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#21 Lais02

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Posted 27 May 2009 - 02:46 AM

I heart Xyrem wink.gif

#22 greatbig47

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Posted 27 May 2009 - 12:24 PM

One man's meat is another man's poison....

ESPECIALLY with our types of meds...
Xyrem isn't right for me, but it has changed the lives of so many of us.

#23 greatbig47

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Posted 27 May 2009 - 12:26 PM

QUOTE (Lais02 @ May 27 2009, 03:46 AM) <{POST_SNAPBACK}>
I heart Xyrem wink.gif



I know I'm going to see this on a tee-shirt at the next conference!
THANKS, JAZZ PHARMACUEDICALS!!!!

#24 Lais02

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Posted 27 May 2009 - 12:37 PM

QUOTE (greatbig47 @ May 27 2009, 11:26 AM) <{POST_SNAPBACK}>
I know I'm going to see this on a tee-shirt at the next conference!
THANKS, JAZZ PHARMACUEDICALS!!!!


lol good idea! smile.gif

#25 malachi777

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Posted 27 May 2009 - 08:53 PM

QUOTE (Lais02 @ May 27 2009, 05:37 PM) <{POST_SNAPBACK}>
lol good idea! smile.gif



I am exhilarated to see that you guys and gals are on here laughing and kidding around. We all need this as a form of therapy. I caught a lot of flack for joking too much. You folks have made a giant step to a happier life for yourselves. I deal with my N by joking continuously and I apologize to those who it bothers. I do it not to harm you, but to bring a smile to your faces, even if it has to offend one person. Your positive upbeat comments brings health to all. The habitual sorrow is negative energy, and too much will harm rather help with our healing. We all need to blow smoke to relieve tension and stress but lets continue to equalize our emotions for better health. Now, I'm gonna go in the kitchen and get the remote out of the freezer. I figure I put it there when I grabbed the ice tray. I told Gina I put it there because it was too hot from channel surfing. unsure.gif biggrin.gif

#26 sleepless sleeper

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Posted 27 May 2009 - 09:35 PM

Grieving and sorrow are part of the ever evolving process. Just the same as happiness and joy. My problem has been that when someone on here is upset, they are told to be happy. To me that is not support. Encouragement love happiness. All are important. It is an ongoing process. I never think that u do anything to hurt anyone. You are a much better person than that. I know this to be true.

When u say glad we're laughing, etc., that's great, but remember there is another side. It is not an evil side. It is not a dark side. It is merely another human side. One that a person should not be shunned for. In coping with this side, exposing it, asking for help, that is when we are raw and down trodden. That is when we need compassion. Not "get over it." I've said that words of encouragement are needed. that's always good. But please be as excepting of all facets of our grief as well as our joy. It is the only way that most people can evolve to move on to another stage of life. - probably only to return to the down side yet again at another point in the future.

We've ALWAYS had laughter on here. And love. And banter. This forum is ever evolving just same as we are. It is a reflection of the collective us. Habitual sorrow is bad. OUt of ALL the conversations that u and I have had, how many were negative, truly? How many made us laugh? I am not a habitually negative person, nor a sorrowful one. I am so in tune with my being that I KNOW me. I know that I am a force of nature that is light and dark. I am good and bad. I am joy and sorrow. I am life and I am death. All of these things are with in me. All of these thigs are within all of us. I think taht I can relate to many because I have experienced so very much, and I have learned ot not be afraid of what I am and what I have become. I am love and compassion. I am anger and piss. I am all these beautiful things. I am all these scary and violent things. But above all, I am human. And I stand tall in my compassion for my fellow pwn's. I stand tall in my friendship with you, too. I have lost so much energy, but I am one of the most passionate people that you will ever meet. The non-energy passion. ha. yeah. If I see a wrong, I will announce it. But if I see a good, I will yell it from a mountain top. Positive breeds positive. But negative must exist for a balance. Nurturing it to mend, but not to grow. Not to fester.

