New to the Group

[Guest guest]

Hope it's not in your hands or wrists. Are you taking meds? I start Enbrel this

week. Former jazz vocalist here (if there is such a thing as former). Yes...I

know Blackfoot. Glad you are still around. -Betz

xgtrstr <xgtrstr@...> wrote: I am a Musician, had PA for about 11 years,

found out about a year ago.

Thought I was crazy, but I see that I am not, nor am I alone, Thanks

BB

www.blackfootrocks.com

[Guest guest]

Hi BB:

According to my little knowledge about PA, I think stress is a cause. I am

thankful to this group for info, support,...However, you should not think that

the worst case senario that you may read about here is going to occur to you.

If you think that, then the stress level will increase and that may accelerate

the progress of PA.

I read great people in this group, and I thank God that they exist.

xgtrstr <xgtrstr@...> wrote:

I am a Musician, had PA for about 11 years, found out about a year ago.

Thought I was crazy, but I see that I am not, nor am I alone, Thanks

BB

www.blackfootrocks.com

[Guest guest]

mona_1786 (Mona) wrote:

Hello everybody I am new to this group, I did privately email Bee once

about some questions I had regarding the diet. I have a few more

questions. I have cea and I take anti-histamine medication daily,

how will this interfere with the diet? I know this diet is something I

need to do for my health and over-all well-being but because of the

cea taking the anti-histamines is also important because I can't

imagine even one day without taking them. I'm sure other people on this

site who have cea can relate because its the only thing that makes

me feel like I am control of my condition, in control of my flushing.

Just wanted to get some feedback from fellow ceans and non-

ceans alike about how they are doing the diet and still taking

medication.

Thank you this really means alot. Blessings,

Mona

-----

Hi Mona

I also have cea (I'm 'redhotoz' a Moderator of the cea Forum). I started

slowly introducing myself to Bee's diet in April and went off antibiotics 3rd

May this year. I have to say, replacing medications with this diet has been

great for my skin! I know it's scary to think about not taking anything for

cea but it CAN be done! If you are worried about not taking anti-histamines,

then wean yourself off slowly as you introduce yourself to the diet. If you are

really worried about going off anti-histamines, stick with them for the first

part, try the diet and then try to wean off them. Time is on your hands. I also

use red light therapy on my face for it's anti-inflammatory effect. It's in the

photo section of the Forum http://forum.rosaceagroup.org/viewtopic.php?t=3542 if

you're interested.

Personally, I believe that what we see on our faces is the symptom of what is

going on inside our bodies. I've done a LOT of reading on cea but won't bore

everyone here with my thoughts on it! LOL This diet will get you on a natural

healing path. There will be times of ups and downs as you heal naturally but it

will be worth it! Heck, I have seen such great improvement in my face in just a

short amount of time, as have others with cea on this diet, who have been on

it longer than I have. What have you got to lose?!

Go in with a positive attitude. Do it slowly and read all the info you can in

Bee's files.

You won't regret it! I'll be here (on or off this group, in the cea Forum or

the cea Support Group...I'm all over the place! LOL) if you want extra

cean support!

Luv Jen x

[Guest guest]

Welcome and I hope we CAN help you. I admire you for managing to continue to

work despite all you are enduring. I can't offer advise but I'll " listen " as the

others help you and keep you in my prayers and thoughts. I don't see how you are

managing. Incredible. -Betz

Betsy Jack itsbetsy@...

[ ] New to the group

I just found this group today and just wanted to say hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

I've had psoriasis since I was 12-years-old (I'm 50 now) and

psoriatic arthritis since 1993 though it wasn't diagnosed by a

rheumatologist until 2000, when I was also diagnosed (blood tests)

with rheumatoid arthritis. That same year (2000) I was also

diagnosed with COPD (chronic obstructive pulmonary disease) due to a

few bouts of undiagnosed pneumonia, so I have fairly severe lung

scarring.

Currently I am working but I have no medical coverage at all and

haven't had any for the last 3 years. So getting any treatment is a

huge problem for me. I also am not able to use any of the newer PA

or RA drugs as almost all of them (it seems) have either a risk of

infection or lung problems. Due to my COPD I have to be very

careful about any possible infections to my lungs.

I am hoping that through this group I may be able to find some

alternative treatments or advice for managing PA. Though I do have

breathing problems the PA is the more painful condition. Also the

most embarassing for me. My fingers and toes are all permanently

bent at odd angles and very painful. My fingernails and toenails

are all yellow, severely pitted and infected all of the time. I have

no cuticles left and the skin all around the nails looks like

regular psoriasis. I wear shoes that are two sizes too big because

of the way my toes are bent. The people where I work and out in the

world are always staring at my hands, I guess they are trying to

figure out if I have something contagious or something. (That's if

they're not staring at my regular psoriasis.)

I also have severe knee pain (both knees), shoulder pain (both

shoulders, I can't lift my arms) and neck pain. I don't know if the

knee and shoulder pain is more related to my PA or my RA. Right now

I can't afford more tests. So far, my spine doesn't seem to be

involved which I think is a good thing. Mornings are torture for

me, however.

In 2000 I was on Celebrex and methotrexate but it didn't help at

all. I've also been on Ultravate ointment for the regular psoriasis

but it hasn't helped very much except to soften it up some.

Any advice or suggestions are very welcome!

[Guest guest]

I've gotten completely messed up here. I have different emails showing

up in odd threads. I'm trying to make sense of it, so I appollogize if

I am messing anyone else up.

Welcome to the other newbies I read about. I am one also, just two or

three days. Can someone answer some questions I have more than just a

few I've posted so far.

