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tgal
08-05-2011, 08:09 AM
As many of you know I fought the "doctor fight " for well over a year."it is classic ""lupus" to "no it is axle lupus because the blood work isn't right" and then the seizures started and when I asked if it was now SLE since there was organ damage they said "no, the seizures have nothing to do with the lupus ( yea.... Right).

Anyway, I am currently in the hospital due to chest pain however they are refusing to give me my plaquinel and steroids because the doctor put those on hold. So it qppears that I am going to have to have to do the "you don't have the blood work to have lupus" fight again and I really not up to it today!

Sorry for the language but this seriously pisses me off

steve.b
08-05-2011, 08:18 AM
thinking of you.
hold in there, your battle is with the desease, not the doctor.

they do not understand.

JuliaL
08-05-2011, 08:33 AM
Oh no! I am so sorry, Tgal! I hate that you're having to deal with this when you're not feeling well and I hate doctors who think they need to come in and reinvent the wheel. It puts people like us in jeopardy!

Do you have an advocate who can set them straight so you can concentrate on taking care of yourself and getting better? I'll be praying!

sharpiessave
08-05-2011, 09:32 AM
How could they?!?!?!?! I'm completely bewildered. . .

They're doctors! Don't they know that plaquenil and prednisone can't just be stopped? Especially not on the doses you've been taking. TAPER!! That's what we've heard a million times. I mean seriously, what the earth?!?

I'm so sorry you're having to deal with this ridiculousness on top of chest pain. For the rest of the day I'm going to be daydreaming about driving to Texas all full of rage and vinegar and giving those docs a stern talking to. I might have the voice of 12 year old boy, but I cuss like a sailor, and I can be scary when it's called for.

Whew, ok. . . had to get that out of my system. Deep breaths. . .

You can do this. Maybe that year of fighting gave you the knowledge and skills that are going to be required to win this battle. You must be exhausted, but you're so hardcore I'm 100% sure you have the strength to win this one.

panda_lupo
08-05-2011, 09:42 AM
Thinking of you! and sending my well wishes and fiestyness to fight the doctors!!!!

tgal
08-05-2011, 09:57 AM
Thanks everyone but it got worse. The lady from financial aide came up wanting 5000 dollars as a down payment since I have no insurance. When I told her I didnt have that she informed me that this is a private hospital and they don't do "charity cases". she told me that she would go get a promissory note for me to sign and I refused. She then began to explain that the Er was one thing but now I am in the hospital and stable. She handed me a paper with just the hospital bill so falr (13,000) and that it will keep going up. By the end if the discussion.I was crying and pressing the button for the nurse as she walked to the door, her back to me and said ' so you leaving now... Right"


The nurses were wonderful but when the cardiologist camE in he told me tthat everything looks ok but I need to come to his office and get a stress test . When I told him i had no insurance and coudnt afford it he said "well maybe tey going to your old one. He might be able to help you" wow.
Sorry for all of the errors in this post. 1 I am on my phone 2 I don't have my glasses and 3 I am doing something I selldome do... I just can't stop crying ( who knows wham may be typed here because I can't see the auto correct or what it is really saying


Thanks for listening... I reLly needed it

tgal
08-05-2011, 11:04 AM
Lol for everyone that is keeping score... We finally scored! My niece came in and I was upset about my mess and she said "didn't you bring all your meds with you'? yepppp I sure did! since I am going home later I went ahead and took them myself!

sharpiessave
08-05-2011, 11:46 AM
Lol for everyone that is keeping score... We finally scored! My niece came in and I was upset about my mess and she said "didn't you bring all your meds with you'? yepppp I sure did! since I am going home later I went ahead and took them myself!

Hooray for our side!! That's exactly what I would have done. How are you feeling now?

lovedbyHim
08-05-2011, 12:14 PM
Omgosh your story is horrible! This is one crazy ignorant world we live in! You poor girl. The ER should have transported you to another hospital if the private one wouldn't accept you. I don't get this horror.

ruziska
08-05-2011, 12:28 PM
ok sharpiessave, I'll pick you up on the way! We'll go to Texas and kick doctor butts! How DARE they mess with a lupie! Don't worry tgal, the cavalry is on the way!!! (and since we are daydreaming, I want it noted that we'll be arriving in a Lamborghini Countach. Gotta make an entrance ya know!)

