Very Overwhelmed right now!!!

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mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/14/2009 8:28 PM (GMT -7)   
I have not posted in a while, but have been checking in. Quite frankly the last couple of months with my hubby have been a very bumpy road. After his issue of being neutropenic in March, he has had a severe headache that has NEVER gone away! So, a few weeks ago, he started havin seizures, so we now have yet another specialist in the mix (a neurologist, and the jury is still out on him). I have had to repeat to this man several times about my husband's liver disease, tell him about problems with meds, etc and either he does not write it down or just could care less.....sorry that was mean! At any rate, he has doneo MRI with and without contrast, CT scans which show nothing, and most recently an EEG which we are waiting for results from.
 
So, today I get home and we have a letter from the social security office, and his SSI benefits (as little of a monthly amount that we were getting) are being discontinued effective 6/1/09 due to the fact that my income is "too high". HA!! I could get on a whole soapbox about what a joke that is, but we won't go there.  So, I can probably cut more corners and go without the $200 a month we are getting....BUT this also stops his medicad benefits which leaves him with NO insurance, and quite frankly we are completely freaked out over this!! The very minute the transplant center gets wind of this, he's taken off the list until insurance issues are cleared up. The other side of that is I could add him to my insurance at work....but, after taxes and insurance are taken out of my pay, that would literally leave NOTHING to bring home to live off of!!! SO, I have no idea what to do, where to turn, etc.....this is so upsetting! I will, however, call the social worker at the transplant center in the morning and see if she can step in and help me wade through the waters of appeals, etc......sorry for the lengthy message, I just needed to vent!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/15/2009 7:59 AM (GMT -7)   
Hello Mer, I am sorry that your husband is feeling so unwell. And that you are going through a tough time.

You know you can vent here anytime. I saw red when I read the part about Social Security.
I got my husband's approved on appeal. But because I too made too much money he wasn't eligible for any benefits.......talk about a catch 22. So did your husband not get enough quarters of work history in before he applied for it? It sounds like he is getting what they call the (Welfare side of SSI.) There is 2 sides of Social Security. One is based on the person's work history and the other is for low income people who are disabled.
That's what happened to my husband. We didn't apply soon enough once he was not able to work anymore. He didn't have enough work quarters in the last 5 years before we filed. Dummy me.....I told him don't worry about not being able to work, that I made enough to support us both. I wasn't educated enough on the Social Security system or the expenses that lay ahead with liver disease.

You may want to call a lawyer.........even email your congressman/senators. This system has to change........they penalize people for not applying soon enough.

Hang in Mer .....take care........thoughts and prayers.....

Post Edited By Moderator (hep93) : 5/15/2009 10:01:06 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/15/2009 9:06 AM (GMT -7)   

Mer, I am sooo sorry to hear of your difficulties.  My first suggestion was going to be to find another neurologist, but with the insurance issues you have right now, that might not be so easy.

Otherwise, I can only echo what PG said.  Definitely appeal the decision.  It doesn't help that the government is an economic mess and they are cutting corners with Medicaid.  I've heard that even Medicare may be affected.

I hope that things work out for you guys.  It's just so unfair.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/15/2009 10:15 AM (GMT -7)   
Thanks, PG and Hep93...

I did have a conversation with the financial person at the transplant center this morning, and she send me about 20 pages of information and an application to fill out. Evidently, at least here in TX, there is a medicaid "spend down" program. So, they would qualify my husband based on HIS income (NOT MINE) and charge him for the insurance benefits based on that. So, checking into that, and also calling our caseworker at medicaid to get the appeal started. Yes, we did qualify at first under SSI, which is how he got the medicaid. This is all sooooo frustrating, and exhausting. I checked with the group program at work, and if I were to put him on the insurance here, he would have 12 month waiting period before there is any coverage due to pre-existing condition (alot of help that will be, huh??). Needless to say, I have a headache and am just flabbergasted, but will muster through all this. Sounds like the people at the transplant center are going to help me wade through alot of this, and also they have gotten me in touch with the prescription assistance person to help us with his prescriptions in the meantime.......what a mess!

By the way, called the neurologist this morning, and left yet another message and I was not very nice to the person that answered the phone!! You are right, as soon as we get this insurance mess straightened out, I will be switching docs!!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/15/2009 1:49 PM (GMT -7)   
Mer, I don't recall...how long has he been out of work?  Did he lose his job or have to quit?  I'm asking because Pfizer has just come out with a program to give FREE meds to anyone who has lost their job and insurance since Jan. and has been taking certain drugs for 3 mos. or longer.  Of course, there's also the various pharmaceutical company indigent drug programs, too.  I'm glad that the SW is helping you.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/16/2009 6:54 PM (GMT -7)   
He's been out of work for about 5 years now. He had to quit working due to his illness. By that time, he had not paid enough into disability to get SSd, so we were qualified for SSI based on household income.....what a mess! I saw your post about Pfizer, and it's definitely worth a try, huh??