OH, actually I have a solution for whoever posted about lack of income,

but only 50y/o, The way I did it, at age 27, was in Washington State, I

applied for disability through our state welfare system, we call it

DSHS (dept. of Social and Health Services.) Anyway, I applied for their

disability. Once I was declared disabled, it only took a couple of

months to have Social Security declare me disables and I began

receiving supplemental security Income. You have to have worked for the

last 'x' amount ofg quarters, but that was, for me anyway, easy. Now I

get income for both my girls and for myself. I also after a year got

medicare. Medicade was a big help in the meantime. Medicare with

medicade is now completely confusing, but that's for another posting.

Basically, disability is a good place to start if you can't work any

more.

Just my own experience, but I hope it helps someone.

>

> Hi Vana-

> I'm 34 had Psoriasis as long as I can remember.

> Luckily my P stayed hidden in my scalp. Just after my

> first son I started having a lot of pain. Then when I

>

[Guest guest]

Hi there, Summertyme,

I am glad you found this site: if you have no insurance, the

combined knowledge, experience and compassion of the people you find

here can offer you some relief. Do you live alone? Do you have

many friends near you? I ask this because a person's family and

friends are assets that can help you maintain some quality of life.

Also, I am curious about the type of work that you do and if it

looks as though you will be able to continue working through your

pain and decreased mobility? I believe that you need to be under the

care of a good rhuematologis. With no insurance, I worry that you

believe you cannot afford to have one who is working hard on your

behalf. I assume you are an American, may I ask in which state do

you live? I ask this because there may be resources available to

you that people here may be able to help you find.

Best wishes, ...Brent

>

> I just found this group today and just wanted to say hi and

> introduce myself a bit. I don't have a lot of time to be on the

> computer but I'll try to contribute when I can.

>

> I've had psoriasis since I was 12-years-old (I'm 50 now) and

> psoriatic arthritis since 1993 though it wasn't diagnosed by a

> rheumatologist until 2000, when I was also diagnosed (blood tests)

> with rheumatoid arthritis. That same year (2000) I was also

> diagnosed with COPD (chronic obstructive pulmonary disease) due to

a

> few bouts of undiagnosed pneumonia, so I have fairly severe lung

> scarring.

>

> Currently I am working but I have no medical coverage at all and

> haven't had any for the last 3 years. So getting any treatment is

a

> huge problem for me. I also am not able to use any of the newer PA

> or RA drugs as almost all of them (it seems) have either a risk of

> infection or lung problems. Due to my COPD I have to be very

> careful about any possible infections to my lungs.

>

> I am hoping that through this group I may be able to find some

> alternative treatments or advice for managing PA. Though I do have

> breathing problems the PA is the more painful condition. Also the

> most embarassing for me. My fingers and toes are all permanently

> bent at odd angles and very painful. My fingernails and toenails

> are all yellow, severely pitted and infected all of the time. I

have

> no cuticles left and the skin all around the nails looks like

> regular psoriasis. I wear shoes that are two sizes too big because

> of the way my toes are bent. The people where I work and out in

the

> world are always staring at my hands, I guess they are trying to

> figure out if I have something contagious or something. (That's if

> they're not staring at my regular psoriasis.)

>

> I also have severe knee pain (both knees), shoulder pain (both

> shoulders, I can't lift my arms) and neck pain. I don't know if

the

> knee and shoulder pain is more related to my PA or my RA. Right

now

> I can't afford more tests. So far, my spine doesn't seem to be

> involved which I think is a good thing. Mornings are torture for

> me, however.

>

> In 2000 I was on Celebrex and methotrexate but it didn't help at

> all. I've also been on Ultravate ointment for the regular

psoriasis

> but it hasn't helped very much except to soften it up some.

>

> Any advice or suggestions are very welcome!

>

[Guest guest]

Welcome to the group. I'm sorry you've had to deal with so much. I have

shoulder pain with my PA. I was diagnosed in 2004. The shoulder pain started

in 2005 along with knee pain. My pain cycles around from area to the next from

day to day. One day my knees hurt, the next day my shoulders hurt, then the

next day everything hurts. It seems like this disease throws something new your

way when you least expect it.

Has your doc given you pain medicine for PA? Maybe you can ask for generic pain

medicine that is cost efficient. Just an idea. I take Salsalate for PA

that's an NSAID. It is fairly reasonably priced if I remember correctly.

I wish you less pain in the days ahead!

Rhonda

[ ] New to the group

I just found this group today and just wanted to say

hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

I've had psoriasis since I was 12-years-old (I'm 50 now) and

psoriatic arthritis since 1993 though it wasn't diagnosed by a

rheumatologist until 2000, when I was also diagnosed (blood tests)

with rheumatoid arthritis. That same year (2000) I was also

diagnosed with COPD (chronic obstructive pulmonary disease) due to a

few bouts of undiagnosed pneumonia, so I have fairly severe lung

scarring.

Currently I am working but I have no medical coverage at all and

haven't had any for the last 3 years. So getting any treatment is a

huge problem for me. I also am not able to use any of the newer PA

or RA drugs as almost all of them (it seems) have either a risk of

infection or lung problems. Due to my COPD I have to be very

careful about any possible infections to my lungs.

I am hoping that through this group I may be able to find some

alternative treatments or advice for managing PA. Though I do have

breathing problems the PA is the more painful condition. Also the

most embarassing for me. My fingers and toes are all permanently

bent at odd angles and very painful. My fingernails and toenails

are all yellow, severely pitted and infected all of the time. I have

no cuticles left and the skin all around the nails looks like

regular psoriasis. I wear shoes that are two sizes too big because

of the way my toes are bent. The people where I work and out in the

world are always staring at my hands, I guess they are trying to

figure out if I have something contagious or something. (That's if

they're not staring at my regular psoriasis.)