Have you never cried a tear for your condition, if even for a split second? some need to express for others to help. Or in my case, getting it "out there" heals my spirit tremendously. I have yet to see one person on here be depressed, sad, whatever, and stay that way. That includes me. I go from one to the other. And I laugh quite a abit on here. This is a place to be ourselves. It has bothered me so much because I spent the majority of my life -from young childhood- my ENTIRE life, being treated horriblly because i was always told that i was depressed and that i just didn't know it. it was narcolepsy. I've only beeen dx'd for a few years and I"m FORTY-ONE years old. I've had just under 35 years of my life being placed by others into that role and then made to feeel badly for it. That's almost how old you are, M. That's older than the majority of our users on here. That's why I speak so loudly against what I deem as belittling someone for being down. Let them be down - but show them how to be up while supporting them.

We had a person on here recently saying that they weren't happy being alive. That is serious. But it's from this disease. Yes, laughter is important. Yes, laughter is the best form of therapy. But if you've ever been depressed enough that you don't want to live, you don't need to hear that it's about time there was some laughter - esp if the laughter is from another person. REmember that depression can be very real. You are a remarkable person, M, and I wish that I had your ability to laugh things away all the time. I can't leave my house. I can't drive. My husband is always gone. We have no resources aroung here to help me. I have young kids that I can't always take care of. I can't work. I have no outlets - except here. You still have these things, which is awesome. And I am sincerely deeply happy for you and for everyone on here because it sounds like so many people here haave the ability to continue on with some semblance of a life. But I am in a cage, and I cope, and when I see someone else in the same position, all I want to do is help because no one NO ONE should have to live a life like this alone nor to feel ashamed of expressing ANGER at this cage. That anger may flow to apathy, which to me is the worst, or depression, or insanity, or anything else. But it is a flow, something fluid, and it should be allowed to exist. Like water, it can be diverted, but it should not be dammed. At that point, the energy only builds while we think it is a calm lake, and waiting to explode.

I've said before that what you say is a good thing. You are right. You are an inspiration. A breath of air. But for a person that is in deep depression, hearing that what they are saying or doing is the 'wrong' thing can make them feel worse regardless of what they respond with. I said earlier, but erased, that telling a depressed person to not be depressed is akin to telling a narcoleptic person to not be sleepy. A positive attitude ALWAYS wins the day. I never disagree with this. But let it happen without forcing it. Encourage it. Be supportive of those that need it.

#27 malachi777

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Posted 28 May 2009 - 10:54 AM

QUOTE (sleepless sleeper @ May 28 2009, 02:35 AM) <{POST_SNAPBACK}>
Grieving and sorrow are part of the ever evolving process. Just the same as happiness and joy. My problem has been that when someone on here is upset, they are told to be happy. To me that is not support. Encouragement love happiness. All are important. It is an ongoing process. I never think that u do anything to hurt anyone. You are a much better person than that. I know this to be true.

When u say glad we're laughing, etc., that's great, but remember there is another side. It is not an evil side. It is not a dark side. It is merely another human side. One that a person should not be shunned for. In coping with this side, exposing it, asking for help, that is when we are raw and down trodden. That is when we need compassion. Not "get over it." I've said that words of encouragement are needed. that's always good. But please be as excepting of all facets of our grief as well as our joy. It is the only way that most people can evolve to move on to another stage of life. - probably only to return to the down side yet again at another point in the future.

We've ALWAYS had laughter on here. And love. And banter. This forum is ever evolving just same as we are. It is a reflection of the collective us. Habitual sorrow is bad. OUt of ALL the conversations that u and I have had, how many were negative, truly? How many made us laugh? I am not a habitually negative person, nor a sorrowful one. I am so in tune with my being that I KNOW me. I know that I am a force of nature that is light and dark. I am good and bad. I am joy and sorrow. I am life and I am death. All of these things are with in me. All of these thigs are within all of us. I think taht I can relate to many because I have experienced so very much, and I have learned ot not be afraid of what I am and what I have become. I am love and compassion. I am anger and piss. I am all these beautiful things. I am all these scary and violent things. But above all, I am human. And I stand tall in my compassion for my fellow pwn's. I stand tall in my friendship with you, too. I have lost so much energy, but I am one of the most passionate people that you will ever meet. The non-energy passion. ha. yeah. If I see a wrong, I will announce it. But if I see a good, I will yell it from a mountain top. Positive breeds positive. But negative must exist for a balance. Nurturing it to mend, but not to grow. Not to fester.

