Re: The Appointment

[Guest guest]

Dear Patti,

I hardly ever look at the Profiles so I didn't see your posting

there. Posting to the site (as you just did) works best.

I don't have personal experience on the wound healing...neither

with wounds or meds. We have some Files and Links on the site you

may be interested. And hopefully the members who have wounds related

to their EN or PG will see your post and respond with their

experiences. At least the wounds are healing. From all I've read it

is a slow process. So keep up your spirits!

Although it does look like I respond to all posts, I try to keep

from hogging the board to give others (especially those who have

personal experience on a matter) a chance. Beleive me, there is

plenty I don't know and I defer to others.

I am disgusted that they have a drug they want to try and are

limited by the insurance or lack of it. Different states have

different assistance levels. I am not sure I remember your state--AZ?

AZ. is not as generous as other states. My girlfriend couldn't

qualify there because a few extra dollars she was getting from

disability took her over their limit. She moved to WA and gets some

extra assistance now.

Social Security I know about since I worked for them for 10

years, but that was 25 years ago, and I know there have been changes.

You made your application, right? You should hear from them by

60 days--but no news is good news as they didn't give you a fast

denial. File the " Reconsideration " if you are denied on the first

try. It will help if you have additional info to add or a new

doctor's report to have them look at.

I wish I could be of more help!

Have a happy Weekend, Patti and Group!

Love,

[Guest guest]

Yes,when it dawned on me what I did...I thought " You ditz " . I was

just thinking about all of this, spaced out and took the wrong rode.

And, your right....it is nice...WONDERFUL to know a place to go to

share your experience and express feelings...knowing there are

people that CARE for you, having the desire to give thier SUPPORT.

It has been a added strentgh, where there has been none, finding

this Group. Maybe, I have not expressed it or possibly misunderstood

but I am VERY APPRECIATIVE and must Thank You ...again for creating

this for me and All. You mention the " Files/Links " and I bet I have

looked thru most a dozen times. It has not only enhanced my

knowledge but my Family and Good Friends as well. It has given them

a greater understanding to what is happening to me but how they can

be a support and help. When my daughter was here (Arizona) it scared

her. She told me that I had explained it well but seeing it scared

her Now that she has received some of the info from here, it has

helped. Also, as you said, when the Creatures are crawling there are

people here that " Hopefully " will share thier experiences. It is

like a continuous search, it seems like. ~*~ Yes, your right, I am

in Arizona, Tucson. From what I hear, their medical program is

great, the Dr's have made commment to how good it is. When I first

moved here...gads (lol) I went to ER. Major Crohns episode plus the

EN was creeping around. Some Rep. from Human Resources, I

guess...came in and ask me alot of questions. I don't recall much

but Ana, my friend answered most. I was in PAIN...and the Morphine

was taking affect. Anywa, when I saw the Dr. after that, she told me

I had received this aassitance. Ok..whatever. It lasted a year and I

was given the Royal Treatment. I think that is alot of why I wasn't

sent to the hospital with my legs...having on the L-19 and R-

12...when I had ONE before, it looked almost exactly like 's.

....so now, I applied for the Medical Asst. and received a letter

from Social Security to come in, info'd me they would asst. me with

filling it out and would date it back to the time I first came in

and filled out that little request thing they had. I know I can't

work anymore, especially with my profession. Thru The Journey of

Application Vacation I will keep you posted, well I mean if you

don't mind? ANd, ...you have been help to me since my first

day here. You say there is alot you don't know...well Ok..but this

is true for many. BUT!!!...What you DO know, is how to put people

together to locate the answers...if there is something you're not

sure of, you know where to direct...and what I have seen, if you see

a disease,product,procedure>============zoom==============> your off

to find out ALL you can and bring it back to share. I would consider

that a KNOW....=0) Till the next post...~P~

erythema_nodosum_Group , " Strecker "

<rebeccastrecker@y...> wrote:

> Dear Patti,

> I hardly ever look at the Profiles so I didn't see your

posting

> there. Posting to the site (as you just did) works best.

> I don't have personal experience on the wound

healing...neither

> with wounds or meds. We have some Files and Links on the site you

> may be interested. And hopefully the members who have wounds

related

> to their EN or PG will see your post and respond with their

> experiences. At least the wounds are healing. From all I've read

it

> is a slow process. So keep up your spirits!

> Although it does look like I respond to all posts, I try to

keep

> from hogging the board to give others (especially those who have

> personal experience on a matter) a chance. Beleive me, there is

> plenty I don't know and I defer to others.

> I am disgusted that they have a drug they want to try and are

> limited by the insurance or lack of it. Different states have

> different assistance levels. I am not sure I remember your state--

AZ?

> AZ. is not as generous as other states. My girlfriend couldn't

> qualify there because a few extra dollars she was getting from

> disability took her over their limit. She moved to WA and gets

some

> extra assistance now.

> Social Security I know about since I worked for them for 10

> years, but that was 25 years ago, and I know there have been

changes.