I also have severe knee pain (both knees), shoulder pain (both

shoulders, I can't lift my arms) and neck pain. I don't know if the

knee and shoulder pain is more related to my PA or my RA. Right now

I can't afford more tests. So far, my spine doesn't seem to be

involved which I think is a good thing. Mornings are torture for

me, however.

In 2000 I was on Celebrex and methotrexate but it didn't help at

all. I've also been on Ultravate ointment for the regular psoriasis

but it hasn't helped very much except to soften it up some.

Any advice or suggestions are very welcome!

[Guest guest]

I just had another idea here. Do you have a Sam's Club Card. I don't know how

much this costs, but they offer health insurance coverage to their members at a

group discount. I'm trying to help. I feel for you. I get so frustrated at

insurance, but sometimes it seems like dealing with it, it's more of a curse

than a blessing.

I know I couldn't get through the days if I didn't have medicine. Have you

tried the Imitation Croc shoes from Payless Shoes? They are pretty comfortable.

The Wal-Mart imitation one's are hard on your feet. Otherwise they are soft and

so comfortable to walk on. Try them on before you buy them. They are sized

differenlty than normal shoes.

I've so many things to deal with these past few months, I know that's why my

current flare has set in motion. Not to mention my doc took me off Methotrexate

because I was nausauted with it 24/7. It was horrible. I was on the lowest

dosage 1x a week. That is a factor to this flare too, waiting for the right

treatment for me. This disease has taken it's toll on my nerves lately too.

It's a challenge to live in pain daily. I didn't deal with pain before very

well anyway.

I have been taking one day at a time, thanking God for the good days and being

grateful for the places not affected by PA. That changes constantly.

Rhonda

[ ] New to the group

I just found this group today and just wanted to say hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

I've had psoriasis since I was 12-years-old (I'm 50 now) and

psoriatic arthritis since 1993 though it wasn't diagnosed by a

rheumatologist until 2000, when I was also diagnosed (blood tests)

with rheumatoid arthritis. That same year (2000) I was also

diagnosed with COPD (chronic obstructive pulmonary disease) due to a

few bouts of undiagnosed pneumonia, so I have fairly severe lung

scarring.

Currently I am working but I have no medical coverage at all and

haven't had any for the last 3 years. So getting any treatment is a

huge problem for me. I also am not able to use any of the newer PA

or RA drugs as almost all of them (it seems) have either a risk of

infection or lung problems. Due to my COPD I have to be very

careful about any possible infections to my lungs.

I am hoping that through this group I may be able to find some

alternative treatments or advice for managing PA. Though I do have

breathing problems the PA is the more painful condition. Also the

most embarassing for me. My fingers and toes are all permanently

bent at odd angles and very painful. My fingernails and toenails

are all yellow, severely pitted and infected all of the time. I have

no cuticles left and the skin all around the nails looks like

regular psoriasis. I wear shoes that are two sizes too big because

of the way my toes are bent. The people where I work and out in the

world are always staring at my hands, I guess they are trying to

figure out if I have something contagious or something. (That's if

they're not staring at my regular psoriasis.)

I also have severe knee pain (both knees), shoulder pain (both

shoulders, I can't lift my arms) and neck pain. I don't know if the

knee and shoulder pain is more related to my PA or my RA. Right now

I can't afford more tests. So far, my spine doesn't seem to be

involved which I think is a good thing. Mornings are torture for

me, however.

In 2000 I was on Celebrex and methotrexate but it didn't help at

all. I've also been on Ultravate ointment for the regular psoriasis

but it hasn't helped very much except to soften it up some.

Any advice or suggestions are very welcome!

[Guest guest]

Hi Rhonda,

I was taken of my Metho also cause I started breaking out, he said in rare cases

that can happen. I go back in a month to see what is next. Good Luck.

Jeanette

Re: [ ] New to the group

I just had another idea here. Do you have a Sam's Club Card. I don't know how

much this costs, but they offer health insurance coverage to their members at a

group discount. I'm trying to help. I feel for you. I get so frustrated at

insurance, but sometimes it seems like dealing with it, it's more of a curse

than a blessing.

I know I couldn't get through the days if I didn't have medicine. Have you

tried the Imitation Croc shoes from Payless Shoes? They are pretty comfortable.

The Wal-Mart imitation one's are hard on your feet. Otherwise they are soft and

so comfortable to walk on. Try them on before you buy them. They are sized

differenlty than normal shoes.

I've so many things to deal with these past few months, I know that's why my

current flare has set in motion. Not to mention my doc took me off Methotrexate

because I was nausauted with it 24/7. It was horrible. I was on the lowest

dosage 1x a week. That is a factor to this flare too, waiting for the right

treatment for me. This disease has taken it's toll on my nerves lately too. It's

a challenge to live in pain daily. I didn't deal with pain before very well

anyway.

I have been taking one day at a time, thanking God for the good days and being

grateful for the places not affected by PA. That changes constantly.

Rhonda

[Guest guest]

Hello Brent and thank you and many others for your kind letters of

support. I forgot to put my name in my original post! It is

Peggy. I live in Pennsylvania, USA. I'm single with no family

really near me except for a sister who does help me out around the

house whenever she can.

I currently work in a factory environment as I have throughout my

life. I just started working here about a year ago as the last

place I worked closed (in 2003) due to the economy. I had worked

there for 20 years and they were very accomodating to my continuing

physical disabilities. Since they closed I have had a number of

different factory jobs - many of which I just couldn't physically

handle any more. Even the job I am in now is pretty difficult for

me and requires that I be standing on cement for 9 hours per day

with a lot of walking involved. I am pretty much delirious with

pain by the time I get home each day and not good for much. I'm on

no perscription medicines at this time due to lack of coverage, I

just have been taking handfuls of ibuprofen a few times a day. I

can't say it really helps but I don't know what else to do.