Have you never cried a tear for your condition, if even for a split second? some need to express for others to help. Or in my case, getting it "out there" heals my spirit tremendously. I have yet to see one person on here be depressed, sad, whatever, and stay that way. That includes me. I go from one to the other. And I laugh quite a abit on here. This is a place to be ourselves. It has bothered me so much because I spent the majority of my life -from young childhood- my ENTIRE life, being treated horriblly because i was always told that i was depressed and that i just didn't know it. it was narcolepsy. I've only beeen dx'd for a few years and I"m FORTY-ONE years old. I've had just under 35 years of my life being placed by others into that role and then made to feeel badly for it. That's almost how old you are, M. That's older than the majority of our users on here. That's why I speak so loudly against what I deem as belittling someone for being down. Let them be down - but show them how to be up while supporting them.

We had a person on here recently saying that they weren't happy being alive. That is serious. But it's from this disease. Yes, laughter is important. Yes, laughter is the best form of therapy. But if you've ever been depressed enough that you don't want to live, you don't need to hear that it's about time there was some laughter - esp if the laughter is from another person. REmember that depression can be very real. You are a remarkable person, M, and I wish that I had your ability to laugh things away all the time. I can't leave my house. I can't drive. My husband is always gone. We have no resources aroung here to help me. I have young kids that I can't always take care of. I can't work. I have no outlets - except here. You still have these things, which is awesome. And I am sincerely deeply happy for you and for everyone on here because it sounds like so many people here haave the ability to continue on with some semblance of a life. But I am in a cage, and I cope, and when I see someone else in the same position, all I want to do is help because no one NO ONE should have to live a life like this alone nor to feel ashamed of expressing ANGER at this cage. That anger may flow to apathy, which to me is the worst, or depression, or insanity, or anything else. But it is a flow, something fluid, and it should be allowed to exist. Like water, it can be diverted, but it should not be dammed. At that point, the energy only builds while we think it is a calm lake, and waiting to explode.

I've said before that what you say is a good thing. You are right. You are an inspiration. A breath of air. But for a person that is in deep depression, hearing that what they are saying or doing is the 'wrong' thing can make them feel worse regardless of what they respond with. I said earlier, but erased, that telling a depressed person to not be depressed is akin to telling a narcoleptic person to not be sleepy. A positive attitude ALWAYS wins the day. I never disagree with this. But let it happen without forcing it. Encourage it. Be supportive of those that need it.


I never thought I would spill my guts and display my deepest, darkest secrets but here it goes. The question is,"Do you know what it is like to be depressed?" As a young child, I witnessed my sibling being raped, I was molested as a child by a baby sitters son, I lost my father at 8 years old and I can go on and on and on. I was diagnosed with manic depression at 15 years old and injested a whole bottle of prescription medication at 23 years old and went into cardiac arrest. It is a miracle that I am still alive with the help of paramedics and doctors who brought me back to life.

Since that day, I made a decision to fight to be happy. I decided that I was here for a reason and I need to make a positive mark in my life by helping others. I am no longer depressed and no longer take meds for depression. I did recently begin taking Prozac, not for depression, but for cataplexy.

