Re: () (1) Misc., (2) What's the use??? Why should I bother???

[Guest guest]

,

I rarely get a chance to read let alone respond to any of the emails lately and I'm so glad I, for some reason, was pulled to read yours. First off, I'm pretty new to the group but not new to sarc. I was diagnosed in 2003, but now know I've had sarc since the mid to late 90's. Anyway, I'm far from being a medical advice person, but the vibration thing you describe and the problems associated with it happened to me sometimes when I was taking Neurontin a few years back. I now take Topamax. I took Neurontin and Keppra for awhile but had too many problems and weight gain. This may not be the case for you, but ask your doc, because it DID cause those problems for me. As soon as I switched to Topamax (which many people can't handle but I can) everything stopped. The thing I wanted to address the most with you is that you are NOT worthless. you are worth so much. I don't know you, but I see your name on the posts and know that you are a great person who got a horrible disease like the rest of us and we are all suffering and it stinks. I am so sorry you are so depressed. I am too sometimes. I get up every day for my 3 boys and my husband, whom I know this is hard on. We all have a reason for being here. Please don't give up or give in to this thing. I know it's hard, but you're worth it. Do you take an anti-depressant? I do and I'm sure many of us do. I take Cymbalta and it also works with the neuro side affects of the sarc also! I don't know your personal situation (single, married, kids, etc.) but whatever it is, I bet there are people who love you out there and would care that you are hurting. I care.

And as for SSDI, I'm in the same boat. Can't get it because of the points in the past 10 years. I have many points before that, but not the past 10 years. Really stinks, because my family REALLY needs my income also. We're financially going down the drain also. You're not alone. Please try and have a better day. I'm going to thank God today for another day of life and that I chose to read your email this morning. Please know that you will NEVER be worthless . I've been there before many times and am determined never again.

Diane in TX (former Michigander)

(1) Misc., (2) What's the use??? Why should I bother???

Hello,

(1) A assortment of various things I just put altogether in lump sum sorta of speaking. Rose, I came across something that you very well be interested in because of the fact you were nurse and a midwife working in this type of employment. I don't have this here with me now. I'll find that and write about that later this week. I was in a hurry to come over this library and I forgot to get this information. Speaking of the library, this Wyoming City Library is open now on Sundays, 1 p.m. to 5 p.m. now that the kids are back in the school year. During the summer months, all the metro city libraries are closed.

Apartment maintenance & apartment cleaning update (y'all "oldies" folks remember this?). Remember our bathtup drain wouldn't empty the water out? The bathtub facet came apart from the wall? Well the apartment owner/manager finally had a repair guy come out and fixed both of these. No more emptying the bathtub of soapy used water of a stainless steel bowl of 40 to 50 times that we used to do this. Our mircowave cleaned (finally, oh really?), refridgerator somewhat clean with just damp rags, oven was never tackled that project yet. Why am I saying all this???? Just a comedy of fasicals of things to do commonly known as life's necessary to get done listings.

Tracie, this vibration of my nerves sometimes is happening deep in those ligaments, muscles, tendons, or whichever it is going on my legs between my knees and thighs. This doesn't happen all the time, but I have felt this occassionly. I'am having also unsteady balance at times like a drunk in his/her worse condition. This may be caused by that Gabinetin nerve pain pills I'am taking. Then it may be a combination of this drug and muscle weakness in my legs.

In your vast knowledge of researching about this thing called sarcoid, have you or you already know that a person can start having "precondition" of these T.I.A.'s (mini-strokes) and seizures?? I don't know what it is, but my mind is not comprehension of what is around me or what I'am doing. Again this maybe be caused by that nerve pain drug. It's a generatic of Neurotin nerve pain drug I'am talking about. What kind of neurological symptoms can a person with sarcoid have affecting the nerves internally other than pain like a sarcoid lesion on the spinal cord? I know about these "mini-strokes" and seizures in the brain, and the nerves can go bad affecting the cranal nerves, and the bladder, but what these other "parts" (like the gall bladder, liver, kidneys)?

(2) I combine all this in one e-mail just results in one long one. Well I just get to the point here. This second part of this e-mail, "What's the use??? Why should I bother???" has to do with applying for Social Security Disability Income. Lo and behold, what came in the mail this past Friday???? Social Security Statement paper from the Social Security Administration. I'll quote from page 2 of this 4 page paper statement sent to me.

Disability: "To get benefits if you become disabled right now, you need 32 credits of work, and 20 of these credits had to be earned in the last 10 years. Your record shows you do not have enough credits in the right time period."