magistramarla
08-05-2011, 12:36 PM
Mari,
It just doesn't seem right for hospital employees to be making a patient who is there for chest pains feel even worse. What if the upset that she caused set off an actual heart attack? It seems to me that the hospital would be liable for that. I hope that you can soon get some decent care and answers.
Let us know how you are doing later.
Hugs,
Marla

sharpiessave
08-05-2011, 12:38 PM
Yeah! And we'll bring perfect weather, too. =)

tgal
08-05-2011, 01:03 PM
Yeah! And we'll bring perfect weather, too. =)

I'll take it! Another 100 plus temp here...the good news is that I am about to go home

lacey50
08-05-2011, 01:56 PM
Omg, i can't believe they would treat you like that. I hope they don't expect you to pay that bill. I'm so glad you had your own meds and are ok to go home. You are okay, right?? Take care and keep us updated.

JuliaL
08-05-2011, 02:36 PM
Unbelievable! Well, no, strike that -- it's a prime, horrible example of how messed up our system is! I'm so sorry you had to deal with the tacky, uncaring financial people. And GOOD FOR YOU for not signing that promissary note! I'm glad you're going home and I hope you feel much better soon!

tgal
08-05-2011, 03:13 PM
Hi everyone,

I am home now and I wanted to thank ya'll for letting me vent today. It was just a bit overwhelming and I knew all of you would understand. Hope everyone is doing well. I am surely glad to be home

mdawncooper
08-05-2011, 03:28 PM
I'm in Texas and I want you to message me later and tell me which hospital because I definitely don't want to end up there. Praying peace for you because as much stress as you have been through that is probably making the chest pains worse.

Hang in there!
Mel

nicolehinkel
08-05-2011, 06:30 PM
I am so sorry for your troubles. This world is funny, well the hospital and insurance thing is funny. Last year I lost my insurance because I lost my job because of lyme disease and now I know also lupus flare ups. Well I wasn't working but my husband who is self employed was just paying the bills and I try to get medicaid just for my medical treatment and because at the end of the month one of my husband's suppliers hadn't cashed a check, I was denied. Yeah, lets deny the coverage so I can get sicker and will be less likely to work and will need more help from the government. But you have those that are doing everything they shouldn't and taking advantage of our world and they get help.

Good luck, Hugs.

running girl
08-05-2011, 06:49 PM
This thread makes me so sad. Thankfully I am still in the emerging phase of lupus and have not had to endure a hospital visit. I'm so sorry to hear how you had to deal with such a lack of compassion, on top of being sick and scared.

The cost of medical care shocks me. I live in Canada and have never had to consider it. I can't imagine the stress.

I hope you feel better soon.

tgal
08-05-2011, 07:15 PM
Ya know, what happened today was absolutely horrible and I have to say that I have never been made to feel so worthless in my lifetime. While the finance woman was outwardly horrible looking back at it I became saddened by the Cardiologist. He had the staff run almost all the tests on me and he came to see me right after W***CH lady so it didn't hit me right away but what happened with him made me sad. He walked in and told me that everything looked OK on the tests today however we need to find out if I have a blood clot somewhere (especially since I have that lovely clotting problem) and we have to do a stress test. He then told me to make an appointment with his office to do the stress test. I told him that I have no insurance and can't afford that. You would think that he would offer suggestions on how we could get it done since he was so adamant about me having one but he didn't do that. He looked at me and kind of shrugged before saying "Well, maybe you can go to one of your old doctors or at that hospital in Tomball to get it done because they may take people like you".

People like me. What does that mean "People like me". People who are ill and need help? People who lost everything because of a medical condition that too 2 years to diagnosed with? Ohh maybe "people like me" who worked my entire life just to be told that, on disability, I make too much money (HA) to fit in the indigent category so I can't have any medical care until Oct of 2012. No, what he meant was very clear by his body language, "People like me" meant people hadn't planned their life well enough so they are in this situation with no health insurance. Surely, had I been saving for a rainy day rainy day and would never be in this position.

People like me. I will tell you who "people like me" really are. We are strong, ill people that have put up with too much bulls**t by "people like you" .
"people like you" think that all the years of schooling have made you an expert of all things. "People like me" are kind, caring people that pick up the souls of the other people that you have stepped on your way up to sainthood. "people like me" are what you wish you could be.

