Re: not working

March 3, 2001

,

I think it's disgusting that you're stuck with a family member who

shows such little support. Sounds to me like you'd probably be better

off on your own. Sometimes I think having our own communities would

be a good thing because at least then, the others like ourselves

would have knowledge of what we're going through.

As for going out to pay bills and buy groceries, I'm not sure why

that's necessary. I usually pay bills by mail, and although I haven't

yet ordered anything from WebVan or the various Web Grocers available

via the internet, from what I've seen their prices aren't much higher

than the supermarkets. I'm not saying that becoming a hermit would be

a good thing necessarily, but it's much more possible nowadays than

in the past. In fact, I generally order things over the internet just

for conveniences sake, and usually get better prices that way too.

Government disability and other social support programs are intended

specifically for people in your situation and you should have taken

advantage of them long ago. For starters, you might check the Social

Security Administration Disability web page at

http://www.ssa.gov/disability/

Also, you should subscribe to the Group " Disinissues-L " at

Disinissues-L

They are a very active group that discusses the in's and out's of the

macabre government disability programs. I suggest you either

subscribe via the " Web Only " or " Daily Digest " options, otherwise

your e-mail box will be flooded with e-mails.

Just remember that our situations and outlook on life has " flares "

just like this disease does, and don't ever forget that there WILL be

better times ahead. Spring is just around the corner.

Best wishes and happiness to you,

-- Ron

> I had a nasty fight with a family member yesterday and felt there

> was nowhere else to go with this.

March 3, 2001

Hi ,

Have you tried any medications? I went on mtx about 3 months ago. I have p

on my scalp and the mtx has gotten rid of most of it. I only have a little

at the base of my hairline. I too had pain in my neck, which I'm not sure is

PA or computer related since I'm on the computer at work for 7 hrs. a day.

My neck feels almost like normal with the help of my chiropractor and mtx.

I've read alot of postings where people have written that the mtx gets rid of

p on their bodies. I am very fortunate that I only have very little p on my

scalp. If you're not on any medication for p or pa, you may want to consider

it. Good luck and I hope you find some relief.

Edie

March 3, 2001

-

Hang in there! While I wish I had solid advice, you are doing the right

thing by talking about this with those that understand. do what YOU feel is

right with your life and work. Good luck

[ ] Not Working

> I had a nasty fight with a family member yesterday and felt there was

> nowhere else to go with this.

>

> I have not worked for a year. I write two columns that are published

> online, run a small beadwork business, and webmaster. I do all of

> this, however, at home. I go out to do food shopping once a week.

>

> I have had reasonable luck with controlling the PA but this winter it

> is bad-- very bad. My skin looks so terrible I can't go out without

> being questioned. I'm 35, have had the disease since I was around 2

> or 3, and have only this year lost the battle to keep it off my

> face. My hands fell a few years ago, so I really can't hide the

> disease.

>

> The biggest problems is the bleeding-- I never know when my hands or

> arms, legs, or the spot above my eye, are going to start bleeding.

> In this world of ultra-contamination-sensitivity a woman with open

> bloody sores is no welcome visage.

>

> The OTHER problems is neck pain and lethargy. My head and neck hurt

> all the time. Nothing seems to help. I have had luck in the past

> but this winter-- I am a slave to the disease.

>

> I feel useless because I am not bringing in more, doing more. When

> I didn't want to go out to pay a bill yesterday a huge tirade ensued

> about me " needing to do something about it. " (I hate it when I

> misplace that magic wand!!!)

>

> I hurt all the time and can't get up in the morning. Lately my mind--

> which was always my strength-- is getting slower and I'm forgetting

> more often than I ever have. I wonder-- where I have not worked in a

> year-- if it is even possible to go on some kind of government

> disability just so my family will have a check coming in.

>

> Sigh. Thanks for listening, I don't indulge often. :[

>

March 3, 2001

In a message dated 3/3/2001 4:57:03 AM Eastern Standard Time, inkywings@... writes:

I had a nasty fight with a family member yesterday and felt there was nowhere else to go with this.

Oh - I hope today was a better day for you. I don't have the P except one small spot so I can only imagine what you are going through - it sounds just awful. I really feel for you.

All I can tell you is that all of us are here when you need to vent, and don't let anyone try to pressure you into doing more. As we all know, stress is the worst factor in this condition for flare ups. (You might try telling the family that)

Hang in there - it's gotta get better soon!!!

March 3, 2001

Jim,

I think you misconstrued my statement. In no way was I advocating

that we should be FORCED into " Leper " like colonies; however, I

personally would PREFER to live in such colonies for P and PA

sufferers if such a community existed, and I don't care whether it

makes disability advocates cringe or not. The bad thing about the

Leper colonies was that they were deprived of most of the creature

comforts of the time, and I'm assuming such wouldn't be the case

today.

