meet so many

great people.

Sharon

>

__________________________________________________