I know that someone mentioned disability which I did apply for but

they required that I be out of work for 5 months (which would have

me living on the street) and they also felt that I just didn't have

enough medical records for the last few years to give them a clear

view of my current physical condition. They did send me to one of

their doctors who really did no testing whatsoever, just weighed me,

took my blood pressure and sent me on my way. They bascially told

me that since I was still able to walk to some degree I should be

able to get a parttime job making over their limit of $800 a month.

The welfare agency referred me to the Legal Aide people, they felt I

needed to have at least a year of current medical records before

they would be willing to fight the Disability people.

I have no choice but to try to keep working - I have no income but

what I can earn and no one that can help me financially. The

welfare people did supply me with food stamps for two months, which

was very helpful and kind. I was also put on a long list of adults

in Pennsylvania without medical coverage. They did warn me that it

could take up to 2 years before I hear anything on that score

though.

I am pretty much at my wits end not knowing what to do and every day

I am afraid I will lose my current job due to my physical

limitations. They have been as helpful as they can be in this

situation. However the amount of money I make barely covers the

necessities and there is just nothing left for medical coverage or

even doctors visits. I just try to make do the best I can.

The legal aid people did suggest that I go the emergency room of a

local hospital in order to get treatment and to get some medical

records for Disability. I have to admit the thought frightens me

because I'm afraid I will wind up being put into the hospital and

will wind up losing my job. Every time my lungs have been x-rayed

they have put me into the hospital. I've had a number of lung

biopsies because they always think I have cancer but it turns out to

be scar tissue from pneumonia.

Even when I did have medical coverage they always concentrated more

on my lungs than on my RA or PA. My rheumatologist got short shift

compared to the pulmonologist and primary care physicians. The

funny thing is, it was my rheumatologist that discovered my lung

problems. The first time I was sent to him for my RA he diagnosed

my PA and thought that something didn't " look right " with me. He

listened to my lungs and called my primary and told him to have me

sent for lung x-rays. Apparently I had pneumonia even than and my

primary had totally missed it.

I'm sorry this reply is so long, I really don't have anyone who I

can discuss these things with who understands just how painful PA

can be. I do have breathing problems but it is the pain of PA and RA

that limits me more than anything else.

Thank you so much for listening and letting me rant on!

Peggy

>

> Hi there, Summertyme,

>

> I am glad you found this site: if you have no insurance, the

> combined knowledge, experience and compassion of the people you

find

> here can offer you some relief. Do you live alone? Do you have

> many friends near you? I ask this because a person's family and

> friends are assets that can help you maintain some quality of

life.

> Also, I am curious about the type of work that you do and if it

> looks as though you will be able to continue working through your

> pain and decreased mobility? I believe that you need to be under

the

> care of a good rhuematologis. With no insurance, I worry that you

> believe you cannot afford to have one who is working hard on your

> behalf. I assume you are an American, may I ask in which state do

> you live? I ask this because there may be resources available to

> you that people here may be able to help you find.

>

> Best wishes, ...Brent

>

[Guest guest]

Hello, Rhonda, and thank you for your thoughtful post. We don't

have a Sam's Club close by but there is a BJ's (sort of the same

thing) not too far away. I'll have to check and see if they offer

any type of insurance. Where I am working they do offer medical

coverage but it about $90. a month and I just can't afford it.

Maybe BJ's will offer something much cheaper. I can check. I'll

also look into the Imitation Croc shoes at Payless. Do you know if

they are expensive? I am currently wearing shoes I got at the local

Target store, they are not good for my feet at all, but they were

all I could afford - they were marked down to $14.00. I've been

wearing them for 8 months so it is no wonder that my feet hurt me so

much, I guess.

I do understand that dealing with insurance and insurance people can

be very frustrating. You have my sympathy there. It's so hard to

get any kind of medical care without some sort of insurance though.

Try to hang in there with it. Keep trying to take one day at a

time. I'll be praying for you, believe me, without God I know I

wouldn't be making it through the day.

Peggy

>

> I just had another idea here. Do you have a Sam's Club Card. I

don't know how much this costs, but they offer health insurance

coverage to their members at a group discount. I'm trying to help.

I feel for you. I get so frustrated at insurance, but sometimes it

seems like dealing with it, it's more of a curse than a blessing.

>

> I know I couldn't get through the days if I didn't have

medicine. Have you tried the Imitation Croc shoes from Payless

Shoes? They are pretty comfortable. The Wal-Mart imitation one's

are hard on your feet. Otherwise they are soft and so comfortable

to walk on. Try them on before you buy them. They are sized

differenlty than normal shoes.

>

> I've so many things to deal with these past few months, I know

that's why my current flare has set in motion. Not to mention my

doc took me off Methotrexate because I was nausauted with it 24/7.

It was horrible. I was on the lowest dosage 1x a week. That is a

factor to this flare too, waiting for the right treatment for me.

This disease has taken it's toll on my nerves lately too. It's a

challenge to live in pain daily. I didn't deal with pain before

very well anyway.

>

> I have been taking one day at a time, thanking God for the good

days and being grateful for the places not affected by PA. That

changes constantly.

>

> Rhonda

>

>

>

>

>

[Guest guest]

In a message dated 6/18/2006 6:33:49 P.M. Pacific Daylight Time,

summertyme1113@... writes:

Thank you so much for listening and letting me rant on!

Peggy

Hi Peggy, you might want to look on the Psoriasis Foundation website...they

may be able to help with the disability process and what is needed...

