Lupus Support - Suggestions? Please!!!

Author

Suggestions? Please!!!

Muirenn

2004-12-31, 7:17 pm

Hi all,

Happy new year.

I am in a bad flare and I hurt so much. The weather is crazy and I am
trying to potty train my 3 year old son. My husband has ADHD and so has no
memory to speak of. He gets so upset when I forget things. I try so hard.
It drives me crazy. I used to be an accounting clerk. I had most of my 300
customers names addresses and phone numbers memorized. Now If I don't write
it down I forget.

My husband has always depended on me to keep the wheel oiled and keep the
house running smoothly, now I have trouble getting dressed some days. The
pain is so bad.

I am at a loss of what to do. Some days I am ok others I just want to cry.
I am fighting to get disability. We are broke. I used to be the big bread
winner. I have the better skill set.

My husband is a artist. He is a writer. He has writes scripts but getting
someone to buy them is a chore we have not yet accomplished.

I am so sorry for my rant, but I am so lost. My effexor is not even working
to keep the depression away anymore.

I just don't know what to do anymore.

Thanks for letting me vent

As always
Muirenn

2004-12-31, 7:17 pm

Muirenn wrote:

> I am in a bad flare and I hurt so much. The weather is crazy and I am
> trying to potty train my 3 year old son. My husband has ADHD and so has no
> memory to speak of. He gets so upset when I forget things. I try so hard.
> It drives me crazy. I used to be an accounting clerk. I had most of my 300
> customers names addresses and phone numbers memorized. Now If I don't write
> it down I forget.
>
> My husband has always depended on me to keep the wheel oiled and keep the
> house running smoothly, now I have trouble getting dressed some days. The
> pain is so bad.
>
> I am at a loss of what to do. Some days I am ok others I just want to cry.
> I am fighting to get disability. We are broke. I used to be the big bread
> winner. I have the better skill set.
>
> My husband is a artist. He is a writer. He has writes scripts but getting
> someone to buy them is a chore we have not yet accomplished.

Muireen, Happy new year to you too.
Tell your husband "staving artist" jobs only work well for those who have money
or are bachelors.
He has a child and a wife with a chronic illness. Time to get a real job and od
the "starving artist thing" in his free time.
Ask your family and/or his family to support you on this.
Hugs and IMO
J

Michael Roeper

2005-01-02, 2:08 am

I can offer some guidance about getting the SS disability. I'm in the middle
of a big flare right now too so can't do it now but if you want to e-mail me
off-group, I'll tell you what I learned after 3 years of fighting (and
finally winning big-time).

I know...the whole thing sucks right now, huh?

Roeper@comacast.net

"Muirenn" <someone@somedomain.cam> wrote in message
news:10tb5d3psfa0sf5@corp.supernews.com...
> Hi all,
>
> Happy new year.
>
> I am in a bad flare and I hurt so much. The weather is crazy and I am
> trying to potty train my 3 year old son. My husband has ADHD and so has
no
> memory to speak of. He gets so upset when I forget things. I try so
hard.
> It drives me crazy. I used to be an accounting clerk. I had most of my
300
> customers names addresses and phone numbers memorized. Now If I don't
write
> it down I forget.
>
> My husband has always depended on me to keep the wheel oiled and keep the
> house running smoothly, now I have trouble getting dressed some days. The
> pain is so bad.
>
> I am at a loss of what to do. Some days I am ok others I just want to
cry.
> I am fighting to get disability. We are broke. I used to be the big
bread
> winner. I have the better skill set.
>
> My husband is a artist. He is a writer. He has writes scripts but
getting
> someone to buy them is a chore we have not yet accomplished.
>
>
> I am so sorry for my rant, but I am so lost. My effexor is not even
working
> to keep the depression away anymore.
>
> I just don't know what to do anymore.
>
>
> Thanks for letting me vent
>
>
> As always
> Muirenn
>
>

cloud

2005-01-02, 11:09 am

Hey Muirenn ,
Hang in there kid! I have an ADHD Bipolar adult son so I can truly relate.
Also, have a few too many autoimmune issues which often makes life a
challange.
You may be suffereing from the post-seasonal blahs or maybe even need a
medication change.
I think maybe even both?
As far as memory, my middle name is not Memorex also BUT why not use one of
them very small micro-cassette recorders to help you throughout the day. I
am a few neurons absent from a real brain and I think this could help your
efforts tremendously. If you are also like me, and fingers are a problem,
this can help with having to write stuff down and lose it too!!!!!!
It is a worthy investment.
Major warm hugs to the Northerner pals!

Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

> Hi all,
>
> Happy new year.
>
> I am in a bad flare and I hurt so much. The weather is crazy and I am
> trying to potty train my 3 year old son. My husband has ADHD and so has
> no memory to speak of. He gets so upset when I forget things. I try so
> hard. It drives me crazy. I used to be an accounting clerk. I had most
> of my 300 customers names addresses and phone numbers memorized. Now If I
> don't write it down I forget.
>
> My husband has always depended on me to keep the wheel oiled and keep the
> house running smoothly, now I have trouble getting dressed some days. The
> pain is so bad.
>
> I am at a loss of what to do. Some days I am ok others I just want to
> cry. I am fighting to get disability. We are broke. I used to be the big
> bread winner. I have the better skill set.
>
> My husband is a artist. He is a writer. He has writes scripts but
> getting someone to buy them is a chore we have not yet accomplished.
>
>
> I am so sorry for my rant, but I am so lost. My effexor is not even
> working to keep the depression away anymore.
>
> I just don't know what to do anymore.
>
>
> Thanks for letting me vent
>
>
> As always
> Muirenn
>

2005-01-02, 7:11 pm

Michael Roeper wrote:

> I can offer some guidance about getting the SS disability. I'm in the middle
> of a big flare right now too so can't do it now but if you want to e-mail me
> off-group, I'll tell you what I learned after 3 years of fighting (and
> finally winning big-time).

Good of you to offer, Michael.
I was wondering, in ONT mother's can get child disability amount
(Province'/State). Is there something similar in State disability benefits for
her?
And could her hubby also file for SS disability for add..?
J

> I know...the whole thing sucks right now, huh?

Must, I just realized that she has 3 kids. Must be tuff !

Michael Roeper

2005-01-02, 10:08 pm

IN MY EXPERIENCE......

Getting any kind of SS disability based on mental stuff (especially
addictive stuff like alcoholism) is a lot harder than getting it based on
physical stuff. Here again, in my experience, I found that you automatically
get turned down for SS twice, the first two times. I didn't believe it when
people told me that but it ended up being exactly what happened to me. The
Fed's use the State of Oregon Dept of Vocational Rehab to do their
"determinations" for them. These are as an inept bunch of idiots that I've
ever run into (and I now have the file and I've read all their notes). You'd
be better off having someone who pours coffee down at Denny's making the
decision that you're disabled. AND...when I finally got it the lady at the
local SS office told be me that they were going to "appeal the verdict," of
my case because, "We don't want to have to pay you benefits....." They
never did though.

I made the mistake of emphasising my alcoholism and depression and found out
later that my chances of getting turned down became greater as a result.
Once they could call it "Lupus," it took a year to get the third (and, I
think, the final one available to me) appeal in front of an appeals judge.
As soon as the doc said "Lupus," the judge banged his gavel and I had what I
wanted. I wasn't in the courtroom 3 minutes.

GET AN ATTORNEY!!!! The folks that don't get one....don't get SS. I paid
mine $5,500 (the law's maximum they can charge) and I got a check for 3
years of back benefits (about $35,000 I think), over $1,200. a month (for
life most likely as I'm over 50) and Medicare.

I couldn't of done it on my own but then again, I have to be careful here.
The attorney spent about 10 hours to get her $,500 but then look what I got.
I don't begrudge her a bit.

I have a friend that needs (and deserves) based on the fact that he's a
complete loon almost unable to walk but he refuses to get some help with the
claim, choosing instead to do it himself. You know, for SS disability (and
that's all I'm talking about is disability) they take a formula based on the
number of hours worked or number of "quarters," or the biggest 3 quarters of
income of the last 4 or SOMETHING like that. If I'd waited a month to file,
I would have been ineligble for SS Disability alltogether based on the fact
that I worked very little since 1995. (That I'm willing to tak about
anyway).

BTW, always apply for SSI concurrently (at the same time) as straight SS
Disability. SSI is called an "entitlement" program whereby you can get some
benefits (about $575. a month, I think) without having the necessesary
"credits." In fact, I got my court review in Feb but it was like July before
I saw a cent of it. But I got SSI right away which they then took out of my
final settlement check and converted me to regular SS DIsability. And I will
say this, after 3 years of fighting, they're never late making a direct
deposit into my account. Not once.

