Re: whine & cheese

September 15, 2010

GOOD ANSWER!!! ROSIE.. I'm getting to be a bit of both I guess..

Re: Roll Call, please.............

Still alive, rough year. In ICCU 3 times plus surgery, blood transfusion, pericarditis. Sarc is in MAJOR flare right now after surgery, everything is lighting up. Trying to hang in there. Not immunosuppressed at the moment. Taking anti-seizure, anti-anxiety and pain killers. No insurance so trying to get help. Read email daily just do not have anything to add that would not just be me whining at this point. I pray for everyone I see struggling on here.>

September 16, 2010

Thank you for the encouragement, you may regret it! No, I do not have SSI or

SSD. I am trying to get up the energy to fill out all the stuff to apply. I have

not worked for 8 years so I am apparently not eligible for a lot of stuff. I am

trying to figure out what, if anything I am eligible for. I have not been

getting any care for years due to no money to pay up front like they require, I

guess that is how I ended up in such bad shape this year. But it makes for a

poor case with no documentation except that which is 15 years old and just

recent, which is incomplete. I still need more tests (neuro and cardiac) but I

can not even afford to get in the door, much less pay for the tests. I am tired,

in pain and feeling apathetic about the bureaucratic bs that needs to be waded

through to make anything happen. So there is my whine...next post I will try to

throw in some cheese too.

Stacie

September 16, 2010

I hear ya, -- when do we get help? :-( L. -Maye (Baltimore MD)To: Neurosarcoidosis Sent: Thu, September 16, 2010 11:30:56 AMSubject: Re: whine & cheese

Thank you for the encouragement, you may regret it! No, I do not have SSI or SSD. I am trying to get up the energy to fill out all the stuff to apply. I have not worked for 8 years so I am apparently not eligible for a lot of stuff. I am trying to figure out what, if anything I am eligible for. I have not been getting any care for years due to no money to pay up front like they require, I guess that is how I ended up in such bad shape this year. But it makes for a poor case with no documentation except that which is 15 years old and just recent, which is incomplete. I still need more tests (neuro and cardiac) but I can not even afford to get in the door, much less pay for the tests. I am tired, in pain and feeling apathetic about the bureaucratic bs that needs to be waded through to make anything happen. So there is my whine...next post I will try to throw in some cheese too.

Stacie

September 16, 2010

Stacie, which state do you live in? Oh, and if you're bringing the cheese, I love warm brie on Granny apples.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Thu, 16 Sep 2010 15:30:56 +0000> Subject: Re: whine & cheese> > Thank you for the encouragement, you may regret it! No, I do not have SSI or SSD. I am trying to get up the energy to fill out all the stuff to apply. I have not worked for 8 years so I am apparently not eligible for a lot of stuff. I am trying to figure out what, if anything I am eligible for. I have not been getting any care for years due to no money to pay up front like they require, I guess that is how I ended up in such bad shape this year. But it makes for a poor case with no documentation except that which is 15 years old and just recent, which is incomplete. I still need more tests (neuro and cardiac) but I can not even afford to get in the door, much less pay for the tests. I am tired, in pain and feeling apathetic about the bureaucratic bs that needs to be waded through to make anything happen. So there is my whine...next post I will try to throw in some cheese too.> > Stacie > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

September 17, 2010

I live in Colorado. Yum, now I am hungry that is a personal fave of mine too,

honey crisp apples are great as well and just starting to come into season.

>

> Stacie, which state do you live in? Oh, and if you're bringing the cheese, I

love warm brie on Granny apples.

