disibility lady called me

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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/2/2006 8:30 PM (GMT -7)   
  So it took me over a month to write/fill out my SSI/DIS appeal.  Mailed it out last week.
  This morning (while on the bowl...geesh) eyes my mum hands me the phone; it's the woman from disibility.
  She wanted to know who my rheummy was.  confused WHAT??????? confused   After 2 years these people do not know who to contact?  Goes to show they just may be contacting NO ONE!
  Anyway, I was happy & quite surprised that they were ALREADY looking at my case!  Only a few days!  I said, "so what should I expect next?"  she just replied I should be hearing something soon.
 
  I am so worried sick over the future as the money problem is getting bad again.  Yes, the general assistance helps.  But 200 dollars a month?  100 bucks went to the GI appointment & 75 to the rheummy....so what does that really leave you?  The Medicaid takes care of my PCP and meds, thank the Lord.  Bills are due....hope I get birthday money! LOL.
  Or better yet, I want this RA to go away so I can work.  sad That's what I want for my birthday.
  Here's to you all going through the same thing. 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/6/2006 10:57 PM (GMT -7)   

Hey Erin - I hope this means something positive. I will keep my fingers crossed to hear the "I GOT IT!!!" yell finally from you!

Did I ever tell you I was denied in January? That was my 2nd application. . . I had put down that they didn't get my "problem" right and the 2nd denial was STILL wrong! <sigh> My rhuemy said he never got anything from SDI regarding me either... what the heck?

I hope you hear something positive soon! Hang in there....I can't imaging trying to live on only $200 a month! That is insane!

***


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 1:21 PM (GMT -7)   
yep, i do remember when you were denied.  boy was i sad about that too!  mad this was my second denial as well, but my first appeal after a denial.
 
funny thing: my rheummy told me he was interviewed about my case.  so they had to have known who my doc was!  confused and now they don't? confused huh?  i wonder how long until i hear something about the appeal?
yeah, it's impossible to live on 200 dollars.  if i had no bills to pay, yes....but i have credit card payments (thanks to college & doctors & medication! have like $7,000 in CC debt).  the $200 they allot me each month...here's the breakdown: this month, $100 went to the GI visit; $75 went to the rheummy.  and am left with? that's right....nadda!  so it's sad but all the money (which was slim) i recieved for my birthday (thank God my birthday was this month) has to be put to my credit card bills. hopefully all of them will get paid ON TIME.
 
BUT...every 6 months you have to have a case review for assistance benefits. and this month so far, NOTHING has been put into my account!  so i'm trying to reach my case worker to see what happenned to the money? or else i'm in a big whole here! eyes
it really is impossible to do this. i mean, for Medicaid to cover me, i would have to find a GI and rheummy that accepts Medicaid...and i'm finding out, NOT MANY DO! so i'm in a fix....and it's stressful.  my honey told me yesterday, "when you need it...ASK ME!...i'de rather see you NOT get upset and struggle...just tell me when you need the money."
i don't know, i guess i'm too proud or stubborn. i'm just NOT used to this you know?  i was always working & always paid my way. i find it VERY hard to ask for help from people i know, even him.
i hope everything gets straightened out soon.
they say money doesn't buy you happinness....but it sure does make life easier.
so going to try to call AGAIN...to find out what is going on. God i wish i could work...life would be so easier. the i think of Whoopi Goldberg!...she was on general assistance one time in her life....and if Whoopi can do it!...so can i! LOL (trying to not depress myself) tongue
thank you Camama for listening. and i too hope the same for you, that your life gets easier as well.
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/7/2006 2:14 PM (GMT -7)   
Keep up the fight. You'll get a hold of someone soon.  I get so angry thinking about your situation. There just isn't any reason you should be going through this....
 
I would HOPE that once you are on Medicade that they have a list of doctors you can see to make life a bit easier for you in finding someone! And G-d willing, they are close by to you.
 
I'm keeping my fingers crossed for you!
**
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 2:25 PM (GMT -7)   

I know...it's a tough call.  I like my GI and he knows what he's doing & I would hate to change doctors....so I'll stick with him till, I don't know?....he puts me on a payment plan?

The rheummy I would like to change.  It's hard though, I have no booklet or anything that has a list of criteria/doctors/info....nothing!

And looking up these things online?  Forget it, you get no where.  Nothing is simple...not even remotely.

Basically my PCP and pharmacy accepts the medicaid & my hospital I have the charity care.  There is a hotline for the medicaid, maybe there is a booklet of participants I can get....YOU WOULD THINK THEY WOULD SEND THAT TO ME TO BEGIN WITH?

One thing is for sure...when I get to work as a nurse, I'll be a cess-pool of knowledge about "real life" scenarios! At least when I come across a patient in the same predicament...makes me happy that I'll know how to guide them.

