Re: Well folks... I called in sick./Tigger

[Guest guest]

There should be something people in your position can do. What doesn't make any sense is that say you stopped working because you could not even sit up. Even if you can get SSDI, by the time you would finally get it, you'd be lucky if you had a cardboard box to live in. It will make 2 years since I first applied in October. I had not even planned on ever applying either. It just so happened that my husband had been on TDI for like 6 months cause he was on low dose chemo for what they thought was sarcoidosis. (They still don't know what, if anything, is wrong with him.) Anyway, his TDI was getting close to running out, so he called for SSDI and did a phone interview. While he was talking to the woman interviewing him, he told her about me. SHE is the one who got me to apply. She told him that fibromyalgia had just recently been added to the list of acceptable conditions for disability in RI. I never knew that. When I had asked my rheumy about disability, she told me I would never get it and it was best that I work, even if it was like 10 hours a week. So during the time I was out of work since I had lost my last job I was thinking I was going to go back to work as soon as I started feeling better. I really didn't think this pain and sh*t would last THIS long. I thought once I was on pain meds I would be OK to work again. I didn't even KNOW back then that some people NEVER get better. My whole body is now so weak from this thing that I can't get down the stairs without help. This is why I only leave the house maybe once a month or so. This past winter I was in the house for over 3 months straight. I didn't even venture into the hallway. If I don't end up on SSDI I might as well start using cocaine or something because I'll be forced to try to work. I just know I'll go through jobs faster than toilet paper cause no one is going to let an employee lay down when they get too tired or call out at the spur of the moment. I have a perfect track record when it comes to work. I've never hopped from job to job. I'd hate to ruin my work history because of this. I just keep hoping to get on SSDI so I can finally go to physical therapy like my docs want me to. (You DO know about the great Fibromyalgia Clinic they have in field, right? It is run by Dr. Rafal. He is supposedly the BEST doc to see for fibro. If I had a way to get there and enough money to pay the copays, I'd be there tomorrow.) I figure once I have been doing the therapy and hopefully start feeling better, I can go back to school like I have been wanting to and work part time in the meantime. That can all fall to pieces if I get denied, denied, denied. This is why I have a lawyer waiting to take my case if I get denied a second time. He is confident he can win and he's supposed to be so great. I'm just keeping my fingers crossed.

I know there are other things out there besides SSDI and unemployment. There is GPA (general public assistance). I tried getting on that, but because I'm married I was out of luck. I have an aunt who is on it. You have to make almost nothing to be eligible for it. Here is a link to the site for us Rhode Islanders:

http://www.dhs.state.ri.us/dhs/adults/dgpadult.htm

My aunt that is on it has medical problems. She had meningitis and a cracked skull that was leaking cranial fluid through her nose. (Long story.) She is married, but her husband does not work. (He's a freeloader and a bum.) She had been on welfare for over 25 years or something until my cousin turned 18. I know she got a huge settlement when she first got it. I know you probably looked into all of this already. I am just trying to think of something that might be able to help you out. If I wasn't married and got on disability, I would get enough money to survive, not live. Not even really survive. Maybe if I lived on Ramen noodles, which I pretty much do now. Even though I don't HAVE to work because I have my husband to fall back on, it has really strained things since he doesn't make big bucks. If I didn't live in an apartment w/ incredibly cheap rent, we would be in big trouble. My mother is a caregiver for my landlady who has Parkinson's, so this is how I lucked out getting this place. It's a shithole, but it's better than the street or a shelter. Do you have any family who can help you? My parents live 2 houses down. They can't help me financially, but they do help me with giving me rides to the doc when I need them. Have you tried talking to someone like a counselor or social worker who might be able to tell you some ways to help you financially? I know the "assistance" in RI is not so great. We tried EVERYTHING to get some help when my husband was on TDI. We couldn't get welfare cause they said we didn't have kids, couldn't get any help at all except his TDI. Even TDI messed up a couple times and forgot to pay him a couple weeks. No one seemed to care that we had to go without food and all our checks bounced just because someone made an error in the office. It is very frustrating. My husband even wrote to Dick Cheney's office back then telling them about the state of assistance in RI. He got a call back and spoke with someone for over an hour. They said they would look into it. Ha. Nothing ever came of that either. He ended up going back to work and that's how it has been ever since. I still don't know for sure if I will get on SSDI. My age is making it really tough. For all I know, I could be denied again and have to go to a hearing and still be denied because the judge doesn't believe in fibro like what happened to that person from the RI fibro group.