[Guest guest]

Hi Peggy,

Thank you for sharing.

I am glad that you have a helpful sister. I am also glad you were

able to tell those of us what has been going on for you. In this

way we can help you better, and thus, increase our worth by being

able to help another. Besides, it sounded like it has been getting

bottled up and you needed to get it out. I read in your post to

another, that you pray to God. Do you attend a church? If you are

sincere in your belief in God, perhaps there is a church nearby you

that has some way to help you, even if you are not a member.

Perhaps they can help get you under a doctor's care for long enough

for you to get the documentation and that you require so that you

can get more help.

It seems to me you have worked hard in your life and that you have

not asked to be nor wallowed in your condition. I personally can no

longer imagine a couple of hours spent walking concrete - let alone

a day! You never expected to lose your job and insurance due to a

plant closure. But, it has happened, and you need help! You can't

even buy yourself some new shoes.

Would you be adverse to going to a church to see if there was

someone at a church who could help? I know that even the paperwork

and the communicating with government agencies can be more tiring

than I would want to do after a full day's work. If nothing else,

perhaps there is someone who could do some running and phoning and

advocacy work for you. Your body is destroying itself, and you have

about a 99% chance of it continuing on that trend unless you get

some good professional medical care. Gobbling handfuls of Ibuprofen

is not the way to treat this disease.

I'm now hoping that those people from PA with PA will read your

plight and come forward to provide some other possibilities for you

that I know nothing about (as I live in Canada). Best wishes and

take care. Peace be with you. ...Brent

>

> Hello Brent and thank you and many others for your kind letters of

> support. I forgot to put my name in my original post! It is

> Peggy. I live in Pennsylvania, USA. I'm single with no family

> really near me except for a sister who does help me out around the

> house whenever she can.

>

> I currently work in a factory environment as I have throughout my

> life. I just started working here about a year ago as the last

> place I worked closed (in 2003) due to the economy. I had worked

> there for 20 years and they were very accomodating to my

continuing

> physical disabilities. Since they closed I have had a number of

> different factory jobs - many of which I just couldn't physically

> handle any more. Even the job I am in now is pretty difficult for

> me and requires that I be standing on cement for 9 hours per day

> with a lot of walking involved. I am pretty much delirious with

> pain by the time I get home each day and not good for much. I'm

on

> no perscription medicines at this time due to lack of coverage, I

> just have been taking handfuls of ibuprofen a few times a day. I

> can't say it really helps but I don't know what else to do.

>

> I know that someone mentioned disability which I did apply for but

> they required that I be out of work for 5 months (which would have

> me living on the street) and they also felt that I just didn't

have

> enough medical records for the last few years to give them a clear

> view of my current physical condition. They did send me to one of

> their doctors who really did no testing whatsoever, just weighed

me,

> took my blood pressure and sent me on my way. They bascially told

> me that since I was still able to walk to some degree I should be

> able to get a parttime job making over their limit of $800 a

month.

> The welfare agency referred me to the Legal Aide people, they felt

I

> needed to have at least a year of current medical records before

> they would be willing to fight the Disability people.

>

> I have no choice but to try to keep working - I have no income but

> what I can earn and no one that can help me financially. The

> welfare people did supply me with food stamps for two months,

which

> was very helpful and kind. I was also put on a long list of

adults

> in Pennsylvania without medical coverage. They did warn me that it

> could take up to 2 years before I hear anything on that score

> though.

>

> I am pretty much at my wits end not knowing what to do and every

day

> I am afraid I will lose my current job due to my physical

> limitations. They have been as helpful as they can be in this

> situation. However the amount of money I make barely covers the

> necessities and there is just nothing left for medical coverage or

> even doctors visits. I just try to make do the best I can.

>

> The legal aid people did suggest that I go the emergency room of a

> local hospital in order to get treatment and to get some medical

> records for Disability. I have to admit the thought frightens me

> because I'm afraid I will wind up being put into the hospital and

> will wind up losing my job. Every time my lungs have been x-rayed

> they have put me into the hospital. I've had a number of lung

> biopsies because they always think I have cancer but it turns out

to

> be scar tissue from pneumonia.

>

> Even when I did have medical coverage they always concentrated

more

> on my lungs than on my RA or PA. My rheumatologist got short

shift

> compared to the pulmonologist and primary care physicians. The

> funny thing is, it was my rheumatologist that discovered my lung

> problems. The first time I was sent to him for my RA he diagnosed

> my PA and thought that something didn't " look right " with me. He

> listened to my lungs and called my primary and told him to have me

> sent for lung x-rays. Apparently I had pneumonia even than and my

> primary had totally missed it.

>

> I'm sorry this reply is so long, I really don't have anyone who I

> can discuss these things with who understands just how painful PA

> can be. I do have breathing problems but it is the pain of PA and

RA

> that limits me more than anything else.

>

> Thank you so much for listening and letting me rant on!

>

> Peggy

>

[Guest guest]

Hi Peggy,

I read what you said and Im so sorry what has been happening to you. I hope

things will work out for you. Im in Canada and I have heard how hard it is to

go on disability what you have to go through to let them know you are ill and

unable to work. I find that it hard to prove doctors and others how painful it

is to have PA specially if you are on the first stage of learning about PA and

how to leave with it. Im on long term disability through work and part

disability pension. I had fill out forms after form and doctors report and this

goes on as if my disability will get better or cured. I hate to say this but the

only reason I got acceptted is because my illness got worse and I had heart

attack and lung problem which they also discouvered Bronchiiectasis and liver

problem and retal damage all related to PA. What also helped is find the right

Rheumatoligist and MD that you can see when you can specially when you have

cronic pain cause doctors note is very important.