Thank you for the info......he also seized again last night, and they said his bloodwork looked fine, and his liver numbers look good so it does not look like there is anything there that may have caused the seizures.....nothing showing up on MRI or CT either, so who knows.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/17/2009 11:09 AM (GMT -7)   

I'm so sorry that he has developed seizures.  Is he taking any meds to ward them off?

The hitch with the Pfizer giveaway is that the person has to have lost their job since Jan.  Hopefully, he will at least get his Medicaid back.  With the economy being what it is now, they are making big cuts to Medicaid.  I've also heard that they might do the same to Medicare.  So with one hand the govt. is giving (I just got a one-time $250 ck. that is part of the economic recovery plan) and with the other hand they are taking away.  I think they are taking away far more than they are giving, when one considers cuts to education and other areas.  I know this is to get us out of the current mess, but some will undoubtedly suffer.  I just hope your husband isn't one of them.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/17/2009 7:23 PM (GMT -7)   
Yes, he is on anti seizure medication, although I am thinking it needs to be adjusted again. We will see.

We just got our $250 check, too.....was a nice little surprise....especially since looks like we will have to fight for his medicaid, etc. We are going to fight this battle. It is quite a battle.....sometimes I just don't know which is worse, the liver disease or fighing with the government!! I took the weekend to regroup and Monday will hit it full force.

Thank you for all your input......

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/17/2009 8:22 PM (GMT -7)   

Mer, he might also need to try a different seizure med.  There are so many, so if one doesn't work it is sometimes prudent to try another...or just adjust the dosage, as you mentioned. 

I'm glad he got the check!  Mine was direct-deposited over a week ago and I was surprised, as I wasn't expecting it until the end of May.  I'm using it to go spend a week with my friend in NY this summer.  I haven't been anywhere in over a year, except out to dinner twice.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 5/18/2009 6:20 PM (GMT -7)   

 

Mer,

 

I’m so sorry to learn of the difficulties you’ve been facing.  I pray that God gives you the strength to continue your struggle and that that your husband receives the transplant he so desperately needs.

 

Penny

 


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/18/2009 6:32 PM (GMT -7)   
Penny,

Thank you! I need all the prayers I need. I feel much more refreshed after the weekend, but being at work today I can tell the stress is starting to take a toll.....full time job, caretaker, mom...etc. YOu know how it goes. I am going to treat myself one day this week to a pedicure...just the thought of someone rubbing my feet for an hour sounds wonderful!! LOL!

Hep-

I am so glad your are going to go do something FUN...you definitely deserve it. Later this summer, I am flying to Atlanta to celebrate my grandmother's 90'th B-day!!! She is such an amazing woman, and I hope that if I live to be her age, I am just like her. She still drives, and works part-time babysitting!!! I am serious! Isn't that something!

Got a letter from the Texas Health Dept today and it was explaining that we may be eligible for medicaid benefits even without the SSI if he is unable to work, etc.....definitely think he will qualify......so, calling them tomorrow.

Thanks for all the encouragement!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/18/2009 8:44 PM (GMT -7)   
Good luck with Medicaid, Mer!  I definitely think he qualifies.  That also bodes well for your that your g'mother is doing so well at her age!  My g'mother lived to be 92, my mother 82 (and she was alcoholic), and my aunts into their 80s and 90s. 

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 5/19/2009 7:43 PM (GMT -7)   

Mer, Sorry to hear of all your troubles with your husband and insurance. I will tell you alot of states have a spend down program that allow him to get certain benefits and still leave you some assets. I know a couple that got divorced to get health benefits, its a crazy world with this stuff. The spend down program was originally started so the "healthy partner" does not lose every thing if a nursing home becomes an issue but was found to be beneficial in cases of catastrophic illness. Also some states still have The Homestead Act so that the healthy partner or surviving partner doesnt lose their home. I wish I knew more about Texas rules, I lived there but as a child so the financial stuff wasnt important, just the boys in school LOL.

Sue


When I started counting my blessings my whole world turned around.


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 5/19/2009 9:00 PM (GMT -7)   

 

Mer,

 

Glad to hear that things are working themselves out.  You have enough on your plate without having to worry about the financial aspects this.  A pedicure sound’s great!  Right now I have to settle for my 7-year old Grandson rubbing my back trying to bribe me into letting him have an oatmeal cream pie!

 

I hope that if I live to be as old as your Grandmother, that I’m as active as she is!  You know, it’s probably what keeps her focused and healthy.  That is surely something!

 

I’m glad to see you in better spirits.  You need a break too. 

 

I’ve gotta get some sleep.  I’ll catch up with you later.

 

God bless you.

 

Penny

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