People like you, however, go out to lunch with "people like Financial woman" and feel like equals doing it. "people like me" come to WHL and help those harmed by an encounter with "people like you"

exhales deeply. OK, I am done now. I have it all out of my system. Thanks to each and every one of you for your help today. I do adore all of the other "people like me" that have made a home here at WHL

steve.b
08-05-2011, 08:02 PM
i am in australia, so i do not know the american system..........
but is there some form of complain proccess.
the actions of the financial lady, and the doctor are far from acceptable.

someone needs to change their attutude before they kill someone by there inaction.

JuliaL
08-05-2011, 09:00 PM
Ya know, what happened today was absolutely horrible and I have to say that I have never been made to feel so worthless in my lifetime. While the finance woman was outwardly horrible looking back at it I became saddened by the Cardiologist. He had the staff run almost all the tests on me and he came to see me right after W***CH lady so it didn't hit me right away but what happened with him made me sad. He walked in and told me that everything looked OK on the tests today however we need to find out if I have a blood clot somewhere (especially since I have that lovely clotting problem) and we have to do a stress test. He then told me to make an appointment with his office to do the stress test. I told him that I have no insurance and can't afford that. You would think that he would offer suggestions on how we could get it done since he was so adamant about me having one but he didn't do that. He looked at me and kind of shrugged before saying "Well, maybe you can go to one of your old doctors or at that hospital in Tomball to get it done because they may take people like you".

People like me. What does that mean "People like me". People who are ill and need help? People who lost everything because of a medical condition that too 2 years to diagnosed with? Ohh maybe "people like me" who worked my entire life just to be told that, on disability, I make too much money (HA) to fit in the indigent category so I can't have any medical care until Oct of 2012. No, what he meant was very clear by his body language, "People like me" meant people hadn't planned their life well enough so they are in this situation with no health insurance. Surely, had I been saving for a rainy day rainy day and would never be in this position.

People like me. I will tell you who "people like me" really are. We are strong, ill people that have put up with too much bulls**t by "people like you" .
"people like you" think that all the years of schooling have made you an expert of all things. "People like me" are kind, caring people that pick up the souls of the other people that you have stepped on your way up to sainthood. "people like me" are what you wish you could be.

People like you, however, go out to lunch with "people like Financial woman" and feel like equals doing it. "people like me" come to WHL and help those harmed by an encounter with "people like you"

exhales deeply. OK, I am done now. I have it all out of my system. Thanks to each and every one of you for your help today. I do adore all of the other "people like me" that have made a home here at WHL

Oh no. Are you trapped in that 2 1/2 year wait for Medicare after you've been approved for SSD? If so, I unfortunately know the drill. I was one of the few who was approved for SSD just 10 weeks after I applied (yep, I was in a very bad way and had tons of medical documentation to prove it) so I had to wait over 2 years for Medicare. I kept the insurance I had with the school district through COBRA for as long as I could but I had to pay the $400/month premium myself, plus all of the copays and out-of-pocket expenses. I ran out of money several months before Medicare kicked in.


Texas is not a good place to have this happen, either. You have to have nothing to get any help and, yeah, the SSD amount is considered "too high." Since I have home health off and on, I had the HH social worker helping me to find some sort of medical assistance. It just didn't exist. I even called the governor's office begging for help. To his credit, his office did hook me up with an ombudsman for health care to try to find assistance for me. She was super-nice and very frustrated when she had to tell me there was nothing. She told me that it makes her so angry that "people like us" fall through the cracks -- and there are millions of us!

So, here's what I figured out on my own -- go to the non-profit hospital systems. Set up an appointment with their resource assistance office. We have a Baptist hospital here that has been absolutely wonderful to me. Even now that I have Medicare, they still signed me up for their assistance program that covers the 20 percent that Medicare doesn't pay and any other copays. Have you tried St. Luke's Episcopal Health System? I've heard great things about them helping people.

These "for profit" places that have no compassion for "people like us" will get what's coming to them. I truly believe that. It's beyond sad when people in the healing professions can't spare any compassion or even courtesy to those who don't have a lot of money and Cadillac insurance. Even if I did have a lot of money, I wouldn't WANT to pay people like that to care for me!

Hang in there, hon. I know it's frustrating, scary, and so unfair but you will win and you will be all the stronger for it!

tgal
08-05-2011, 09:12 PM
Oh no. Are you trapped in that 2 1/2 year wait for Medicare after you've been approved for SSD? If so, I unfortunately know the drill. I was one of the few who was approved for SSD just 10 weeks after I applied (yep, I was in a very bad way and had tons of medical documentation to prove it) so I had to wait over 2 years for Medicare. I kept the insurance I had with the school district through COBRA for as long as I could but I had to pay the $400/month premium myself, plus all of the copays and out-of-pocket expenses. I ran out of money several months before Medicare kicked in.