Ther'e saying to me right now if I'am considered as disabled by doctors doesn't make a difference you cannot collect Social Security Disability Income. I'am more disabled now than even a year ago. At times I feel so weak, I wonder how can I even walk. At times I feel like I could be in a whirlpool tub 24/7 for the rest of my life. I have arthristis pain in my fingers which the finger left of my left thumb is the worst. Pain popping up in my shoulder blades, my face, my arms, amoung other places intermetenly for minutes, hours, or even days. My lungs have stablized and the lung doctor said no sarcoid active there in my lungs when I seen him in June. But rest of me seems to gradually malfunctioning.

If I don't return to work and that is a slim possibility at that situation, if I cannot get S.S.D.I. the only possible income (legal that is) is from the V.A. I'am refering to the Non Service Connected Disability Income from the Vetrean's Administration. Summary, why should I bother now and apply for S.S.D.I., when all said and done it will be denied????

Tracie, I wrote about something. I did buy a pint of rum earlier this summer but not those sleeping pills. Oh I'am not sucidal now, just more depressed. Same ol', same ol' worthless person that I always have been, now, and will be.

worthless

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[Guest guest]

Diane, I wrote this e-mail this past Sunday here at this Wyoming City Library. Like I've said before in different e-mails in the past, I don't have a computer, I don't have the funds to buy of such nor have internet service. I don't know anyone that has a computer to use as well to do this readnin' & writin' thing. This library is the closest one to where we live. It's about 1 1/4 miles away from our apartment. It's about 97% (guessing here) walking through subdivisions on sidewalks. But a person has to keep on where a few places where the tree roots raise up the sidewalk and that possibility dog pooooop stuff. I have three ways to do this, walk, ride the bus ($1.30 one way), or drive our vehicle. Sorry for getting carried away in that above paragraph. It is just sometimes I'am not able to answer questions, comments, etc. regarding what I had written or questions in general about myself because of not

having a computer at my residence. Refering to your questions. I'am a white male, 53 years old, married to Kathleen (she refers to Kathy though), and one grown up daughter, Reba, that the three of us live together. Reba is the one that is employed working at a convience store earning about $8.50 an hour. Kathy and myself are not employed. Like Kathy has said many times and I concur that it's hard on Reba to pay for basically the living expenses just to keep things the way they have been. We all don't have any investments of anykind, legal or illegal. We have this 1993 Plymouth Grand Voyager minivan with around 150,000 miles on it. This ageing dinosaur quit on Kathy Monday afternoon when out doing the paperoutes we do. She had to park this beast in Walgreen's parking lot and told the people about it. Never mind it was pouring down raining at times as well that day. We found out that it needs a timing belt, tune up, and other stuff. Only around

$800.00 to fix this beast. We don't have the "cash at hand" to buy someone else's clunker, or junkmobile, if you know what I mean. My parents may very well help out a portion of this repair costs like so many times in the past about 22 years or there abouts. All this happen with the van after we received a shutoff elecricity notice. Nothing new such as these "trival" events in our lives that hasn't happen since I got out of the U.S. Air Force in May, 1979. I was diagnois of Sarcoidosis in Janurary, 2002. I had this tingling going down my arms & legs that I know was nerve damage from March, 2002 to about August 1, 2002 and for whatever reason this stopped all by itself. It stayed that way until March, 2003 when I had stabbing/prickling, burning pain on the bottom of my feet, toes area and this area only everyday ever since that time period. I have since have this virbration going on my skin mostly on my legs but elsewhere as well

these later years. I had this virbration going on before I had started this Gabentin nerve pain drug. I was taking Carbamephinze (mispelled probility) years ago and this virbration was going on before I started taking that drug I believe. I know I have sensory nerve loss anyway. I have gained some weight back and whether that is caused by this Gabentin is anyone's guess. Sometimes I've seen this virbration of two or three places on the backside of my leg going on all at the same time in about 6 inch area with or without a vibration going on at my other leg at the same time. I have this antidepressive drug at my apartment but I haven't take much of it because it makes me nassua. I've been readnin' & writnin' here with this "Hotel" since late August, 2004. Bye now, Diane Aja wrote: , I rarely get a chance to read let alone respond to any of the emails lately and I'm so glad I, for some reason, was pulled to read yours. First off, I'm pretty new to the group but not new to sarc. I was diagnosed in 2003, but now know I've had sarc since the mid to late 90's. Anyway, I'm far from being a medical advice person, but the vibration thing you describe and the problems associated with it happened to me sometimes when I was taking Neurontin a few years back. I now take Topamax. I took Neurontin and

