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Reply | Forward Message #1875 of 2876 |
Hello

Hello, everyone!  Some of you know me and all of this but just in case you don't know/remember  I am posting ME - LIVE AND IN PERSON to help us all know me better.
     First off, I would like to find an emotional that has a smile with wide-open eyes.  That would be nice, however, I don't know how to do it or where to find it, so I will be content with this one for now.
     My name is Jean S.  I go by many names, and I am a recovering alcoholic/addict.  I was diagnosed with N in 1999, and then in 2000 my doctor (with the help of MSLTs) confirmed that C was also prevailant.  I grew up in Janesville, Wisconsin, USA.  I currently reside in WhiteWater, Wisconsin, USA.  At 37 years young I have been involved in a 12 step program for 11years.  Currently, I am prescribed to take 300mg of Provigil in the morning and a total of 6gm of Xyrem before going to sleep in the evening (this is subject to change come Feb 9th, I go to see Dr. Cook [sleep, pulminary specialist in Janesville, WI] for a re-eval of what is working and what is not).
     Hey, Question?, is it legal for me to disclose my doctor's name?  I know it is - I was just trying to lighten up a little bit - ya know because It really has to be hard to be a doctor - I mean not being able to talk about a patient (by name) with anyone other than the staff.  Man, that has to suck.
     Any way, back to me, oh yeah!  What does one say on one of these board things?  I am just sure that I will be able to give my own experience, strength, and hope when it comes to answering something that I have read - but for real I have a hard time (within me) of just talking all about me all at one time.  But, as long as I am awake, and alert enough I might just as well get on with it, right?
     The other names that I have been called (on a continuous basis - and can actually post legally) are: SureThing, EagleArrowWoman, Shadow, (my birth name) Jean, and sometimes I get called Sybol -mmmmmmmmm, wonder what that is all about.  Actually, I don't wonder, I know - Sybol is because I get very passionate in speach, and body language - "they" say that my words and actions can come across to others as offensive - I tell you this because I am now going to apologize in advance for if I say something to anyone and ya'll find it to be abrasive, abusive, or offensive.  I am apologizing up front only for the times that I do not sincerely intend to come across in that fashion.  If I intend to be any of the above ways I will let the group(s) or individual(s) know that that is my intention.  There now we are all on the same level.  Common ground - that is where I like to be - on the same planet (the same plateu) as the people/person I am addressing.  No hiearchy for me - gotta all have the same eye level.  I am thinking that is why I have decided to start communicating with others that share my afflictions (we'll call them) - because no matter how old you are or how tall you are we all sit at the same eye level - when we read the messages on the posts.
     O.K., for real, back to me.  I have lived with this "disease" for as long as I can remember.  When I was a younger girl (age - physically) my parents took me in to see a pediatrician (probably spelled that wrong - sorry).  My daddy would tell the doctor that "There is something seriously wrong with this child, she sleeps way too much.  And, if she doesn't get between 12 - 14 hours of sleep at night she is unbearable to live with."  My parents sent me through every test that they could think of.  I remember going through some of the tests like the EEG, EKG, (and going to sleep as the room would start to spin), the goiter test (I don't remember the name of) and a whole bunch of others (never a sleep study of any kind).  The result was "that doctor" telling my parents "THERE IS NOTHING WRONG WITH HER, SHE IS JUST FAT AND LAZY". 
     Talk about Ouch!  I spent most of my live induldging in everything I could just to try to proove that HE was wrong - I may have been fat (and that I truly could not control, as I tried everything from starvation to bulemea - more than likely that is spelled wrong), but I certainly was NOT LAZY!  and if HE would just pay attention he would see that.
     I was diagnosed because of my back (lower back actually).  I had spent 60 consecutive weeks in physical therapy.  When the specialist confessed that there is nothing more that we could do for me at that time, he started to ask me about my dreams.  That is how I was originally diagnosed.  2 totalled vehicles (both were my fault - single car accident - and I was stone sober just fell asleep), and the ER people couldn't put it together. Nope, it took a back specialist for me.  I was having to be moved physically first thing in the morning before I could move at all.  Thankfully, my husband was there to help me - whenever I asked for the help.  That was a very humbling experience for me to have to ask for help just to be able to sit up and put my feet on the floor.
     Thank you, but I believe this long enough - for now.  Ya'll have a wonderful day, I think I might just go take a nap now.  Happy dreaming!  Love and Respectfully, Jean


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Mon Jan 24, 2005 6:12 pm

jeansurething
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Message #1875 of 2876 |
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How are ALL of you? I was curious to know, How many of you either ARE on disability or are fighting for it? If you are fighting for it, how long have you been?...
Kristina Willhelm
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Feb 17, 2000
3:30 am

Kate, I am currently on Veteran's Administration disability since I was medically retired from the Air Force due to N. Besides my monthly disability check,...
kbs997s(Kevin B. Scott)
kbs997s@...
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Feb 17, 2000
7:41 pm

... I have been receiving disability for approx. two years. The best thing you can do is to get a lawyer who specializes in handling social security ...
JColl34515@...
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Feb 19, 2000
9:57 am

I guess I am extremely fortunate I work for City government and I am covered for now on the family medical leave act. I get 41% of my pay I don't know how...
nettie1234@...
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Feb 19, 2000
5:08 pm

Donna, THANK YOU very much for all your kind words. I am over it. As I have told both Nancy and Michael that it's obvious (something) is really wrong with them...
kateland@...
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Sep 14, 2000
9:51 pm

Does anybody use a natural remedy (herbal supp.) to keep them awake? I have a hard time when winter comes. I NEED to stay awake but I refuse to take drugs! Has...
kateland@...
kateland1976
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Nov 2, 2001
2:01 am

The supplement our son and I take is L-Tyrosine, 2000 mg a day (4 capsules usually to get that amount), which is very helpful along with other medication....
Jan and John Saecker
w2771circle
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Nov 3, 2001
10:56 am

Kateland, For years I have been using vitamins and natural herbes, They do help a lot I find taking individual vitamins just the ones I feel my body needs...
lucy6422@...
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Nov 10, 2001
10:01 pm

Thanks Lucy. I am on lots of herbal pills myself. But I have other severe health probs. so when the N is ok its something else that makes me in pain. But I...
kateland@...
kateland1976
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Nov 11, 2001
1:10 am

Hi Lucy, I am on a trial study for Xyrem in Canada. It took a month for it to kick in, but I feel better than I have for 7 years. I am now getting retorative...
Jim Devereaux
jdevereaux@...
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Nov 11, 2001
5:46 pm

Hello, everyone! Some of you know me and all of this but just in case you don't know/remember I am posting ME - LIVE AND IN PERSON to help us all know me...
Jean Standfield
jeansurething
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Jan 24, 2005
6:12 pm

I think you are toooooo upbeat. I've got to get some of whatever you are on!...
rabjc@...
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Jan 24, 2005
9:45 pm

Hey fellow Ner's I am on Provigil but hope that xyrem will work for me I know it helps my wakefullness but it shots my memory full of holes and it wasn't so...
nettie1234@...
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Jan 24, 2005
10:57 pm
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