I personally quit going to public pools because I got tired of the

stares. If we with P and PA had our own community, I wouldn't have to

worry about it. Each person's threshold of feeling rejected varies,

and those who are able to ignore the ignorant and continue to do

things they enjoy in public have my congratulations and support. I

realize we " shouldn't " have to feel excluded, but I'm a realist -

some of us do feel excluded. By the way, 's signature lines

had a link for a site about P called " Flake HQ " that has a great page

called " Don't Say This! " that is both funny and sad at the same time.

The page is at: http://www.flakehq.com/dont.htm

It's funny you should mention Leprosy. Several years ago I went to a

rheumatologist who thought there might be some commonality between

Psoriasis and Leprosy, and as part of a research study he asked some

of his patients to voluntarily try a drug for Leprosy. I forget now

what it was called, but it was a capsule containing a special type of

red dye. On the one hand, I was disappointed that it didn't work, but

on the other I was somewhat relieved, because I suppose that means P

isn't related to Leprosy.

Please note that these are only my personal opinions as a P and PA

sufferer. I don't expect everyone to feel the same, and I certainly

don't mean to offend anyone.

-- Ron

>

> << ....Sometimes I think having our own communities would be a good

> thing because at least then, the others like ourselves would have

> knowledge of what we're going through.... >>

>

> It's comments like this that make disability advocates cringe. We

> should NOT have to, or want to divide into groups as the Lepers did

> 2000 years ago. Maybe that's an extreme example, but no one should

> ever feel so excluded that they can't participate with the rest of

> society.

>

> It is still possible to have great personal pride in yourself no

> matter what your physical condition. Forgive the ignorance of the

> people who don't understand. Don't ever be ashamed of being human

> and don't ever give up your spirit to live voluntarily.

>

> Sorry for the rant. Jim

March 4, 2001

I too have P about 70 to 80 percent of my body. It's not too bad right now

as I had to go for treatments (inpatient). This isn't done as much anymore

but when you have this much coverage and it a big time flare you loose body

fluids. I find that when the P is not flaring I can then have the strength

to handle the PA a little better.

I love your site :http://www.flakehq.com/dont.htm

It reminded me of when the little neighbor boy was over playing with my

granddaughter (both age 5 at the time) and they came into the room while I

was on the computer and the little one said " Oh, ohhhhh look someone's been

eating potato chips and got them all over. "

You mentioned that you don't go out because of the P. I know what

it is like but remember you are important and you are a good person and you

have just as much right being out as the next person. Yes, I, too, get tired

of explaining. Sometimes I will explain and other times I will ignore.

Sometimes I cover up as best as I can and other times I say the heck with it.

It all depends on my mood. I do try to keep lubricated to try and control

the flaking. It is a big job and it takes a lot of time and energy. I just

hate it when someone says " again-----can't they do anything for that? " Lord

only knows what we've tried and are still trying. I just wish people would

look a little deeper and see we are human beings too.

I don't know you but by what I've read you are a special and

talented person. Maybe sit down and write all the things that's happened and

collect what you can and see about disability so you would at least have

something coming in. In the mean time hang in there maybe someone else has

some ideas for you.

Take care,

Nanny

March 4, 2001

Very sound advice, Ron!!

> > I had a nasty fight with a family member yesterday and felt there

> > was nowhere else to go with this.

March 22, 2005

Oh, Tess!! I am sooo sorry for you. The hospital doesn't have

anything else for you?!?! It's too bad about the hours. My shift

was changed a few months back to 11am to 730pm. At first I didn't

like it, but now that I have some control over my RA it isn't so

bad. I really hope you find something...Marina

> Hi Friends...well, I found out that my hours were going to be

11:30pm -

> 7am. I cannot do that on any regular basis. The sleep issues with

FMS

> and RA have long been a problem for me, and it has only been in

the past

> year or so that I have made great progress on acheiving a healthy

sleep

> schedule. So, I'm off on a new adventure of probably some classes

to

> sharpen up my skills, then finding another job. The health

organization

> I worked for briefly is a great place to work, and under different

> circumstances I would love to work for them. However, the job was

> portrayed as working a variety of shifts, and had it been

described as

> all nightime shifts, I would have had to decline before I tried.

So,

> onward & onward.

>

> Love...

>

> Tess

March 22, 2005

Oh, Tess!! I am sooo sorry for you. The hospital doesn't have

anything else for you?!?! It's too bad about the hours. My shift

was changed a few months back to 11am to 730pm. At first I didn't

like it, but now that I have some control over my RA it isn't so

bad. I really hope you find something...Marina

> Hi Friends...well, I found out that my hours were going to be

11:30pm -

> 7am. I cannot do that on any regular basis. The sleep issues with

FMS

> and RA have long been a problem for me, and it has only been in

the past

> year or so that I have made great progress on acheiving a healthy

sleep

> schedule. So, I'm off on a new adventure of probably some classes

to

> sharpen up my skills, then finding another job. The health

organization

> I worked for briefly is a great place to work, and under different

> circumstances I would love to work for them. However, the job was

> portrayed as working a variety of shifts, and had it been

described as

> all nightime shifts, I would have had to decline before I tried.