I kept working until my PA got worse and my body doesn't work as well as it use

to be. Many things you have learn to live with PA.

I hope things will work out for you and I know how hard it is to leave with

little money and having chronic pain is hard to lieve with. We in this group are

here for you and share your pain.

take care t

[Guest guest]

As far a prescrpition meds go, there are all sorts of fiancial aid for

people with no insurance. Check larger drugs company websites like

pfizer, amgen and abbott and there might be links to assistance

programs. You may have to go to a doctor, but at least you might be

able to get some type of medication to help deal with your pain. I'm

very physical at my job too, and I know what you mean about being

delious by tthe end of the day. My job is somewhat accomidating, but

I have to deal with a lot of walking and standing during my day or I

basically can't do my job. Hang in there!

[Guest guest]

It seems this group, in general, is not big on alternative treatments. I am

finding the book The Anti-Inflammation Zone by Dr. Barry Sears interesting. In

addition to his Zone Diet, he is a big proponent of high-dose fish oil.

Unfortunately, alternative treatments are not inexpensive either.

Sandi K

[Editor's Note: Sandi, there are a great many con artists out there who are

eager to make claims about treatments and cures and take our money. These folks

are not regulated, their work is not studied, their ill-effects are not

disclosed. At least with " conventional " treatments, it's pretty much all out

there and when additional adverse information is uncovered, it is usually (but

certainly not always) disclosed. Adverse information on alternative treatments

is NEVER disclosed and in the end, virtually none of them stand up to scientific

scrutiny or work beyond a short period of time. There are plenty of sites for

people wishing to pursue alternative treatments, but this site emphasizes the

things that have been found to work best for most of us. Our medications are

studied, regulated, tested, re-tested, re-studied and subject to quality

assurance - none of which can be said for the alternatives. Kathy F.]

[ ] New to the group

I just found this group today and just wanted to say hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

I've had psoriasis since I was 12-years-old (I'm 50 now) and

psoriatic arthritis since 1993 though it wasn't diagnosed by a

rheumatologist until 2000, when I was also diagnosed (blood tests)

with rheumatoid arthritis. That same year (2000) I was also

diagnosed with COPD (chronic obstructive pulmonary disease) due to a

few bouts of undiagnosed pneumonia, so I have fairly severe lung

scarring.

Currently I am working but I have no medical coverage at all and

haven't had any for the last 3 years. So getting any treatment is a

huge problem for me. I also am not able to use any of the newer PA

or RA drugs as almost all of them (it seems) have either a risk of

infection or lung problems. Due to my COPD I have to be very

careful about any possible infections to my lungs.

I am hoping that through this group I may be able to find some

alternative treatments or advice for managing PA. Though I do have

breathing problems the PA is the more painful condition. Also the

most embarassing for me. My fingers and toes are all permanently

bent at odd angles and very painful. My fingernails and toenails

are all yellow, severely pitted and infected all of the time. I have

no cuticles left and the skin all around the nails looks like

regular psoriasis. I wear shoes that are two sizes too big because

of the way my toes are bent. The people where I work and out in the

world are always staring at my hands, I guess they are trying to

figure out if I have something contagious or something. (That's if

they're not staring at my regular psoriasis.)

I also have severe knee pain (both knees), shoulder pain (both

shoulders, I can't lift my arms) and neck pain. I don't know if the

knee and shoulder pain is more related to my PA or my RA. Right now

I can't afford more tests. So far, my spine doesn't seem to be

involved which I think is a good thing. Mornings are torture for

me, however.

In 2000 I was on Celebrex and methotrexate but it didn't help at

all. I've also been on Ultravate ointment for the regular psoriasis

but it hasn't helped very much except to soften it up some.

Any advice or suggestions are very welcome!

[Guest guest]

Hi peggy, just a humorous story. In the year between my amputations

('04-'05) I had to recertify for my disability. Now before it was my

arthritis and the osteoperosis that were the main force behind

getting my disability. Now to an uninformed burocrat, I can see the

need for proof, You know, in case I'm in remission or something. But

this was in between my amputations. I was missing a leg. They had

the... I can't even find a word for it... audacity, stupidity or

what? the asked if there was any chance of my disabilitygoing into

remission or something... Hmmm, I'm not sure I was going to be able

to grow a new leg. I can see a prosthetic helping, but remission, or

a cure...

I've been there too, and it is daunting, and rediculous at times. If

you ever need help, please let me know, I know a lot of tricks to

getting on SSI disability which comes with Medicare.

I'm there with ya...

>

> Hi Peggy,

>

> I read what you said and Im so sorry what has been happening to

you. I hope things will work out for you. Im in Canada and I have

heard how hard it is to go on disability what you have to go through

[Guest guest]

Dear Christie,

One of the best things I learned from this support group when I was first

diagnosed with liver disease was to purchase the Revised edition of Dr.

Palmer's guide to liver disease. You will find it very informative and very

easy to understand. Some of my family members also found it very helpfull.

Take Care,

Shirlee

[ ] New to the Group

I am new to the group.

My husband is very ill from liver disease.

He has many of the symptoms listed here on the site.

We have seen Dr's and have been given diagnoses,plans and alternative

plans for care, but the professionals are so used to seeing this, they

generalize their conversation because they believe the average person

will not fully understand.

I do, and I am doing research, but we are alone in this fight.

Our families are distant and afraid of the disease process.

The more informed I am, the better equipped I will be to help my

husband.

Thanks.

[Guest guest]

Peggy,

Yes, the imitation Croc shoes at Payless Shoes is around $14.00. Thank you for

you kind words too. It's something we can't enough of from friends and loved

ones. I think this chronic disease helps up stay focused and aware of what

others are going through.