> You made your application, right? You should hear from them

by

> 60 days--but no news is good news as they didn't give you a fast

> denial. File the " Reconsideration " if you are denied on the first

> try. It will help if you have additional info to add or a new

> doctor's report to have them look at.

> I wish I could be of more help!

> Have a happy Weekend, Patti and Group!

> Love,

>

[Guest guest]

P.S. I forgot to add this...Again where it was open the skin

feels real thick, like there is a piece of boot leather under the

skin. Does anyone know...does this stay or eventually soften? THX

> > Dear Patti,

> > I hardly ever look at the Profiles so I didn't see your

> posting

> > there. Posting to the site (as you just did) works best.

> > I don't have personal experience on the wound

> healing...neither

> > with wounds or meds. We have some Files and Links on the site

you

> > may be interested. And hopefully the members who have wounds

> related

> > to their EN or PG will see your post and respond with their

> > experiences. At least the wounds are healing. From all I've read

> it

> > is a slow process. So keep up your spirits!

> > Although it does look like I respond to all posts, I try to

> keep

> > from hogging the board to give others (especially those who have

> > personal experience on a matter) a chance. Beleive me, there is

> > plenty I don't know and I defer to others.

> > I am disgusted that they have a drug they want to try and

are

> > limited by the insurance or lack of it. Different states have

> > different assistance levels. I am not sure I remember your state-

-

> AZ?

> > AZ. is not as generous as other states. My girlfriend couldn't

> > qualify there because a few extra dollars she was getting from

> > disability took her over their limit. She moved to WA and gets

> some

> > extra assistance now.

> > Social Security I know about since I worked for them for 10

> > years, but that was 25 years ago, and I know there have been

> changes.

> > You made your application, right? You should hear from them

> by

> > 60 days--but no news is good news as they didn't give you a fast

> > denial. File the " Reconsideration " if you are denied on the

first

> > try. It will help if you have additional info to add or a new

> > doctor's report to have them look at.

> > I wish I could be of more help!

> > Have a happy Weekend, Patti and Group!

> > Love,

> >

[Guest guest]

Dear Patti,

Thanks for those kind words! To get all this appreciation from

so many is just wonderful!

I know you are in pain, so can understand you said " " when

you meant our member " Jeff " --close enough we know who you

meant...there is only one member who posted PG photos...our Jeff.

You are right on target with the Social Security Application.

Glad they are still doing the " retroactive " dating of the

applications. Get that appl. done asap. They try to get all

appliations processed within 30 days--out of the branch office and

onto the next level--and they lose credit for each day late. With a

retroactive date they are losing time before you even sign it. They

used to send a worker to the house if you couldn't come into the

office--my Hubby, Steve, did that sort of work--visiting the disabled

applicants and filling out the paperwork. He also did public

relations talks for Soc. Sec. Got to the point where he felt ashamed

to represent SSA. He quit shortly after I did...I quit after I had a

bout of EN like I never had before along with 18 days of high fever

followed by 3 months of drenching night sweats. Never did find out

what I had but it never came back....that was back in '79.

Don't know about the " boot leather " type skin, but maybe that is

how PG heals. PG is so much more serious than EN and Jeff's photos

show how much the skin goes through before it heals.

Take care of yourself, Patti! If you can't get to the SSA office

ask if they can send a " field representative " to your home. An office

visit can take hours of waiting in the waiting room. Try to avoid

that if you can.

Love,

[Guest guest]

Oh...Gosh =-s <--Sorry " JEFF " ....got The " J " right, (lol)

Seriously, I do aplogize...

> Dear Patti,

> Thanks for those kind words! To get all this appreciation

from

> so many is just wonderful!

> I know you are in pain, so can understand you said " "

when

> you meant our member " Jeff " --close enough we know who you

> meant...there is only one member who posted PG photos...our Jeff.

> You are right on target with the Social Security Application.

> Glad they are still doing the " retroactive " dating of the

> applications. Get that appl. done asap. They try to get all

> appliations processed within 30 days--out of the branch office and

> onto the next level--and they lose credit for each day late. With

a

> retroactive date they are losing time before you even sign it.

They

> used to send a worker to the house if you couldn't come into the

> office--my Hubby, Steve, did that sort of work--visiting the

disabled

> applicants and filling out the paperwork. He also did public

> relations talks for Soc. Sec. Got to the point where he felt

ashamed

> to represent SSA. He quit shortly after I did...I quit after I had

a

> bout of EN like I never had before along with 18 days of high

fever

> followed by 3 months of drenching night sweats. Never did find out

> what I had but it never came back....that was back in '79.

> Don't know about the " boot leather " type skin, but maybe that

is

> how PG heals. PG is so much more serious than EN and Jeff's photos

> show how much the skin goes through before it heals.

> Take care of yourself, Patti! If you can't get to the SSA

office

> ask if they can send a " field representative " to your home. An

office

> visit can take hours of waiting in the waiting room. Try to avoid

> that if you can.

> Love,

>