Texas is not a good place to have this happen, either. You have to have nothing to get any help and, yeah, the SSD amount is considered "too high." Since I have home health off and on, I had the HH social worker helping me to find some sort of medical assistance. It just didn't exist. I even called the governor's office begging for help. To his credit, his office did hook me up with an ombudsman for health care to try to find assistance for me. She was super-nice and very frustrated when she had to tell me there was nothing. She told me that it makes her so angry that "people like us" fall through the cracks -- and there are millions of us!

So, here's what I figured out on my own -- go to the non-profit hospital systems. Set up an appointment with their resource assistance office. We have a Baptist hospital here that has been absolutely wonderful to me. Even now that I have Medicare, they still signed me up for their assistance program that covers the 20 percent that Medicare doesn't pay and any other copays. Have you tried St. Luke's Episcopal Health System? I've heard great things about them helping people.

These "for profit" places that have no compassion for "people like us" will get what's coming to them. I truly believe that. It's beyond sad when people in the healing professions can't spare any compassion or even courtesy to those who don't have a lot of money and Cadillac insurance. Even if I did have a lot of money, I wouldn't WANT to pay people like that to care for me!

Hang in there, hon. I know it's frustrating, scary, and so unfair but you will win and you will be all the stronger for it!

That is wonderful advice but I actually live in a small town and I have no hospitals, or access to them, in my county. I have spent the last year trying to find one that would work with me but basically it is the same all the way around. Some are nicer then others but I am out of luck in trying to find "local"

Thanks for trying though! I am going to try calling some places in Harris County (Houston) to see if they will accept me but it isn't looking good. I will let you know what happens. Thank you!

JuliaL
08-05-2011, 09:51 PM
Tgal,
Have you applied with DADS yet? It's the Texas Department of Aging and Disability Services. I'm sure you would qualify and there is a waiting list for services but once they get you on the programs, they're SO helpful. They pay for me to have housekeeping and attendant services and I'm on a waiting list for Medicaid through them. (They use different criteria than HHS so you qualify because you're disabled, not because you're indigent.)

If you haven't signed up yet, do. It's a good resource and they'll find services to help you no matter where you live.

sharpiessave
08-05-2011, 09:51 PM
Ok, now I'm just mad. I don't know what I was before (bewildered, maybe) but now I'm just full of mad. It takes a special kind of idiocy that they only teach in schools you have to pay hundreds of thousands of dollars to attend to even THINK about looking down your nose at my Tgal.

Lady, I've only known you a short while, but in that time I've been awed by you. You're a teacher, guidance counsiler, cheerleader, and friend to hundreds of people who've never even met you. You're one of our constants here, one of the people we can absolutely always count on to just be there to listen, if nothing else.

Stupid, stupid doctor, making you feel less than amazing. If I wasn't such a pacifist I'd wanna punch him in the throat. I don't know why I picked his throat, but I'm sticking with it.

Throat Puncher would also be an ok band name.

BonusMom
08-05-2011, 11:42 PM
I'm late to the party tgal, but I'm horrified at how you were treated at the "private" hospital. Obviously, patient care isn't care isn't their number one priority.

I am relieved to hear that you ate feeling better, in spite of their treatment. Poo-poo heads!

steve.b
08-06-2011, 01:42 AM
....... Poo-poo heads!

i had to quote this.
well said.

tgal
08-06-2011, 08:23 AM
Tgal,
Have you applied with DADS yet? It's the Texas Department of Aging and Disability Services. I'm sure you would qualify and there is a waiting list for services but once they get you on the programs, they're SO helpful. They pay for me to have housekeeping and attendant services and I'm on a waiting list for Medicaid through them. (They use different criteria than HHS so you qualify because you're disabled, not because you're indigent.)

If you haven't signed up yet, do. It's a good resource and they'll find services to help you no matter where you live.

Would it be impolite to hug you? I have NEVER heard of them! I will try anything and have searched and searched and searched but I thought I was out of places to go. THANK YOU!

tgal
08-06-2011, 08:45 AM
Ok, now I'm just mad. I don't know what I was before (bewildered, maybe) but now I'm just full of mad. It takes a special kind of idiocy that they only teach in schools you have to pay hundreds of thousands of dollars to attend to even THINK about looking down your nose at my Tgal.