Rhonda

[ ] Re: New to the group

Hello, Rhonda, and thank you for your thoughtful

post. We don't

have a Sam's Club close by but there is a BJ's (sort of the same

thing) not too far away. I'll have to check and see if they offer

any type of insurance. Where I am working they do offer medical

coverage but it about $90. a month and I just can't afford it.

Maybe BJ's will offer something much cheaper. I can check. I'll

also look into the Imitation Croc shoes at Payless. Do you know if

they are expensive? I am currently wearing shoes I got at the local

Target store, they are not good for my feet at all, but they were

all I could afford - they were marked down to $14.00. I've been

wearing them for 8 months so it is no wonder that my feet hurt me so

much, I guess.

I do understand that dealing with insurance and insurance people can

be very frustrating. You have my sympathy there. It's so hard to

get any kind of medical care without some sort of insurance though.

Try to hang in there with it. Keep trying to take one day at a

time. I'll be praying for you, believe me, without God I know I

wouldn't be making it through the day.

Peggy

[Guest guest]

Hi Christie,

Which type of liver disease does your husband have? Is it AIH? If so

there a lot of websites I can give you the links too.....

Just let me know

>

> Dear Christie,

>

> One of the best things I learned from this support group when I

was first diagnosed with liver disease was to purchase the Revised

edition of Dr. Palmer's guide to liver disease. You will

find it very informative and very easy to understand. Some of my

family members also found it very helpfull.

> Take Care,

> Shirlee

> [ ] New to the Group

>

>

> I am new to the group.

> My husband is very ill from liver disease.

> He has many of the symptoms listed here on the site.

> We have seen Dr's and have been given diagnoses,plans and

alternative

> plans for care, but the professionals are so used to seeing

this, they

> generalize their conversation because they believe the average

person

> will not fully understand.

> I do, and I am doing research, but we are alone in this fight.

> Our families are distant and afraid of the disease process.

> The more informed I am, the better equipped I will be to help my

> husband.

> Thanks.

>

>

>

>

>

>

[Guest guest]

Thank you Kathy F. I myself take fish oil omega 3, 6 and 9 as well as

Glucosimine along with my Enbrel and Plaquinel. I take Melatonin at night when I

have difficulty sleeping...usually due to pain. I give the fish oil to my

daughter because there are studies that show it to be helpful to concentration

levels in the mind. I take the supplements knowing that they may or may not help

and won't hurt if I follow the guidelines and don't over dose them. I am fully

aware of how supplements can be harmful to some people. I have an iron

metabolism disorder and if I take iron supplements I will be killing myself. If

I take vitamin C, I will be doing the same. C aids in the absorption of iron. If

I take mineral supplements, they aid in the absorption of iron as well. It is

important for all of us to be educated and cautious. My friend who is in a wheel

chair that presents the classic symptoms of PA went to see a doctor who ignored

the psoriasis on his hands...ignored the sausage

digits....ignored his debilitating pain (Bobby misses at least 4-6 days of work

on average each month due to pain that keeps him in bed). The doctor encouraged

Bobby to " just take supplements " until he can't stand the pain anymore. Bobby is

guzzling a popular health drink now made from a fruit from Korea. It's thirty

dollars a bottle and I doubt it will do what Enbrel might do. It breaks my heart

to see so many people mislead. I am glad that you are not afraid to tell us the

truth. Most of us have gotten the run around for years before we were properly

diagnosed. The truth is what we need now. I am unemployed and have had to depend

on help from strangers, the salvation army, my church, food stamps (which were

just discontinued because the state feels that I received enough gifts last

month to cover my expenses). I was turned down for disability but will reapply.

My daughter is still being considered. We both have medicaid or neither of us

would be able to afford

medication. would be in an institution without medication. I have read

the plights of people on here this week...much like my own. I have been too

embarrassed to say that the PA and 's issues are not the least of my

worries. Last week the phone was shut off and then turned back on and if the

salvation army had not stepped forward, my power would have been turned off too.

I have 1 dollar in my pocket and 4 in the bank until I work for my friend who

barely makes it to work himself sometimes. This disease HAS made me more

compassionate and I plan to fight it so that I can help others get help. I'm not

quiting just because the system makes it hard to keep going sometimes. I sat in

the Social Services building and watched well dressed abusers of the system come

in and take the money that many of us need. I thank God for what I was able to

get. I pray for Peggy and know what she is going through. As I find ways to help

myself get by financially I will share them

too. Someone suggested Catholic Services to me. In NY state, the Social

Services dept knows of grants that are available too...sometimes it's an

unclaimed inheritance that is managed by a board of trustees. You might have to

write a letter describing your situation but anything is worth a shot when you

just need a pair of shoes and a roof over your head. There are people who need a

live in caretaker too. As long as the person did not need to be lifted, that

might be a possibility for some.....maybe for Peggy. I have always been a

worker....always been very active so it's not easy to be reduced to this but I

am still me. Reeve was able to realize that and I am too. And I am

a stronger me than I ever thought I could be. I am wiser too and more determined

than ever now. I KNOW that good can come of anything. I've seen it and lived it.

If you believe it, it can happen. That's why I am able to encourage the others

who are struggling. We have to get our minds and

hearts in the right place first. Otherwise our bodies can't heal properly.

Peggy and the rest of you just getting by...don't give up. Picture yourself

doing better and be thankful for every little thing you have. And if that does

not work, be thankful for every little thing someone else has. There's something

healing about thankfulness. Should I say " Amen " now? lol. Kinda hard to know how

to wrap a post like this one up. How about a simple " goodnight " -Betz

Betsy Jack itsbetsy@...