<sigh> I just don't know what to do. Maybe you can check out the Yahoo disability group. There is a plethora of info there. Maybe you'll get lucky and find something to help you. I'm keeping you in my thoughts. If I hear of anything that might help, I'll be sure to tell you. Take care.

~*Kerrie*~

Re: Well folks... I called in sick.

Ordinarily I like my job (o.k. now we have to say liked my job). Unfortunately, there is only me. Without my pay, I have NOTHING. Isn't that a warm and fuzzy feeling?

Tigger

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[Guest guest]

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

Re: Well folks... I called in sick.

Ordinarily I like my job (o.k. now we have to say liked my job). Unfortunately, there is only me. Without my pay, I have NOTHING. Isn't that a warm and fuzzy feeling?

Tigger

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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[Guest guest]

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

Re: Well folks... I called in sick.

Ordinarily I like my job (o.k. now we have to say liked my job). Unfortunately, there is only me. Without my pay, I have NOTHING. Isn't that a warm and fuzzy feeling?

Tigger

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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[Guest guest]

Did you like Dr. Rafal? I've heard good things about him from people in the RI fibro group. My doc wants me to go 4 times a week too. That would cost me at least $80/week in co-pays. Yeah, right. No way I can swing that. Not unless I get SSDI. My rheumy wants me to go for deep tissue massage and water therapy. I actually used to go to water aerobics. This was when I started feeling run down and sick, but years before I was diagnosed. North Providence Library is where I went for water aerobics. Not a lot of people know that they have the pool there. They also have a wonderful sauna and hot tub. It's all very clean and well maintained. The water aerobics instructors are always kids who go to N. Prov. Highschool, lol. It DID help me though. It costs $35/month for a membership for someone who is not a resident of N. Prov. They have a weight room there, aerobics classes, etc. IMO, it's better than joining a gym. When I did the water aerobics I went with my mom. My mom still goes, she has been going for @ 5/6 years now and she's lost A LOT of weight and it's helped her arthritis too. I wish I could afford to go. I'm afraid to get a membership cause I might go only once or twice, depending on how I feel. I know the members can bring a guest a couple times so the person can see what it's like. I liked the water aerobics class. It was mostly women in their late 40's, early 50's. And hardly anyone was thin, so I felt comfortable. I was the only one to go in the pool wearing men's bathing suit trunks, lol. I just couldn't get up the guts to put a bathing suit on. They make you take a quick shower before going in the pool, which is great cause it keeps the pool really clean.

I know how you feel about day to day life. I wake up, watch TV, eat breakfast while watching TV, read, sometimes take a nap, read more, watch more TV, sleep more. Then around 3 or 4 I get on my PC and try to stay there till at least 7 or later. I am usually up till 3 am, depending on how I feel. Once every few months I will sleep the month away. I wake up at 7:30 am when my husband leaves for work. I usually go back to sleep for an hour or two. My doc has told me to try to avoid napping during the daytime, and I really do try. Sometimes I just can't keep my eyes open. That's how I'm starting to feel right now since I haven't slept. That is my day to day life. Rarely does it change. Rarely do I see another human being except for my husband. I have my kitties who keep my company all day. I prefer to be alone most of the time, but not this much. I'm lonely. Maybe some day if you feel up to it we can go to lunch or have a drink or something. Even if you want to go to one of the meetings one night. I can't go out with the one friend I have left cause I cannot keep up with her. She doesn't realize she is going to fast for me, and I get sick of having to say I need to sit down. Plus she wants to go to the bar all the time, lol, and I don't really like to drink. Sometimes I just wish I had someone to go to the movies with, even if it was only once a month. Someone besides my husband, who never wants to go out. I use to have the Castle Cinema right down the street before they closed down. It was a one minute walk away, and they used to have daily matinees that only cost about $2. I miss that place so much. I can't go for walks alone because my neighborhood is not so great. I get harassed by the men around here when I go out. Just 2 streets over is a really bad street where there are always shootings and lots of drugs and gangs. This used to be a nice neighborhood too. My street is pretty quiet. It's either older people or Hispanic families, and they are all pretty nice. They are very family orientated so they are always having these cook outs where they sing really loud, it's so funny.