I am a human who cries, laughs and gets angry. I get depressed at times for this wretched disease but I am not going to allow others to keep me down. As I stated before, we have a disease that seriously interferes with our lives, but we have to make the best with what we have. In February, I collapsed in the shower, onto my knees and cried hysterically. I have not done that in many, many years. I am a strong will, hard headed, physically strong, fit, work horse who has a subtle, loving, compassionate and sensitive personality. I do not like to be questioned about whether or not I understand others. I completely understand, but I will not reply to their sadness and and say, "Oh, poor soul, I know, I know". I will affirm with them that it is alright to be sad, but search for the light to get out of the darkness. Live, love and laugh the most you can. Sadness makes us sicker physically. I know. I lived it.

So yes, I am a human being, I do cry, I do get angry, I have negativity in my life, I suffer with narcolepsy, and a minor heart condition BUT...I WILL NOT ALLOW IT TO TAKE OVER MY LIFE. I WILL NO LONGER ALLOW OTHERS WHO I COMMUNICATE WITH ON THE SITE AND OTHERS TO BE HELD DOWN BY DESPAIR, BUT I WILL REACH DOWN AND PULL THEM UP. EACH AND EVERY AFFIRMING WORD I USE TO OTHERS, WILL MAKE A POSITIVE IMPACT IN THEIR LIFE IF NOT SOONER, BUT LATER. I AM NOT TELLING OTHERS TO STOP BEING DEPRESSED, I AM TELLING OTHERS THEY CAN DEFEAT IT TO A POINT WHERE THEY CAN LIVE A FAIRLY NORMAL LIFE.

There are many forms of depression. There is circumstantial depression, manic depression, bi-polar disorder, dysthymic disorder, endogenous depression, it goes on and on. If any of you are dealing with despair to the point of giving up, please get help as soon as possible. I promise, it will get better with time. Some need medication and therapy, others only need understanding. The will to live is an automatic emotion gifted from God. If someone has lost that will, it needs to be understood that it is not your fault for thinking that way because the chemistry in the brain need to be repaired. Many medications can help with that. There is light through the darkness but only if you make the ATTEMPT to step out and look for it. I made that decision and I eventually overcame it without medication. I am so happy that I survived. I have moments of sadness but more, I see the greatness of life. I love watching my children grow up and watching the clouds in the sky. I have a disease but it does not have me. Sometimes it hits me in the face, but I WILL continue to defeat it after wiping away my tears.

My comment to others about laughing and being positive was to tell others how they made me feel. I was a little down, and their comments brought me up. I am sorry that I upset you, but as you stress over and over again," we need to accept others emotions." Why don't you accept mine? Everytime I say something positive, you SS, reprimand me for my ideas, beliefs, and opinions. Thanks for understanding me for the individual that I am. All others, I do truly thank you for your compliments and positive words. Michael

#28 malachi777

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Posted 28 May 2009 - 11:33 AM

Greatbig47 had a great saying on his Avater: "God did not put us on this planet to merely exist but to live"
-evel knievel

This is my point. I work 5 hours per day and spend the rest of the time sleeping. I have no life compared to a normal person, but each fleeting moment I am awake, I do not exist, but LIVE.

I do not dread, I look forward to my waking moments.

When I am down, I get back up.

When I fear, I fight.

When I cry, I smirk by knowing it will all be over soon.

#29 sleepless sleeper

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Posted 28 May 2009 - 12:04 PM

yes, and it is human. we all have those horrible experiences, and i'm sorry for yours.

this is not what i'm talking about, and i think that this is why the two of us are running parallel to one another even though we are both intelligent, loving, caring, and kind people.

this is not to know whether or not you are human; we know that. this is not to truly know whether or not you cry. we know the answer to that. this is not to know if you've had bad experiences. we are human and know that answer.

having a moment of true depression is a real thing. that's all. all i'm saying is be there for the person when they have it. let them have. walk on the path WITH them. don't say, "to feel better then there is the path to follow, see you on the other side."


I know many things that you have been through. Now I know more. I apologize from the bottom of my heart that I came across as wanting you to show your scariest darkest true nightmares. You did not need to do that, but you did it. And you are right, we cannot dwell on the past. We must always put one foot in front of the other or go ahead and place our feet in our graves.