BTW....one thing I learned from the attorney is that they take a lot of
consideration off of waht are called "Doctors chart notes." I didn;t have
the support of my doctors until I got a lot sicker after about 20 months of
being off work. Then I got a doc who has a reputation for keeping "the best
chart notes," and it was a slam dunk. If you don't have a doc who's willing
to go to bat for you, forget about it. If your own Doc doesn't think you
deserve to be disabled, you ain't gonna get it. I actually had mine in a
headlock and made him write a letter (which he really didn't want to do.
Doc's hate legal stuff.......remember that). The letter said I couldn't even
work part time, couldn't walk or stay sitting down, was unreliable do to
hospitilizations and doctors appointments, etc. It was really helpfull but I
had to practically threaten him to get it.

Getting SS is a nightmare and I almost gave up but for anm ex-wife who
promised a Doc that she'd help me, a Doc that claimed I deserved it. She
kept me at it until I got the thing done. By that time I was happy to
overdose on med's and be done with it all.

So don't give up....get some help with it!

Michael
"J" <faked...@emailaddress.com> wrote in message
news:41D842C2.6C207B16@execulink.com...
> Michael Roeper wrote:
>
middle[vbcol=seagreen]
e-mail me[vbcol=seagreen]
>
> Good of you to offer, Michael.
> I was wondering, in ONT mother's can get child disability amount
> (Province'/State). Is there something similar in State disability benefits
for
> her?
> And could her hubby also file for SS disability for add..?
> J
>
>
> Must, I just realized that she has 3 kids. Must be tuff !
>
>
>

2005-01-04, 7:09 am

Michael Roeper wrote:

> IN MY EXPERIENCE......
>
> Getting any kind of SS disability based on mental stuff (especially
> addictive stuff like alcoholism) is a lot harder than getting it based on
> physical stuff.

Good point, but misunderstand. Muirenn's hubby has ADHD. I was wondering if
hecould get SS based on Attention deficit disoder (which by the way, I think is
overdiagnosed these days). Also child has ADHD and wondered if there's state or
federal finance help for that for child.

Thanks for sharing though Michael. Otherwise good info there.
J

Michael Roeper

2005-01-04, 11:09 am

I didn't misunderstand (I don't think). I think gettting a SS DIsability on
ADHD will be harder thay, say getting it for Lupus, that's all.....I was
just speaking to the SS part of it.

My experience with the state and local stuff, especially after comparing
notes with my friend Mair in California (I think she wouldn't mind being
mentioned here, I hope not) is that the local stuff (compared to Federal)
really depends on where you live.

Oregon has almost nothing in the way of funding for such things anymore. It
used to be that the locals would fund some monthly income UNTIL a SS claim
came in (which THEY undertood sometimes took years) but you have to pay em
back when you got your retroactive dough from SS. AND, tney uised the same
idiots to ascertain your probability of getting the SS so it turned out to
be a real waste of time for me. I did get some food stamps for a few months
but getting them on a continuous basis turned out to be more trouble than it
was worth.

Lately there was a story in the paper where our county mental health
"experts" took a schitzophrenic woman who suddenly lost her funding (lost
if that day in fact) and literally dumped her is some cheap motel, paid for
the room for a week and gave her a handfull of food vouchers. All this
without notifying her family who had been involved in her care decisions for
decades. The poor woman was found 3 days later, dead in the bathtub with the
heat in her room turned up to 100 degrees???

In another case a guy lost his state medicade and could no longer afford the
$200 a month for his heart medicine. So every 10 days he would show up in
the emergency room, get a $2,500 workup (which he could not pay for but
evidently federal rules obliged them to take him in) and they would cut him
loose with a 10-day supply of the med's he needed.

Here in our county, the only way, basically, that the mentally ill can gert
any help of an emergency nature is to figure out some way to gert themselves
arrested. No kidding.

They don't have any funding here anymore. The state medicade budget has been
gutted from well over 100,000 recipients (it was a nitionwide "model") to
less than 40,000 recipients and their benefits are currently at risk.

But I understand that things are much better in California than they are
here. In Cal you can still get a "helper" to come in from time-to-time and
help with cleaning, shopping, etc. When I asked about that here they laughed
at me. Said they hadn't had funding for that in years. I honestly don't know
how the seniors are making it. Every state, and local (mostly the county was
involved in this stuff here) program has lost most if not all of it's
funding here.