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

September 17, 2010

Stacie, I do know what tired is, and I hate that you are feeling so ill. Just FYI you can apply for SSD but they would have to approve to a retro date of 2006 or 2007; and with no records that would probably be difficult. You may qualify for SSI which carries Medicaid Gold (pays for everything). There are also many people who apply on their spouses or parents social security credits, it does not hurt that person and allows you to get the better financial benefits. The local SSA office can tell you how to do this, and if it is possible in your case. Also, most large cities have hospitals that are University based (Such as Shands Gainesville UNF) These hospitals are usually excellent, accept medicaid, and have programs to provide free care to people

who can not afford it. It is awful that people have to seemingly go through a million doors to get things done, but you have to climb to get to the top. And no, I am not a healthy person messing with you, I work because I desperately need my insurance if I am going to live. I will not take my family down trying to keep me alive as long as God gives me the grit and strength to make it to work and make it through the day. (And yes I have sat in my office with the door closed working and crying at the same time because of the pain) I need my paycheck, but not as much as the insurance. I could figure out a way to work and make money, I can't cover my medical bills. I also as an adjudicator do not __ __ anyone, I will fight to the dirt even on difficult cases if the person needs help. As I often say, "if you are really sick, I'm the adjudicator you want; because I understand". I know your

tired, but get help if you need to to fill out the paperwork. Call the local medicaid office and see if they have a list of providers that help people without insurance, help with housing, help with utility bills, help with free groceries. etc.. If you need medicine go to NeedyMeds.org; you can get a prescription at a Health Dept - most don't cost over $25.00 a visit and you can apply for special allowance and a lower charge if any, if your situation warrants. Check for a hospital like the one I spoke about, or just call the hospitals and ask if they have such a program. I know you don't feel like it, you are exhausted beyond belief, and every movement feels like it takes everything you've got; but it's a battle you've got to fight, and let other people help you with it. If you lay down, or quit fighting Sarc will be on you before you can blink, and it is determined to win. Besides if you

try something, the worst thing that can happen is they say no, or they don't have that program - it is not going to make the current situation any worse; and it just might give you the help you need.

Sorry your so bummed, and I admit just like any profession, there are lots of good guys; but the only ones that get noticed are the few rotten apples.

I do pray that things start turning around, and you can start getting the care you so desperately need. **Check and see if you can get in a sarcoid trial, your in an area (Boston) where that may be possible. In trials they provide medicine, testing and medical care for the ailment, and alot of times they pay the people who help them with the research.**

To: Neurosarcoidosis Sent: Thu, September 16, 2010 4:46:19 PMSubject: Re: Re: whine & cheese

I hear ya, -- when do we get help? :-( L. -Maye (Baltimore MD)

To: Neurosarcoidosis Sent: Thu, September 16, 2010 11:30:56 AMSubject: Re: whine & cheese

Thank you for the encouragement, you may regret it! No, I do not have SSI or SSD. I am trying to get up the energy to fill out all the stuff to apply. I have not worked for 8 years so I am apparently not eligible for a lot of stuff. I am trying to figure out what, if anything I am eligible for. I have not been getting any care for years due to no money to pay up front like they require, I guess that is how I ended up in such bad shape this year. But it makes for a poor case with no documentation except that which is 15 years old and just recent, which is incomplete. I still need more tests (neuro and cardiac) but I can not even afford to get in the door, much less pay for the tests. I am tired, in pain and feeling apathetic about the bureaucratic bs that needs to be waded through to make anything happen. So there is my whine...next post I will try to throw in some cheese too.Stacie

September 18, 2010

I've not had honey crisp apples. I'll have to see if we have them around here (Indiana).

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Fri, 17 Sep 2010 15:36:39 +0000> Subject: Re: whine & cheese> > > I live in Colorado. Yum, now I am hungry that is a personal fave of mine too, honey crisp apples are great as well and just starting to come into season. > > > > >> > > > Stacie, which state do you live in? Oh, and if you're bringing the cheese, I love warm brie on Granny apples.> > > > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

September 18, 2010

Connie, you are such a treasure trove of information! I had no idea that someone could apply on their spouse's or parents' SS credits. Thank you for taking time to share your knowledge & experience with the group, with all the pain you are going through yourself. You are so appreciated.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 17 Sep 2010 21:13:15 -0700Subject: Re: Re: whine & cheese