Oops, I didn't mean to babble on and on! I hope you can find a way to enjoy your time off though. Do you like to read? I never asked you your age, huh? I'm 27- 28 in June. Everyone says I seem a lot older though, whether that is good or bad, who knows, lol. Well, back to the posts!

~*Kerrie*~

Re: Well folks... I called in sick./Tigger

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

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[Guest guest]

Did you like Dr. Rafal? I've heard good things about him from people in the RI fibro group. My doc wants me to go 4 times a week too. That would cost me at least $80/week in co-pays. Yeah, right. No way I can swing that. Not unless I get SSDI. My rheumy wants me to go for deep tissue massage and water therapy. I actually used to go to water aerobics. This was when I started feeling run down and sick, but years before I was diagnosed. North Providence Library is where I went for water aerobics. Not a lot of people know that they have the pool there. They also have a wonderful sauna and hot tub. It's all very clean and well maintained. The water aerobics instructors are always kids who go to N. Prov. Highschool, lol. It DID help me though. It costs $35/month for a membership for someone who is not a resident of N. Prov. They have a weight room there, aerobics classes, etc. IMO, it's better than joining a gym. When I did the water aerobics I went with my mom. My mom still goes, she has been going for @ 5/6 years now and she's lost A LOT of weight and it's helped her arthritis too. I wish I could afford to go. I'm afraid to get a membership cause I might go only once or twice, depending on how I feel. I know the members can bring a guest a couple times so the person can see what it's like. I liked the water aerobics class. It was mostly women in their late 40's, early 50's. And hardly anyone was thin, so I felt comfortable. I was the only one to go in the pool wearing men's bathing suit trunks, lol. I just couldn't get up the guts to put a bathing suit on. They make you take a quick shower before going in the pool, which is great cause it keeps the pool really clean.

I know how you feel about day to day life. I wake up, watch TV, eat breakfast while watching TV, read, sometimes take a nap, read more, watch more TV, sleep more. Then around 3 or 4 I get on my PC and try to stay there till at least 7 or later. I am usually up till 3 am, depending on how I feel. Once every few months I will sleep the month away. I wake up at 7:30 am when my husband leaves for work. I usually go back to sleep for an hour or two. My doc has told me to try to avoid napping during the daytime, and I really do try. Sometimes I just can't keep my eyes open. That's how I'm starting to feel right now since I haven't slept. That is my day to day life. Rarely does it change. Rarely do I see another human being except for my husband. I have my kitties who keep my company all day. I prefer to be alone most of the time, but not this much. I'm lonely. Maybe some day if you feel up to it we can go to lunch or have a drink or something. Even if you want to go to one of the meetings one night. I can't go out with the one friend I have left cause I cannot keep up with her. She doesn't realize she is going to fast for me, and I get sick of having to say I need to sit down. Plus she wants to go to the bar all the time, lol, and I don't really like to drink. Sometimes I just wish I had someone to go to the movies with, even if it was only once a month. Someone besides my husband, who never wants to go out. I use to have the Castle Cinema right down the street before they closed down. It was a one minute walk away, and they used to have daily matinees that only cost about $2. I miss that place so much. I can't go for walks alone because my neighborhood is not so great. I get harassed by the men around here when I go out. Just 2 streets over is a really bad street where there are always shootings and lots of drugs and gangs. This used to be a nice neighborhood too. My street is pretty quiet. It's either older people or Hispanic families, and they are all pretty nice. They are very family orientated so they are always having these cook outs where they sing really loud, it's so funny.