Lady, I've only known you a short while, but in that time I've been awed by you. You're a teacher, guidance counsiler, cheerleader, and friend to hundreds of people who've never even met you. You're one of our constants here, one of the people we can absolutely always count on to just be there to listen, if nothing else.

Stupid, stupid doctor, making you feel less than amazing. If I wasn't such a pacifist I'd wanna punch him in the throat. I don't know why I picked his throat, but I'm sticking with it.

Throat Puncher would also be an ok band name.

You are so very sweet (and very good for my ego! LOL I don't do anything different then everyone here does; anything different then you. There is something about this illness that begs for understanding and this place gives us that. I see people here every day helping someone when I know that he/she isn't well themselves. I believe that it helps us to help others like us. So often we get lost in our own pain and despair that helping someone else the is the only way that we can pull ourselves out of the dark place we are sitting in and start to see some of the clouds above us starting to part.

Thank you again for being so kind. It means a lot to me

KCat
08-06-2011, 08:58 AM
Sickening. I'm glad you're out of there and hope you can find help through DADS. I'd never heard of it either. Good luck! I too was wondering which hospital this is. If it's near the north side, odds are I won't ever be in a position to use it since I'm down in League City. But, man. Doesn't sound like a place I'd want any of my loved ones to end up. I'm sick of "health care professionals" who treat us like cash cows and when we don't produce we're just a burden on them.

Gizmo
08-06-2011, 10:05 AM
Mari, I just saw your thread and I am joining the many friends you have here who are outraged and distraught that you were treated so badly. The thought of being without insurance terrifies me, it leaves you with no options. Have you considered telling the cardiologist what you told us? It was stated so well, and hopefully reading those words would give him a kick in the butt to find his compassion and respect again (if he ever had any).

I hope you are doing better and are able to get help through DADS. I'll be thinking about you!

tgal
08-06-2011, 10:23 AM
Thanks everyone but it got worse. The lady from financial aide came up wanting 5000 dollars as a down payment since I have no insurance. When I told her I didnt have that she informed me that this is a private hospital and they don't do "charity cases". she told me that she would go get a promissory note for me to sign and I refused. She then began to explain that the Er was one thing but now I am in the hospital and stable. She handed me a paper with just the hospital bill so falr (13,000) and that it will keep going up. By the end if the discussion.I was crying and pressing the button for the nurse as she walked to the door, her back to me and said ' so you leaving now... Right"


The nurses were wonderful but when the cardiologist camE in he told me tthat everything looks ok but I need to come to his office and get a stress test . When I told him i had no insurance and coudnt afford it he said "well maybe tey going to your old one. He might be able to help you" wow.
Sorry for all of the errors in this post. 1 I am on my phone 2 I don't have my glasses and 3 I am doing something I selldome do... I just can't stop crying ( who knows wham may be typed here because I can't see the auto correct or what it is really saying


Thanks for listening... I reLly needed it

LOL I am glad ya'll were able to understand what I was saying in my first few posts. While I love my IPhone I suck at typing on it! When my daughter can't spell or speak correctly I always get on her. Someone needed to get on to me.. dang that was bad!! SO SORRY!

tgal
08-06-2011, 10:30 AM
I am so sorry for your troubles. This world is funny, well the hospital and insurance thing is funny. Last year I lost my insurance because I lost my job because of lyme disease and now I know also lupus flare ups. Well I wasn't working but my husband who is self employed was just paying the bills and I try to get medicaid just for my medical treatment and because at the end of the month one of my husband's suppliers hadn't cashed a check, I was denied. Yeah, lets deny the coverage so I can get sicker and will be less likely to work and will need more help from the government. But you have those that are doing everything they shouldn't and taking advantage of our world and they get help.

Good luck, Hugs.

I am with you! It doesn't make sense! My heart goes out to you because I do understand.

Bonita
08-06-2011, 10:44 AM
I am so sorry Tgal for all of this that you had to go through stress is no good eithrer i wish i had some answers for you and wish that you could get doctors who understand what goes on with lupus. I am sending you a big hug and my prayers. Love Bonita

nicolehinkel
08-06-2011, 02:41 PM
Do they have a program similar in Pennsylvania?

tgal
08-06-2011, 03:58 PM
Do they have a program similar in Pennsylvania?