I don't know if any of that helps but it's just what my experience has been.
Now that Bush has decided to "fix Social Security," I can hardly sleep at
night. I've seen his work and everybody receiving SS benefits of any kind
ought to be terrified of what's coming.

"J" <faked...@emailaddress.com> wrote in message
news:41DA8BEE.5C6E65F2@execulink.com...
> Michael Roeper wrote:
>
on[vbcol=seagreen]
>
> Good point, but misunderstand. Muirenn's hubby has ADHD. I was wondering
if
> hecould get SS based on Attention deficit disoder (which by the way, I
think is
> overdiagnosed these days). Also child has ADHD and wondered if there's
state or
> federal finance help for that for child.
>
> Thanks for sharing though Michael. Otherwise good info there.
> J
>

Andy

2005-01-04, 7:12 pm

In article <VpzCd.847974$8_6.833647@attbi_s04>, Michael Roeper
<roeper@comcast.net> wrote

[big snip]
>
>I don't know if any of that helps but it's just what my experience has been.
>Now that Bush has decided to "fix Social Security," I can hardly sleep at
>night. I've seen his work and everybody receiving SS benefits of any kind
>ought to be terrified of what's coming.
>
Ah yes: "America, the land of the fee"

--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Michael Roeper

2005-01-04, 7:12 pm

It's turning into "The land of the rich...."

Michael

"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:24s35yIEft2BFw6m@kitzbuhel.demon.co.uk...
> In article <VpzCd.847974$8_6.833647@attbi_s04>, Michael Roeper
> <roeper@comcast.net> wrote
>
> [big snip]
been.[vbcol=seagreen]
> Ah yes: "America, the land of the fee"

> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!

Muirenn

2005-01-04, 7:12 pm

Hi,

My husband is ok he does well. His parents never medicated him. If I could
get a doc to scrip him adderal xr we would be fine. But he can not get any
help. I am however considering applying for benefits for his daughter with
aspergers and ADHD.

I agree ADHD is over. As a result most people do not take the problem
serisoly. I just wish those who doubt it's existence could live with my
daughter for a week off her meds. The Aspurgers is a new dx so we have not
had time to get any info. I have however found out that a lot of what they
were calling "childhood Psychosis" is really just the aspergers.

As for me it is hard but I am getting through it. I had my physical today
for SSDI we will see what happens. I will be saying a prayer.

Any way thank you all who had helpful info and just some encouraging advice.

Sometimes it is lonely here when I hurt to bad to go out and or have company

Reading this NG has been a much needed outlet

As Always,
Muirenn

"J" <faked...@emailaddress.com> wrote in message
news:41DA8BEE.5C6E65F2@execulink.com...
> Michael Roeper wrote:
>
>
> Good point, but misunderstand. Muirenn's hubby has ADHD. I was wondering
> if
> hecould get SS based on Attention deficit disoder (which by the way, I
> think is
> overdiagnosed these days). Also child has ADHD and wondered if there's
> state or
> federal finance help for that for child.
>
> Thanks for sharing though Michael. Otherwise good info there.
> J
>

2005-01-05, 7:08 am

Muirenn wrote:

> My husband is ok he does well. His parents never medicated him. If I could
> get a doc to scrip him adderal xr we would be fine. But he can not get any
> help. I am however considering applying for benefits for his daughter with
> aspergers and ADHD.
>
> I agree ADHD is over. As a result most people do not take the problem
> serisoly. I just wish those who doubt it's existence could live with my
> daughter for a week off her meds. The Aspurgers is a new dx so we have not
> had time to get any info. I have however found out that a lot of what they
> were calling "childhood Psychosis" is really just the aspergers.
>
> As for me it is hard but I am getting through it. I had my physical today
> for SSDI we will see what happens. I will be saying a prayer.
>
> Any way thank you all who had helpful info and just some encouraging advice.
>
> Sometimes it is lonely here when I hurt to bad to go out and or have company
>
> Reading this NG has been a much needed outlet

Would the same doctor who treats your child, help your hubby? Maybe ritalin? As
long as you go with him /them and tell whether he's getting proper sleep, diet
and avoiding other drugs/alcohol. Perhaps they're afraid that he's an "abuser"?
http://www.nida.nih.gov/Infofax/ritalin.html
Hugs to you, you sure have a "full plate" to deal with,
J

2005-01-06, 7:14 pm