Oops, I didn't mean to babble on and on! I hope you can find a way to enjoy your time off though. Do you like to read? I never asked you your age, huh? I'm 27- 28 in June. Everyone says I seem a lot older though, whether that is good or bad, who knows, lol. Well, back to the posts!

~*Kerrie*~

Re: Well folks... I called in sick./Tigger

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

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[Guest guest]

Re: Well folks... I called in sick./Tigger

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.10.4 - Release Date: 4-27-2005

[Guest guest]

Thanks for your wonderful post. I sure do understand about the day in and day out being the same. I'm hoping so much that this fibro isn't the only reason I'm having trouble working. I don't know what I would do... I have no one.

Dr. Rafal was o.k. I think it's an awful lot of work... it sounded too overwhelming to me. He has a whole program and I've talked to some for whom it didn't really work.

Do you live in N. Prov? I would love to meet someday for a lunch or something. Where is your fibro group?

You're routine sounds like mine, get up.. take a nap... watch TV... take a nap.... oh, I forgot... lots of bathroom trips. That's a whole other problem right now.

I hope this flare passes.

Tigger

Re: Well folks... I called in sick./Tigger

Kerrie, I saw Dr. Rafel once. I live in Westerly and he's in field. I would had to take time off work (precious time as it is... I do everything to remain working), and I'd have to go 3-4 times a week. There is no way I could handle the drive.

I know what you're saying though. I never thought it would get worse. I thought after a few months I'd be better... like you said, possibly with the help of medication, but if I can function that's fine.

Right now they've told me to go home from work because I can't cut it right now.... they figure it's from the surgery I had... truthfully, most of it's fibro related. I've got another couple of weeks to "rest up". Then when I do go back to work, I work, come home feed the dogs let them out, and fall asleep... sometimes I don't even remember to bring the dogs back in until it's 2:00a.m. and I hear them barking at something. Weekends are the same... sleep and little movement. It a pretty crappy life.

Tigger

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

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[Guest guest]

Dear Kerrie,

I'm sorry things have been going so badly for you. I know the frustration

of SSDI. I applied a year ago (early April), have been turned down twice,

and today got a letter letting me know my hearing will be in June. I was

so very surprised, because my lawyer warned me at the beginning that in

Tennessee it takes upwards of 3 years to even get a hearing. I've had so

many people tell me it will take me a couple of years to get to the

hearing phase AFTER I've received my last denial.

I'm in a tizzy, hoping that this is a good sign. At least now I have

something to shoot for. I've got to get busy and plan out what I need to

do. My lawyer wants to conference call with me in May; I guess then

she'll let me know what I need to do then, but it's like being given a

box, all wrapped with pretty paper & bows & a huge tag that says

" Do NOT open until Christmas " . I just started with a new

psychiatrist, and he charges for just about everything....like Jaana's

doc, he charges for phone calls....$20 for a couple of minutes, $30 for a

" medium length " call, and $40 for anything longer. If you phone

in for a prescription, you get charged the full price of an office visit

($170) and there are rates for everything else they can think of, and

these extras are not covered by my insurance. I told my neuro that I

didn't like him, and she said he's supposed to be one of the best pdocs

in Nashville, very respected and she liked him herself. With my hearing

coming up soon, I guess I need to put up with him at least until it's

over. I do think, however, that I made a big mistake by waiting so long

to see another pdoc, especially because my main " complaint " is

BiPolar Disorder with Major Depression as well as a few other extras, and

it'll probably seem odd to the judge that I've gone so long without

psychiatric care. But, the time just slipped by so quickly, especially

with all the sleeping I've been doing.