[ ] New to the group I just found this group today and just

wanted to say hi and introduce myself a bit. I don't have a lot of time to be on

the computer but I'll try to contribute when I can. I've had psoriasis since I

was 12-years-old (I'm 50 now) and psoriatic arthritis since 1993 though it

wasn't diagnosed by a rheumatologist until 2000, when I was also diagnosed

(blood tests) with rheumatoid arthritis. That same year (2000) I was also

diagnosed with COPD (chronic obstructive pulmonary disease) due to a few bouts

of undiagnosed pneumonia, so I have fairly severe lung scarring. Currently I am

working but I have no medical coverage at all and haven't had any for the last 3

years. So getting any treatment is a huge problem for me. I also am not able to

use any of the newer PA or RA drugs as almost all of them (it seems) have either

a risk of infection or lung problems. Due to my COPD I have

to be very careful about any possible infections to my lungs. I am hoping that

through this group I may be able to find some alternative treatments or advice

for managing PA. Though I do have breathing problems the PA is the more painful

condition. Also the most embarassing for me. My fingers and toes are all

permanently bent at odd angles and very painful. My fingernails and toenails are

all yellow, severely pitted and infected all of the time. I have no cuticles

left and the skin all around the nails looks like regular psoriasis. I wear

shoes that are two sizes too big because of the way my toes are bent. The people

where I work and out in the world are always staring at my hands, I guess they

are trying to figure out if I have something contagious or something. (That's if

they're not staring at my regular psoriasis.) I also have severe knee pain (both

knees), shoulder pain (both shoulders, I can't lift my arms) and neck pain. I

don't know if the knee and shoulder pain

is more related to my PA or my RA. Right now I can't afford more tests. So far,

my spine doesn't seem to be involved which I think is a good thing. Mornings are

torture for me, however. In 2000 I was on Celebrex and methotrexate but it

didn't help at all. I've also been on Ultravate ointment for the regular

psoriasis but it hasn't helped very much except to soften it up some. Any advice

or suggestions are very welcome! [Non-text portions of this message have been

removed]

Betsy Jack itsbetsy@...

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

I also have a large freckle that has now started changing, and I have to have it

looked at. I hope this Metho didn't start anything going inside of

me....yikes...

Jeanette

[Guest guest]

In a message dated 18/06/2006 01:58:21 GMT Daylight Time,

summertyme1113@... writes:

I just found this group today and just wanted to say hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

Hi Peggy,

Welcome to the group. I'm glad you found us but sorry you had to. You have a

lot going on with you having PA and RA but on top of that having COPD too

which is limiting what you can take for the Arthritis.

I hope someone was able to give you some help and advice with regard to the

alternative treatments.

Just read your follow up mail. I was calling you summertyme up till then. lol

I'm sorry about your situation with regard to insurance. Its almost a Catch

22 situation with the disability people saying you need more in your medical

record but you can't afford to keep going to the doctor.

I hope the fact that you are in touch with people here who can understand at

least part of what you are going through helps you in some way.

Has there been any improvement in your situation since last month. I really

hope something good has happened for you.

Take care,

Good luck,

[Guest guest]

I just found this group today and just wanted to say hi and

introduce myself a bit. I don't have a lot of time to be on the

computer but I'll try to contribute when I can.

Hi Peggy,

Welcome to the group... I found it two days I think ago and they are a nice

bunch of people... I am enjoying talking about all the stuff I never really knew

even thou I have been diagnosed since 2001-2... Cant remember the exact year...

Brain fart... lol... I hope you enjoy it too, its been fun reading all the

emails and replies... Hope to get to know you here on the boards... I am usually

pretty open and honest about everything so I may be abrupt, but I mean well

lol...

Love and Peace Always

Shaun and Barb

[Guest guest]

ever get your nail done at a salon thats how i think i contracted mine

>From: TINA TOBIAS <tinatobias1019@...>

>Reply-

>

>Subject: Re: [ ] New to the group

>Date: Tue, 1 Aug 2006 12:37:20 -0700 (PDT)

>

>just to let you know, this virus can lay dornmant in your body for over 20

>years. i know. twenty five years ago i was an iv drug user. i never

>shared needles because i'm diabetic. but still, i put down the drugs when

>a friend od. i've never touched the crap again. but 6 months ago i gave

>blood and found out the news. i had given blood before and it never showed

>it's ugly head until now. the doctor told me that all the stressed i have

>been going throught this last year has brought it to the surface. i don't

>know what's in store for me either. i made a mistake years ago when i was

>young, stupid and foolish and will now pay the price. i also have manic

>depression bipolar disorder and have been told that the medications will

>not be good for me. i had to stop taking the depression medication because

>that was affecting my liver. what to do i have no idea. god bless you and

>good luck. so far i have had none.

>

> tina nelson

> san diego california

>

>sulrich20_2004 <sulrich20@...> wrote:

> Hello everyone,

>

>I am new here to your group and hope to find some answers. I have

>just found out 4 days ago that I tested positive for the HEP C anti-

>body. Have to go to a specialist on the 9th for further blood work. I

>have been married to the same man for 20 years - never strayed outside

>the marriage. My husband got his test back and it is negitive. How

>can this be? How could I have picked up the virus. I have read alot

>of information on the web and all the ways they say you pick up the

>virus DO NOT apply to me. I have never shared needles, never had blood

>transfusions, never been a health care worker. NOTHING. I am very

>scared right now as I have no idea what lays ahead for me.

>

>Could someone please help to understand how this happened and what I

>can expect from here.

>

>Thank you

>Sherry

>

>

>

>

>

>

>

> " PEACE OUT "

>

>---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

>countries) for 2¢/min or less.

><< Picture306.jpg >>