Sadly the state of Texas has no programs for the disabled. All we have is what the Feds give us

Elo
08-06-2011, 04:31 PM
WOW. Just...Wow.
This is the first time i've read this thread - and like everyone else, I am OUTRAGED.
Are you kidding me???
As if we didn't have to go through enough WITHOUT dealing with Poo-Poo heads like that! ESPECIALLY when you're so sick.
"Hi, so I know you're in horrible pain and so sick that you require a hospital visit, but... Poo on you, i'm going to act superior to you, because *I* Am a total poopwad who was lucky enough to not only be perfectly healthy, but also have a rich daddy who payed my way into and out of medical school, because I actually totally suck and am a poor excuse for a human being, let alone one who is meant to save lives and help take care of people. Also, I'm a complete and utter butthead, and that financial lady is so hot, the way she looks down her nose at people who need help. God, is anything more sexy than a total self centered bee yatch? Let me answer that for you - no, there is not, because i have absolutely no taste in human beings or qualities that are important. Man, I think i'm going to go see that stupid lady now and go to lunch with her and talk about how awesome we are and have beautiful, spoilt babies together, who will eventually grow up to hate us because, hey, we suck. But I won't care as long as I have my paycheck and alcohol and big fancy yacht, and i can rub it in other peoples faces that i'm sooo rich."


*breathes*.

sorry.
I may have gotten carried away.


I'm glad you're feeling better though...I hope you continue to improve.. this may sound horrible, but...i never imagined that you were that sick. You're just... too happy and nice to everyone. You know? Anyways, i'm biting my tongue before i can shove my entire leg in my mouth next time.

tgal
08-06-2011, 06:19 PM
WOW. Just...Wow.
This is the first time i've read this thread - and like everyone else, I am OUTRAGED.
Are you kidding me???
As if we didn't have to go through enough WITHOUT dealing with Poo-Poo heads like that! ESPECIALLY when you're so sick.
"Hi, so I know you're in horrible pain and so sick that you require a hospital visit, but... Poo on you, i'm going to act superior to you, because *I* Am a total poopwad who was lucky enough to not only be perfectly healthy, but also have a rich daddy who payed my way into and out of medical school, because I actually totally suck and am a poor excuse for a human being, let alone one who is meant to save lives and help take care of people. Also, I'm a complete and utter butthead, and that financial lady is so hot, the way she looks down her nose at people who need help. God, is anything more sexy than a total self centered bee yatch? Let me answer that for you - no, there is not, because i have absolutely no taste in human beings or qualities that are important. Man, I think i'm going to go see that stupid lady now and go to lunch with her and talk about how awesome we are and have beautiful, spoilt babies together, who will eventually grow up to hate us because, hey, we suck. But I won't care as long as I have my paycheck and alcohol and big fancy yacht, and i can rub it in other peoples faces that i'm sooo rich."


*breathes*.

sorry.
I may have gotten carried away.


I'm glad you're feeling better though...I hope you continue to improve.. this may sound horrible, but...i never imagined that you were that sick. You're just... too happy and nice to everyone. You know? Anyways, i'm biting my tongue before i can shove my entire leg in my mouth next time.

No need to feel bad . It is funny that you brought it up today though. When my daughter came home from her brother's house she told me that his wife had told her "I just forget how much ya'll go through because ya'll are always there to help everyone else".

It did make me think a little when this was said twice in one day. Maybe the reason that everyone doesn't think about me being ill is because I hide it so well. I mean if in a website that is geared for people with the same thing as I have, i can come across as not being that ill, then maybe I have to take some of the blame on myself when I bitch about people in my real life forgetting. I hide from my real world when I can't string together an entire word much less a sentence. I can't drive now, not only because of seizures but I get lost in a small town that I grew up in. Honestly I live in a small 2 bedroom house and I have gotten lost in it before. On here is different. I can take the time I need to string together thoughts and ideas without sounding like Dustin Huffmon in Rain Man. (10 minutes to Whoppner!) :0

I am happy that I don't come across as someone who just lives my disease. There is so much more in life that I NEVER want to be that person. I want to be the kind, friendly, loving person that it is my goal to be. One of the reasons that I love this place is because we all understand each other. I can feel helpful to someone on a day I can't get out of bed or when I am too tired to speak words (Does anyone else do that? Seriously. It is often easier to type then to put words together on the phone).