Some days I do just exist. But EVERYDAY is a new day; every moment is a new moment. I know these things , and I adjust my life accordingly. But I will still be a fierce fighter for those that are not allowed to be depressed. Working through those feelings are needed in order to heal, just the same as a person needs to work through grief. When a person is depressed they need to be supported in the way that they need it, not the way the other person wants them to need it. Sadness, depresion, chronic illness - these things make others uncomfortable. I can now see why you have a hard time coping with someone else's sorrow. But it will pass. With time it will pass. Will it heal? depends on the person or the situation.

my life is a balance, but i've had time to arrive at this. it is a decent balance and I can exist in this place that God has put me. But, it has been an ardous journey, not much different than yours. We exist on this world to help one another, hence the term coexist.

you are so very right in not dwelling in badness. you have great gifts. and you are a good friend. you are a good friend to many. Telling someone to attempt to step out, etc. is what is needed. That is support. just saying be happy and then not paying attn until that person in happy only belittles the other person. not supportive. my only point has been that this site is created for the support of those with a chronic incurable disease. accepting depression is only a part of it. that doesn't mean accept and allow it to fester.

i wish i could give u a big hug.

#30 sunrisemoon

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Posted 28 May 2009 - 05:04 PM

QUOTE (sleepless sleeper @ May 29 2009, 03:04 AM) <{POST_SNAPBACK}>
yes, and it is human. we all have those horrible experiences, and i'm sorry for yours.

this is not what i'm talking about, and i think that this is why the two of us are running parallel to one another even though we are both intelligent, loving, caring, and kind people.

this is not to know whether or not you are human; we know that. this is not to truly know whether or not you cry. we know the answer to that. this is not to know if you've had bad experiences. we are human and know that answer.

having a moment of true depression is a real thing. that's all. all i'm saying is be there for the person when they have it. let them have. walk on the path WITH them. don't say, "to feel better then there is the path to follow, see you on the other side."


I know many things that you have been through. Now I know more. I apologize from the bottom of my heart that I came across as wanting you to show your scariest darkest true nightmares. You did not need to do that, but you did it. And you are right, we cannot dwell on the past. We must always put one foot in front of the other or go ahead and place our feet in our graves.

Some days I do just exist. But EVERYDAY is a new day; every moment is a new moment. I know these things , and I adjust my life accordingly. But I will still be a fierce fighter for those that are not allowed to be depressed. Working through those feelings are needed in order to heal, just the same as a person needs to work through grief. When a person is depressed they need to be supported in the way that they need it, not the way the other person wants them to need it. Sadness, depresion, chronic illness - these things make others uncomfortable. I can now see why you have a hard time coping with someone else's sorrow. But it will pass. With time it will pass. Will it heal? depends on the person or the situation.

my life is a balance, but i've had time to arrive at this. it is a decent balance and I can exist in this place that God has put me. But, it has been an ardous journey, not much different than yours. We exist on this world to help one another, hence the term coexist.

you are so very right in not dwelling in badness. you have great gifts. and you are a good friend. you are a good friend to many. Telling someone to attempt to step out, etc. is what is needed. That is support. just saying be happy and then not paying attn until that person in happy only belittles the other person. not supportive. my only point has been that this site is created for the support of those with a chronic incurable disease. accepting depression is only a part of it. that doesn't mean accept and allow it to fester.

i wish i could give u a big hug.

I think Michael's point (and I'm certainly not speaking for him), from what I interpret, is that negativity begets negativity and likewise happiness will produce more happiness. I don't see a lot of positivity or happiness in your posts, SS. There doesn't seem to be the balance you say you have. Sure, this forum is an outlet to purge the difficulties with those who relate, but I find it difficult to respond sometimes, because although I relate to the issues, I don't relate to the 'woe is me'. I have enough worries without typing out and reinforcing the crappy stuff I have to deal with. I'd rather write about what I can do, despite the crap.