Stacie, I do know what tired is, and I hate that you are feeling so ill. Just FYI you can apply for SSD but they would have to approve to a retro date of 2006 or 2007; and with no records that would probably be difficult. You may qualify for SSI which carries Medicaid Gold (pays for everything). There are also many people who apply on their spouses or parents social security credits, it does not hurt that person and allows you to get the better financial benefits. The local SSA office can tell you how to do this, and if it is possible in your case. Also, most large cities have hospitals that are University based (Such as Shands Gainesville UNF) These hospitals are usually excellent, accept medicaid, and have programs to provide free care to people who can not afford it. It is awful that people have to seemingly go through a million doors to get things done, but you have to climb to get to the top. And no, I am not a healthy person messing with you, I work because I desperately need my insurance if I am going to live. I will not take my family down trying to keep me alive as long as God gives me the grit and strength to make it to work and make it through the day. (And yes I have sat in my office with the door closed working and crying at the same time because of the pain) I need my paycheck, but not as much as the insurance. I could figure out a way to work and make money, I can't cover my medical bills. I also as an adjudicator do not __ __ anyone, I will fight to the dirt even on difficult cases if the person needs help. As I often say, "if you are really sick, I'm the adjudicator you want; because I understand". I know your tired, but get help if you need to to fill out the paperwork. Call the local medicaid office and see if they have a list of providers that help people without insurance, help with housing, help with utility bills, help with free groceries. etc.. If you need medicine go to NeedyMeds.org; you can get a prescription at a Health Dept - most don't cost over $25.00 a visit and you can apply for special allowance and a lower charge if any, if your situation warrants. Check for a hospital like the one I spoke about, or just call the hospitals and ask if they have such a program. I know you don't feel like it, you are exhausted beyond belief, and every movement feels like it takes everything you've got; but it's a battle you've got to fight, and let other people help you with it. If you lay down, or quit fighting Sarc will be on you before you can blink, and it is determined to win. Besides if you try something, the worst thing that can happen is they say no, or they don't have that program - it is not going to make the current situation any worse; and it just might give you the help you need.

Sorry your so bummed, and I admit just like any profession, there are lots of good guys; but the only ones that get noticed are the few rotten apples.

I do pray that things start turning around, and you can start getting the care you so desperately need. **Check and see if you can get in a sarcoid trial, your in an area (Boston) where that may be possible. In trials they provide medicine, testing and medical care for the ailment, and alot of times they pay the people who help them with the research.**

To: Neurosarcoidosis Sent: Thu, September 16, 2010 4:46:19 PMSubject: Re: Re: whine & cheese

I hear ya, -- when do we get help? :-( L. -Maye (Baltimore MD)

To: Neurosarcoidosis Sent: Thu, September 16, 2010 11:30:56 AMSubject: Re: whine & cheese

Thank you for the encouragement, you may regret it! No, I do not have SSI or SSD. I am trying to get up the energy to fill out all the stuff to apply. I have not worked for 8 years so I am apparently not eligible for a lot of stuff. I am trying to figure out what, if anything I am eligible for. I have not been getting any care for years due to no money to pay up front like they require, I guess that is how I ended up in such bad shape this year. But it makes for a poor case with no documentation except that which is 15 years old and just recent, which is incomplete. I still need more tests (neuro and cardiac) but I can not even afford to get in the door, much less pay for the tests. I am tired, in pain and feeling apathetic about the bureaucratic bs that needs to be waded through to make anything happen. So there is my whine...next post I will try to throw in some cheese too.Stacie

September 19, 2010

Yes, thank you Connie. I will see what we can get accomplished. Thank you for

your help and concern.

Stacie

September 20, 2010

I've learned something great, i love gala's but i didn't know they didn't brown

thanks

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Sent from AT & T's Wireless network using Mobile Email

- Re: whine & cheese

>

> I live in Colorado. Yum, now I am hungry that is a personal fave of mine too,

honey crisp apples are great as well and just starting to come into season.

>

> >

> > Stacie, which state do you live in? Oh, and if you're bringing the cheese, I

love warm brie on Granny apples.

> >

> > Ramblin' Rose

> > Moderator

> >

> > A merry heart is good medicine. Proverbs 17:22

> >

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

September 24, 2010

I'm just glad 2 help u all have done so much 4 me, not to mention being there 4

me n some of my darkest hours u r all appreciated