So, Elo, after weighing both sides of your comment I have to say that I find it a huge compliment! It means that I am being honest to who I am and that this horrible disease has not changed that part of me. I really needed to hear that today, Elo. Thank you so much!

JuliaL
08-06-2011, 07:11 PM
Would it be impolite to hug you? I have NEVER heard of them! I will try anything and have searched and searched and searched but I thought I was out of places to go. THANK YOU!

Hugs always welcome! :) Just glad I could help! As I said, you may have to do the waiting list thing because of the budget cuts but it's a very helpful agency. They let you know about other programs, too, like the free winterization and such.

magistramarla
08-06-2011, 07:25 PM
I hide from my real world when I can't string together an entire word much less a sentence.

I am happy that I don't come across as someone who just lives my disease. There is so much more in life that I NEVER want to be that person. I want to be the kind, friendly, loving person that it is my goal to be. One of the reasons that I love this place is because we all understand each other. I can feel helpful to someone on a day I can't get out of bed or when I am too tired to speak words (Does anyone else do that? Seriously. It is often easier to type then to put words together on the phone).

Mari,
I really get what you are saying. As you know, I'm a pretty outgoing person and I'm involved in a lot, but when my Spasmodic Dysphonia is bad, it's a lot easier to communicate here than in the outside world. I feel so awful when I can't make people hear or understand me. Here, I can be my old verbose self.
Hope you are better tonight!
Hugs,
Marla

steve.b
08-06-2011, 08:22 PM
third attempt to reply to this


.... then maybe I have to take some of the blame on myself ... On here is different. I can take the time I need to string together thoughts and ideas without sounding like Dustin Huffmon in Rain Man. (10 minutes to Whoppner!) :0 ...


[B]NO [B] it is not your fault. do not take any blame.

you do on here what i do......
you think twice...write once....and then still ammend the post.

nicolehinkel
08-08-2011, 02:49 PM
Oh my goodness. I so understand it being easier to type then put words together on the phone and not always because I don't know what I want to say but because I don't want to deal with the other end of the conversation. People don't "get" the disease. Yes they might know who have this or that but unless you have it you can't understand. Even having it since it affects everyone different sometimes others don't totally understand, the great thing about this group is we all understand that and even know we may not physically feel what someone else is feeling we know the frustration.

Elo
08-08-2011, 03:50 PM
I somehow seemed to lose this thread temporarily, but i've found it again! And I must say, I agree with Steve. (Well yeah, who wouldn't :P)
But I mean, it's not your fault at all. Real life is much more different from online, and there's absolutely NO reason you should blame yourself. I did mean it a bit as a compliment - because you are such a wonderful bright person, and such a cheerleader for everyone on this site. (But not one of those really annoying peppy ones who only eat lettuce and OHMIGOD, like, totally have to go to the mall, like NAO.)
Ehem. Sorry. So...much...pep...can be so annoying. GAH! I'm going off track. Err...my point is - you do so much supporting and being happy and fun all the time, that I didn't give as much thought to your illness, which is why i was apologizing.
Is this coming out right? I don't think so. Um. Yeah.

HEY LOOK! A DISTRACTION!!! IT'S RIGHT BEHIND YOU I SWEAR!!!!!
*runs away*

tgal
08-08-2011, 08:33 PM
third attempt to reply to this






[B]NO [B] it is not your fault. do not take any blame.

you do on here what i do......
you think twice...write once....and then still ammend the post.

LOL I DO!!! Even after I post it I go back and change it almost every time! LOL

tgal
08-08-2011, 08:35 PM
I somehow seemed to lose this thread temporarily, but i've found it again! And I must say, I agree with Steve. (Well yeah, who wouldn't :P)
But I mean, it's not your fault at all. Real life is much more different from online, and there's absolutely NO reason you should blame yourself. I did mean it a bit as a compliment - because you are such a wonderful bright person, and such a cheerleader for everyone on this site. (But not one of those really annoying peppy ones who only eat lettuce and OHMIGOD, like, totally have to go to the mall, like NAO.)
Ehem. Sorry. So...much...pep...can be so annoying. GAH! I'm going off track. Err...my point is - you do so much supporting and being happy and fun all the time, that I didn't give as much thought to your illness, which is why i was apologizing.
Is this coming out right? I don't think so. Um. Yeah.

HEY LOOK! A DISTRACTION!!! IT'S RIGHT BEHIND YOU I SWEAR!!!!!
*runs away*

LOL Yes, I understand exactly what you meant and thank you for it!