Oh what a road we travel.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/7/2006 9:22 PM (GMT -7)   

In the words of my late Grandmother (who would have been 97 yesterday), "you said it, sister!"

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 9:56 PM (GMT -7)   
Godbless Grandma...sounds like my kind of people.
:)
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/8/2006 4:39 PM (GMT -7)   
eyes  i found out this morning finally what happenned to the money that i am suppose to get every month.  2 weeks ago i went for that re-evaluation thing & the lady today said that i will not lose anything, but it will take a while for me to get my benefits back again.  that's great....NO DATE!  what's a while?  she said "not too long". 
i sure hope it's by next week!  have 3 more bills to pay AND i need to see my GI doc! this is a bad time for this to be happenning.
all of my info is the same...nothing's changed.  why do they put people through torture?!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 4/1/2006 12:36 AM (GMT -7)   

Erin, what is the status of all this?

**


 


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 4/1/2006 12:47 AM (GMT -7)   
Hi Erin, sorry to hear you got shuffled in all that turmoil with your disability.No indeed it's not easy hand to mouth to begin with let alone this type of thing happening. My prayers are with you sweetie that it turns around real fast for you & you recieve your benifits quickly. Take care & hang in there. later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 4/1/2006 6:09 AM (GMT -7)   
Yep I know all about the medicade and it does suck to a degree because as you stated it is hard to find a doctor that will take medicade.My PCP found a Rheumatoliag and at first she said she did not take my insurance but after tell her every thing and faxing my files to her she agreed to take me and I'am so glade because she is wounderful.Just keep trying and tell your PCP that you need his/her help to find good doctor's that will take your insurance.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/2/2006 9:26 AM (GMT -7)   

thanx everybody,

no...argh!....i'm still left without any help.  i hope they issue me March's benefits. so that would leave me 2 months behind.

haven't heard anything from SSI yet. this would be awful if they make a person wait 6 months for an appeal denial. it's been about 3 already.

had to refinance my home! had to skip all my rheumatologist visits...

the rheummy & GI i pay out of pocket.  one is 100 dollars a visit...the other 75....so going broke quickly was easy.

i feel lousy, so even this isn't phasing me.

this too shall pass.....i suppose.

take care 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/7/2006 11:14 PM (GMT -7)   
eyes  geezaloo...still no word from anyone.
3 months for SSI/DIS appeal?  and for my general assistance, i haven't recieved anything since february!  i had to sign a bunch of papers ating nothing has changed in my condition and still cannot work.  i have my medicaid still...but not the other assistance.  eyes   called my case worker today & she said i had nothing to do with it...what? confused  if all it was, was remitting info (which nothing has changed) what's the problem.  she didn't know. but she said she'll have the person in charge review it again. i hope so. i'm depending on that.  i hope they give me the money owed since March 1st. my savings ARE GONE because of this. 
are ya supposed to file bankruptcy or what?  this is very stressful.
 
i'm kinda hoping that for my disibility appeal....longer means better?
 
this is terrible to go through while ill.
 
i want a remission...NOW! mad
thanx 4 leeting me rant.
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 4/9/2006 12:05 AM (GMT -7)   

Erin, I'm so sorry to hear you are still dealing with this! What the heck is going on w/those guys?

Have you tried calling lately? Any signs of response from anyone!?

Keeping you in my thoughts and prayers.

***


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/10/2006 8:01 AM (GMT -7)   

mad  no word not yet...FROM ANYONE!

the lady that deals with my GA case said friday, "The supervisor didn't sign my evaluation, it has nothing to do with me, and that she'll re-admit the papers again"...so i have no clue what that means!  eyes but, she reassured me that i will not lose anything monitary wise.  my Medicaid card came this month...so why not the other half of my assistance? eyes

it is very frustrating because i'm barely making my bills on time.  and the money that i recieve?...i use it to pay my rheummy & GI!!!!  so if i don't get it....I CANNOT GO!  i am hoping that everything gets settled in the next 2 weeks.

if no information has changed, i do not see the complication in this!  i don't know.

thanks for keeping me in mind Camama.

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/14/2006 9:07 PM (GMT -7)   

Hey Erin, have I missed a post? Did anything happen yet? the last post here was in April.

***


 


judyg
New Member


Date Joined May 2006
Total Posts : 4
   Posted 5/14/2006 9:48 PM (GMT -7)   
Erin - find a lawyer who specializes in Social Ssecurity disability cases. You should be able to find one who works on contingency - then you won't have to lay out any money. I never would have won my appeal without my lawyer - he was a godsend! Good luck!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/15/2006 6:15 AM (GMT -7)   
oh hey, thanks. nope. nothing at all yet. as far as i know, everything is still in the initial appeal process. never heard anything since like february? i did however file for an attorney through the SSD office; but i didn't hear anything from that neither.
so basically all has been quiet.
how long do appeals take? been like almost 4 months.
thanks again.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/15/2006 6:20 PM (GMT -7)   
I think they say 4-6 months, but this is your 2nd appeal, right? This is ridiculous!
 