Keppra for awhile but had too many problems and weight gain. This may not be the case for you, but ask your doc, because it DID cause those problems for me. As soon as I switched to Topamax (which many people can't handle but I can) everything stopped. The thing I wanted to address the most with you is that you are NOT worthless. you are worth so much. I don't know you, but I see your name on the posts and know that you are a great person who got a horrible disease like the rest of us and we are all suffering and it stinks. I am so sorry you are so depressed. I am too sometimes. I get up every day for my 3 boys and my husband, whom I know this is hard on. We all have a reason for being here. Please don't give up or give in to this thing. I know it's hard, but you're worth it. Do you take an anti-depressant? I do and I'm sure many of us do. I take Cymbalta and it also works with the

neuro side affects of the sarc also! I don't know your personal situation (single, married, kids, etc.) but whatever it is, I bet there are people who love you out there and would care that you are hurting. I care. And as for SSDI, I'm in the same boat. Can't get it because of the points in the past 10 years. I have many points before that, but not the past 10 years. Really stinks, because my family REALLY needs my income also. We're financially going down the drain also. You're not alone. Please try and have a better day. I'm going to thank God today for another day of life and that I chose to read your email this morning. Please know that you will NEVER be worthless . I've been there before many times and am determined never again. Diane in TX (former Michigander) (1) Misc., (2) What's the use??? Why should I bother??? Hello, (1) A assortment of various things I just put altogether in lump sum sorta of

speaking. Rose, I came across something that you very well be interested in because of the fact you were nurse and a midwife working in this type of employment. I don't have this here with me now. I'll find that and write about that later this week. I was in a hurry to come over this library and I forgot to get this information. Speaking of the library, this Wyoming City Library is open now on Sundays, 1 p.m. to 5 p.m. now that the kids are back in the school year. During the summer months, all the metro city libraries are closed. Apartment maintenance & apartment cleaning update (y'all "oldies" folks remember this?). Remember our bathtup drain wouldn't empty the water out? The bathtub facet came apart from the wall? Well the apartment owner/manager finally had a repair guy come out and fixed both of these. No more emptying the bathtub of soapy used water of a stainless steel bowl of 40 to 50 times that we used to do this. Our mircowave cleaned

(finally, oh really?), refridgerator somewhat clean with just damp rags, oven was never tackled that project yet. Why am I saying all this???? Just a comedy of fasicals of things to do commonly known as life's necessary to get done listings. Tracie, this vibration of my nerves sometimes is happening deep in those ligaments, muscles, tendons, or whichever it is going on my legs between my knees and thighs. This doesn't happen all the time, but I have felt this occassionly. I'am having also unsteady balance at times like a drunk in his/her worse condition. This may be caused by that Gabinetin nerve pain pills I'am taking. Then it may be a combination of this drug and muscle weakness in my legs. In your vast knowledge of researching about this thing called sarcoid, have you or you already know that a person can start having "precondition" of these T.I.A.'s (mini-strokes) and seizures?? I don't know what it is, but my mind is

not comprehension of what is around me or what I'am doing. Again this maybe be caused by that nerve pain drug. It's a generatic of Neurotin nerve pain drug I'am talking about. What kind of neurological symptoms can a person with sarcoid have affecting the nerves internally other than pain like a sarcoid lesion on the spinal cord? I know about these "mini-strokes" and seizures in the brain, and the nerves can go bad affecting the cranal nerves, and the bladder, but what these other "parts" (like the gall bladder, liver, kidneys)? (2) I combine all this in one e-mail just results in one long one. Well I just get to the point here. This second part of this e-mail, "What's the use??? Why should I bother???" has to do with applying for Social Security Disability Income. Lo and behold, what came in the mail this past Friday???? Social Security Statement paper from the Social Security Administration. I'll quote from page 2 of this 4 page paper

statement sent to me. Disability: "To get benefits if you become disabled right now, you need 32 credits of work, and 20 of these credits had to be earned in the last 10 years. Your record shows you do not have enough credits in the right time period." Ther'e saying to me right now if I'am considered as disabled by doctors doesn't make a difference you cannot collect Social Security Disability Income. I'am more disabled now than even a year ago. At times I feel so weak, I wonder how can I even walk. At times I feel like I could be in a whirlpool tub 24/7 for the rest of my life. I have arthristis pain in my fingers which the finger left of my left thumb is the worst. Pain popping up in my shoulder blades, my face, my arms, amoung other places intermetenly for minutes, hours, or even days. My lungs have stablized and the lung doctor said no sarcoid active there in my lungs when I seen him in June. But rest of me

seems to gradually malfunctioning. If I don't return to work and that is a slim possibility at that situation, if I cannot get S.S.D.I. the only possible income (legal that is) is from the V.A. I'am refering to the Non Service Connected Disability Income from the Vetrean's Administration. Summary, why should I bother now and apply for S.S.D.I., when all said and done it will be denied???? Tracie, I wrote about something. I did buy a pint of rum earlier this summer but not those sleeping pills. Oh I'am not sucidal now, just more depressed. Same ol', same ol' worthless person that I always have been, now, and will be. worthless All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

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