Qscholar ...

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Qscholar, Thanks for the information that you have provided me with. I am seriously thinking about checking out that medicine program because they are charging an arm and a leg for meds now a days. With you saying that since the attorney's already taken my case gives me hope that I have a good chance of winning. I hope that I do because I need some source of income. I truly cannot work and am really sick. I will be sure to check out the websites that you've given me the links to. I'm glad that you listened to me vent. I've been having a really hard time lately and have been trying to hold it in. How do you go about letting African Americans know about Lupus? Is there anything I can do to help promote this also? Thanks again for everything. -. -- Re: Too Much Soup And Sandwich (Venting -- Big Time) Dear Lupie Members, I filed for social security last September. They denied me last month. I got a letter from an attorney saying that they would take my case. My grandmother said that they usually don't take any cases until you've been denied two times. Hi , I don't usually post much because I am still in the learning process and the information here is so wonderful. In regards to your social security case, I live in Michigan and don't know what the Attorney policies are in your state so I can be totally wrong with what I am about to say, so don't accept it as etched in stone. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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In LUPIES , " fiushamirage@a... " <FiushaMirage@a...>

wrote:

Qscholar,

Thanks for the information that you have provided me with. I am

seriously thinking about checking out that medicine program because

they are charging an arm and a leg for meds now a days. With you

saying that since the attorney's already taken my case gives me hope

that I have a good chance of winning. I hope that I do because I need

some source of income. I truly cannot work and am really sick.

Hello again , I know exactly how you feel. I still remember

the stress that I was under wondering if I would win my case. Just

stay on top of things and request copies of every bit of information

that is available about your illness and log EVERYTHING. Organize

your past questionaires from SS. You may (like me) be asked to go for

another psychological exam. Your Attorney may also tell you to make

sure that you are seeing a Psychiatrist. Doing that will also will

help to win your appeal. Do everything the Attorney asks.

How do you go about letting African Americans know about Lupus? Is

there anything I can do to help promote this also? Thanks again for

everything.

-.

Well, to answer your question I must start at the beginning by

telling you how it all began.

When I had my free counseling with the Lupus Alliance counselor.

(This is kind of long so please bear with me) I had so many issues

that I needed mentoring with that she gave me the number of another

African American lady with lupus that lives in my city. It's weird

because I could never locate this woman because she had moved and

changed telephone numbers. We finally connected a year and a half

later by chance when she in conjunction with the Lupus Alliance

started a support group.

I was at the store and saw a flyer announcing the group. Her name was

on the flyer and I immediately called her, thus she was found. Her

goal is to promote lupus awareness in general. She asked me to co-

facilitate her group and together we have been able to get a

newspaper interview promoting awareness. We had a full spread. Our

local group consists of individuals from many different ethnicities.

The reason and how I became committed to promoting awareness with

African Americans is that I know of at least 5 individuals who have

lupus and has not attempted do anything about it. I have invited them

to the support group only to hear excuses such as I am not interested

to God has healed me, so I no longer " claim lupus " .

One young man that I know is in the hospital more than he is out. He

is on dialysis every other day and in my city dialysis patients are

treated like workers in a factory. The time that they must receive

dialysis is determined by senority. This man is low on the totem poll

and must be at dialysis no later than 5:00 am. He also suffers from

chronic fatigue and a bad heart and it is literally killing him. I

have begged him to allow me to at least share information with him

knowing that he is too weak to attend our meetings. I have offered

him books, literature, etc. He refuses to accept any of it, so I have

moved on.

A year ago I started an online group and it failed miserably. No one

joined. This past January I ventured out again and 3 people joined

but no one posted but me. We were named the brown butterflies. I then

began an overhaul of the group and began to add information and I

changed the name and looked up African Americans with lupus in yahoo

members directory. I also began to post awareness letters in African

American groups and message boards. I got banned from many groups as

a result.

The work payed off because we are now up to 27 members. All of the

members are not African American, but everone is welcome. The support

is great and we are now active discussing issues that affect us. Our

top issues are family support and employment issues. I have one 21

yr. old member that has no family support whatsoever, so I would like

to set up a mentorship with her. Another member had to send her child

to live with the Father in another state due to her recent flare.

Then most of them work because they have to. Some were unaware of the

disability process and how to go about applying for what they are

entitled to because they are constantly having their jobs threatened

due to missing so much time.

I was able to recently be added to a webring, and one of the CEO's

from the Lupus Alliance has joined the group so that he can rate the

group and approach the board of directors about allowing him to add

our group to the links section of their web page.

10 years ago, a cousin of mine passed away from lupus. She was always

attempting to promote awareness to all of us. I am ashamed to admit

that I didn't listen much. Had I known what the future held for me I

would have. Most of what I am doing now is in dedication to her

because I am certain that if internet was around when she was alive

she would have been doing more than what I am trying to accomplish.

We are number 3 in the world in regards to lupus onset. I have read

that Indian/Asians are #1 and Hispanics are #2 but we are #1 in

regards to lupus related deaths. I guess I am venting now (smile:)

but one more point and then I will stop rambling.

Another thing that I noticed was that online I wasn't able to find

any African American webpages or groups regarding lupus. There may be

some out there I just haven't found them yet. I did however find that

some A/A organizations were promoting lupus by having fundraisers

etc. maybe once a year but that is different from committing to a 365

day a year database. I am not trying to sound cynical, but each group

that I come across with the word " booty " in the title generates

thousands of members. I even saw a group that had over 1 million

members. I almost named the group booty lupus just to get some

attention. Sorry if I sound bad, but I just believe in speaking the

truth about some of the issues as it relates to some of my people and

some of all people in general.

My Brother is a Mortician. Each year he sponsors a back to school

gathering in our community for children and their parents. He has

guest speakers and a health fair. Individuals must register months in

advance for a booth or to be on program. I am pleased that he has

guranteed our local support group a booth for this years event. The

Alliance will be sending me all of the literature that I will need to

distribute. It takes a lot of hard work to promote awareness but this

is what keeps me going.

So you ask how can you help to promote lupus awareness with African

Americans? That's easy, continue doing what you have just done. Reach

out to everyone that has lupus no matter the ethnicity because it is

one of the many illnesses that brings everyone to the realization

that contrary to many of our social beliefs no one is really any

different from anyone else. You may someday meet an African American

with lupus. If the timing is right, strike up a conversation and you

will soon be able to determine just how involved and knowledgable the

person is. That is if the person is friendly. If the person seems to

be interested in what you are saying, go for it like I do and bombard

em with your information. hehehehe

Don't forget to follow up with the Medicine program all of the meds

that we are prescribed are available, so there is no doubt that you

should qualify. This will ease much of your current burden and stress.

qscholar