I hope this means you're getting it!
**



 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/16/2006 8:41 AM (GMT -7)   
  cool hey Camama,
this would be my 2nd denial, but my 1st appeal after being denied twice.  so it's the initial appeal?  i do not think this appeal is being taken to court.  i think they are reviewing the case again?
 
i want to work so badly!  i really do not like this position i am in now!
it would be really wonderful if i could get all of my backpay and NOT HAVE TO BE disabled and actually get a remission and go back to my career & work etc...
 
it all stinks.  it still is a major adjustment.  i don't even know if i would be happy/content if granted disibility you know?
it's awfully strange.  i worked so hard at getting myself through school and pursuing a great career, for what?  just seems like everything just "stopped".
don't know if this makes any sense or not, but i think everyone who's gone through this kinda maybe feels/felt the same way.  it's very uncomfortable.
thanks for being there.
erin
ps....by the way, i finally did tell my boyfriend that i had filed disability.  feel better that i fessed up to that. 
 
{i think most of my reservations have to do with fear of failure. was always like that.  and even though i know it's not "me" that failed nor do i think illness and disease is a failure...this does in many ways to me feel that way.}  very weird feelings.  hard to explain.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


deb in indiana
Regular Member


Date Joined Aug 2005
Total Posts : 387
   Posted 5/16/2006 7:06 PM (GMT -7)   
Erin iam thinking of you tonight i was deined aug of 2005 and they called about some of my doctors and i haven't heard since so i called ssd and they told me here in indiana they are behind and i said when should i hear about the hearing and see said be calm it should be 20 more months and i said we had to file bankurcy,i had to quit my jobs cause i to young for a k/r my hard earned life savings is gone trying to keep up with everything and the meds now the new rumy dr is great put me on methotrexate and said i needed a new pain dr cause i need better pain management for fm this all got to me today so Erin keep hanging in there girl it will get better HUGS DEB

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/16/2006 8:52 PM (GMT -7)   
Awe thanks Deb. You hang in there too. Isn't horrible? In fact, I have no idea when I filed! LOL. I know it's over a year already...oh yeah...it was the 1st week of May in 2005. Denied in December 2005.
Bankruptcy looks to be in my future as well if I should get cut from Medicaid for some reason or if they take away my GA. My boyfriend is a major help...I haven't had to ask for anythign from him money wise but he has reassured me that nothing bad will happen given the worst case scenario. My laptop is from him! Very sweet...it was a gift to complete college with & a graduation present.
All I know is that it is a terrible thing to be ill with a chronic progressive disease & not being able to earn a living because of it....then loosing everything you have & receiving no help. It is very sad.
Every cent does go to doctor visits, medications and everything that goes along with this.
You're in my prayers.
I hope things get settled soon. Geesh, 20 months for you? I can only imagine what it is here in NJ!
Take care. Erin.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/16/2006 10:10 PM (GMT -7)   
Hey Erin,
 
I didn't realize (or forgot) you never told your honey that you applied. I thought he knew. Congrats on getting that off your chest.
 
I hope you hear something soon. I know exactly how you feel. I also know that you put extra stress on youself in the "thoughts of failure" category because of the crap (can I say that here?) the man pretending to be a father-figure put on you. tongue It is not your fault you are sick. I know you want to work, but you need to get better - and getting better means no more stress and lots of rest. So SDI better kick in for you soon!
 
My thoughts are with you.
***
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/17/2006 2:55 PM (GMT -7)   

thanks Camama, you're the best.

yeah...i NEVR TOLD my honey about ANYTHING!  i never told him i filed for SSI/DIS or general assistance or anything.  i only told him i applied & recieved Medicaid.  he knew i had to stop working last May. but nope...i never fessed up & told him about the disability until just recently.

i don't know.  i was always an over-achiever & never could wait for the next thing and always went a million miles an hour. things i had planned? never worked out that way.  and now i just feel stuck.  stuck?

i am happy that i am walking better & am happy that it seems like i'm finally starting to respond to the medications; it's just now at a scary point of not knowing what's next.

see? going a million miles a minute! wishing it was at a point where i was reliable & consistant & could work.

hoping all good things to come.

thanks Camama.

:) 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/17/2006 6:09 PM (GMT -7)   

sllooowwww down Erin! <scrrrrrreetch!> tongue  

Once you start feeling better THEN you have to recouperate - so, baby steps. Your walking is awesome! Keep up the great work, but for now, that is ENOUGH to add to your plate. You need to be thinking in terms of months, even a few years - not a few days or few weeks to dive back in to your goals. I KNOW it is hard - trust me, I KNOW!

Keep feeling good and hang in there!

***


 

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