I'd love to post here more often and use this as a resource to fill my 'I am better than this damn narcolepsy' bucket. But when I see Michael get put in his place for being too happy and positive, it makes me sit on my hands and stay away from the keyboard. Who wants to get in trouble for being happy?

We become what we think.

#31 Irishhh

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Posted 28 May 2009 - 09:41 PM

QUOTE (NeedLots0Advice @ May 26 2009, 07:01 PM) <{POST_SNAPBACK}>
naw i don't see medicines having different effects on people a cop out?
provigil made me feel like i was in a quite room and everything was still and calm almost to the point i was sleeping.

1. what exactltly is provigil suppose to do? what is it for.

2. also on the side effects thought. thats what i was wondering was side effects. concerta also known as respiridol, it nearly killed me thankfully i was in a hospital when it was given to me, because it sent my heart rate up to 190 beats per minute (before they turned the monitor around so i could'nt see it). nearly died they had paddles rdy and gave me beta blockers and some other shots administered into my heart by the doctor himself.

so yea i know bout side effects. very leary of medication. smile.gif



I would seriously recommend not taking xyrem. It makes you dead to the world asleep. I just wouldn't do it if I were you. Have you ever been under anesthesia? That made me sleep and sick for days! I couldn't come out of it. OMG it was terrible! I am afraid of xyrem too! Since its the date rape drug and all, it just really freaks me out. To know I could be that knocked out. I mean what if there was a fire, or some kind of intruder? A tornado? A flood. You know???

#32 eightlegs

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Posted 28 May 2009 - 11:22 PM

QUOTE (Irishhh @ May 28 2009, 10:41 PM) <{POST_SNAPBACK}>
I would seriously recommend not taking xyrem. It makes you dead to the world asleep. I just wouldn't do it if I were you. Have you ever been under anesthesia? That made me sleep and sick for days! I couldn't come out of it. OMG it was terrible! I am afraid of xyrem too! Since its the date rape drug and all, it just really freaks me out. To know I could be that knocked out. I mean what if there was a fire, or some kind of intruder? A tornado? A flood. You know???


You know I had the same fears about taking Xyrem, as I've got 2 small kids at home, and wasn't too comfortable about the "mommy ears" being dead to the world.. but the thing is, and the Xyrem people will tell you the same, at the proper dosage you shouldn't be unwakeable. That's not to say that there won't be nights while you are finding the right dosage that you will be completely out of it.. because there likely will, but for the most part you still will be pretty much functioning. I'm considering asking the dr. to try it again (I go in to see them next week)... and my concern right now is that I live alone with my kids.. and should there be an emergency in the middle of the night you WON'T be able to drive.. but you should still be able to wake up.. walk, function. Maybe be a bit clumsy.. but not dead to the world.

As awful of a reaction as I had to the Xyrem (I think my dose was too high, and I had a fast, deep depression come on)... I would still be willing to attempt it again, maybe slower and at a lower dose... because when it did work, it was fantastic. I woke up feeling like I'd actually slept, barely needed adderal at all, no cat at all, and felt more clear headed than I have in as long as I can remember. I know some people just can't tolerate it at all... but I wouldn't be afraid to at least try it.

#33 jenji

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Posted 29 May 2009 - 12:45 AM

Regarding Michael's posts:

"I never thought I would spill my guts and display my deepest, darkest secrets but here it goes. The question is,"Do you know what it is like to be depressed?" Do I ever... Like you, I've had so many traumatic experiences that to list them on page would seem utterly absurd. No one would believe that a person could survive all that trauma. And manic depression can be a real kick in the pants, I get it. It takes you to the very edge of despair: I've been there too and it's not pretty.

"Since that day, I made a decision to fight to be happy." Wait? Seriously, were we staying in the same hospital? To come out on the survival end of a traumatic, life-changing experience can have a profound effect on who you are and who want to be as a person, for yourself and others. I get it, ya dig.