Well, I'm gonna go offline for now, my husband is driving me crazy, and I

can't put up with him much longer. If I don't leave the room, he's going

to make me lose what little control I have left, and it won't be

pretty!

Good luck with your SSDI case, and I hope you get your hearing

soon.

{{{{{HUGS}}}}}

cyn

At 05:44 PM 4/28/2005 -0400, Kerrie wrote:

There should be something

people in your position can do. What doesn't make any sense is that

say you stopped working because you could not even sit up. Even if you

can get SSDI, by the time you would finally get it, you'd be lucky if you

had a cardboard box to live in. It will make 2 years since I first

applied in October

cyn

FSG Mod

Fibromyalgia_Support_Group

clmerritt@...

YIM ID cynmerritt

ICQ ID 252-416-778

Win Messenger clmerritt@...

AOL IM mickeymacklot's

[Guest guest]

Wow, good luck with the hearing. I haven't gotten my second denial yet, but I am certain I'll be denied again. It will be a miracle if I don't. I am scared to death of going to a hearing. I totally choke up at things like that. If I went to the hearing and went through all that and they didn't believe me, I think I would be devastated. What happens if you get denied after a hearing? Can you still appeal it?

This guy I met online who has fibro told me that there was some law passed that said doctors and whatnot could NOT tell someone that fibro/CFS is in their heads. Has anyone else heard about this? I thought that was awesome, but it seems like no one has ever heard of such a thing. Someone in my RI fibro support group went to the hearing and was denied because the judge did not believe that fibro is a real illness. I am so scared of that happening to me. I could even get the same judge if I have a hearing! I'm in RI too. So if there is really some new law that says they can't say it's not real, how could the judge do that? Doesn't make sense. I don't know if this guy was BSing me or what.

I sincerely hope you get SSDI. Every time I hear about another person getting it, it feels like another small victory to me. Please let me know what happens at the hearing and what they do there. If I end up going I'll need all the help I can get.

Take care-

~*Kerrie*~

--

I submit to you that if a man hasn't discovered something he will die for, he isn't fit to live. -- Luther King Jr., Speech in Detroit, June 23, 1963

Re: Well folks... I called in sick./Tigger

Dear Kerrie,I'm sorry things have been going so badly for you. I know the frustration of SSDI. I applied a year ago (early April), have been turned down twice, and today got a letter letting me know my hearing will be in June. I was so very surprised, because my lawyer warned me at the beginning that in Tennessee it takes upwards of 3 years to even get a hearing. I've had so many people tell me it will take me a couple of years to get to the hearing phase AFTER I've received my last denial.I'm in a tizzy, hoping that this is a good sign. At least now I have something to shoot for. I've got to get busy and plan out what I need to do. My lawyer wants to conference call with me in May; I guess then she'll let me know what I need to do then, but it's like being given a box, all wrapped with pretty paper & bows & a huge tag that says "Do NOT open until Christmas". I just started with a new psychiatrist, and he charges for just about everything....like Jaana's doc, he charges for phone calls....$20 for a couple of minutes, $30 for a "medium length" call, and $40 for anything longer. If you phone in for a prescription, you get charged the full price of an office visit ($170) and there are rates for everything else they can think of, and these extras are not covered by my insurance. I told my neuro that I didn't like him, and she said he's supposed to be one of the best pdocs in Nashville, very respected and she liked him herself. With my hearing coming up soon, I guess I need to put up with him at least until it's over. I do think, however, that I made a big mistake by waiting so long to see another pdoc, especially because my main "complaint" is BiPolar Disorder with Major Depression as well as a few other extras, and it'll probably seem odd to the judge that I've gone so long without psychiatric care. But, the time just slipped by so quickly, especially with all the sleeping I've been doing. Well, I'm gonna go offline for now, my husband is driving me crazy, and I can't put up with him much longer. If I don't leave the room, he's going to make me lose what little control I have left, and it won't be pretty!Good luck with your SSDI case, and I hope you get your hearing soon.{{{{{HUGS}}}}}cyn

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