So,

> onward & onward.

>

> Love...

>

> Tess

March 23, 2005

Tess,

I'm so sorry the job didn't work out. But, you will find something

that is right for you. I will be praying for you sis, Tawny

> Hi Friends...well, I found out that my hours were going to be

11:30pm -

> 7am. I cannot do that on any regular basis. The sleep issues with

FMS

> and RA have long been a problem for me, and it has only been in the

past

> year or so that I have made great progress on acheiving a healthy

sleep

> schedule. So, I'm off on a new adventure of probably some classes

to

> sharpen up my skills, then finding another job. The health

organization

> I worked for briefly is a great place to work, and under different

> circumstances I would love to work for them. However, the job was

> portrayed as working a variety of shifts, and had it been described

as

> all nightime shifts, I would have had to decline before I tried.

So,

> onward & onward.

>

> Love...

>

> Tess

March 23, 2005

Tess,

I'm so sorry the job didn't work out. But, you will find something

that is right for you. I will be praying for you sis, Tawny

> Hi Friends...well, I found out that my hours were going to be

11:30pm -

> 7am. I cannot do that on any regular basis. The sleep issues with

FMS

> and RA have long been a problem for me, and it has only been in the

past

> year or so that I have made great progress on acheiving a healthy

sleep

> schedule. So, I'm off on a new adventure of probably some classes

to

> sharpen up my skills, then finding another job. The health

organization

> I worked for briefly is a great place to work, and under different

> circumstances I would love to work for them. However, the job was

> portrayed as working a variety of shifts, and had it been described

as

> all nightime shifts, I would have had to decline before I tried.

So,

> onward & onward.

>

> Love...

>

> Tess

March 23, 2005

Dear Tess,

I don't blame you--at this stage of life, trying to adjust to a late

shift like that would not be my choice either! But you have crossed

quite a bridge, and I'm sure that the idea of taking classes is a

good one--give you more of a chance to see what you would like to do,

what you can do, and what is available. At least you know you are

employable!

Good luck,

Judi

March 23, 2005

Dear Tess,

I don't blame you--at this stage of life, trying to adjust to a late

shift like that would not be my choice either! But you have crossed

quite a bridge, and I'm sure that the idea of taking classes is a

good one--give you more of a chance to see what you would like to do,

what you can do, and what is available. At least you know you are

employable!

Good luck,

Judi

March 31, 2007

Maybe if you put it in your dry'n'store and leave it for at least 24 hours it

might be okay. I

don't know for sure, but it's worth a try. A few times when my hearing aid got

wet while

the hair stylist was coloring my hair (I know, I know, but this happened almost

40 years

ago), I placed the aid in a warm spot and hoped for the best. It did " repair "

itself.

>

> Well Friday turned out to be one of the worst days in a long time.. For some

stupid

reason I had my processor on when I went in to take a shower.. I did remove the

body part

and the headpiece and placed in on the stand in the bathroom.. BUT after taking

a shower

I put it on and the headpiece is not working.. Could I have ruined it by having

it in the

bathroom while I showered.. This is the first time I have ever left it in the

bathroom while I

showered and there is a lot of humidity buildup while showering.. I am so mad at

myself

for not remembering to get it out before I showered.. I have to contact my Audi

Monday

and find out what will happen.. Any ever have this happen before??? Help

please..

> Much thanks

>

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

> Need Mail bonding?

> Go to the Q & A for great tips from Answers users.

>

March 31, 2007

, I doubt there is anything that would be permanently harmed. Give it a

chance to dry out, and my guess is that it will be working again in the

morning.

About 10 years ago I left my hearing aid in a pants pocket, and it went into

the washing machine. It went thru the whole cycle, soap, rinse and all. The

next day it was working fine.

Ralph

CII 8/01

HiRes 2/03

> Well Friday turned out to be one of the worst days in a long time.. For

> some stupid reason I had my processor on when I went in to take a shower..

> I did remove the body part and the headpiece and placed in on the stand in

> the bathroom.. BUT after taking a shower I put it on and the headpiece is

> not working.. Could I have ruined it by having it in the bathroom while I

> showered.. This is the first time I have ever left it in the bathroom

> while I showered and there is a lot of humidity buildup while showering..

> I am so mad at myself for not remembering to get it out before I

> showered.. I have to contact my Audi Monday and find out what will

> happen.. Any ever have this happen before??? Help please..

> Much thanks

>

March 31, 2007

Thanks Ralph I was hoping and thinking the same... I place it in the dry and

store case.. But I could not tell if the crystals were green or yellow so I

followed the instructions to bake it and the color did change much.. so hoping

that I did it right as this was the first time I have used this...

Again thanks for your help

Ralph Chiaradia <ralph.chiaradia@...> wrote:

, I doubt there is anything that would be permanently harmed.

Give it a