"Sadness makes us sicker physically. I know. I lived it." You are 100% correct! It. Is. Toxic. Ruminating in particular is the most destructive thing a person can do to oneself. I didn't ask for any of the trauma that I've survived, nor did I ask for the current chronic conditions that I have to struggle with. I had no choice in these situations. However, I made a choice to adapt to the world around me, my reality, and to be as well as I can be. What other choice do I have? Misery is still a distinct option, but I've hit the lowest of the low before; the real rock bottom and finally a literal lightbulb went off in my head: Never Again. No more.

Never Again will I allow myself to become that miserable person; to feed that misery. At one point it was life or death and back then I chose egregiously wrong, but something somewhere; someone; something chose life for me and so who am I to argue? I mean, I was enlightened, not in a religious way, I mean it was a conscious decision, but a visceral one as well if that makes sense. It was an epiphany and I was relieved that I didn't have to live that way any longer. I am so eternally thankful for whatever part of my brain or the universe allowed me to see and ultimately embrace such a gift. I'm not always beaming and brimming with sunshine either, and I in fact still go through significant bipolar depressions every now and again (chronic N flares et al.), but when I feel the darkness coming I speak up to my psychiatrist or to my neurologist and they see it and we work it out together whether that's med adjustments or whatever, the point is that we are on it b/c I have learned, that to ignore it could at the very least cause profound sadness and misery and at the very worst grave consequences; I've wasted enough of my life in misery and sadness. And so still to this day I still feel relieved when I say: No More. Proactive not reactive. And it takes work and dedication to live that way.

As far as everyday stress and worry, for the most part I budget the amount of time I will allow myself to grieve or ruminate over my particular predicaments and conditions. I schedule my worry and it works quite well (eg I'm feeling overwhelmed and anxious and so Thursday I will allow myself to feel those feeling and then be done with it and move forward. and every day is a new day, so Thursday I wallow and then Friday I move on and the choices I've made since my enlightenment have allowed those new days--the next day--to be at the very least do'able, as I've all but eliminated extraneous, elected drama from my life by choice), but it takes a distinct dedication and habitual practice for most to succeed with this approach. Proactive living is key. I simply refuse to embrace misery and/or drama ever....again. I've woke in the hospital after having been on the doorstep of death and never want to willingly return. I've found my fiance hanging from the ceiling, cut him down and watched as he died in my arms. I've been tempted by misery, hopelessness and sadness time and again. I mean, I've been dealing with a couple of chronic illnesses for well over 15 years and many times incapacitated by them, let down by drugs that didn't work, or may have had adverse affects/effects, as well as by incompetent, ignorant doctors and unsupportive family/friends time and again; my frustrations and struggles with N are quite profound and a daily occurence and often unpredictably disabiling, but still: it is what it is, and so No more: I will and did get as well as I could/can be, and continue to work on it. But unfortunately many do wallow in or thrive on misery and/or drama, they may do so unconsciously or perhaps they might not yet see that there is another way and that's okay too. Still many others may never see, for it can be an inherent temperament; a personality. Such is life.


"So yes, I am a human being, I do cry, I do get angry, I have negativity in my life, I suffer with narcolepsy, and a minor heart condition BUT...I WILL NOT ALLOW IT TO TAKE OVER MY LIFE." Yes! "I AM NOT TELLING OTHERS TO STOP BEING DEPRESSED, I AM TELLING OTHERS THEY CAN DEFEAT IT TO A POINT WHERE THEY CAN LIVE A FAIRLY NORMAL LIFE." And many will thank you for it, Michael. What may be normal for one, may not be normal for another; simply put, be the best normal that you can be. You are spot on! You are a true survivor and allowing oneself to live the best life one can live can be quite empowering, albeit challenging.

"There is light through the darkness but only if you make the ATTEMPT to step out and look for it." Yes, make the attempt, you dont have to always be successful. I am so happy that I survived. I'm happy that you survived too and despite all of the trauma, sickness and pain I am overwhelmingly thankful that I survived as well. Little things occur to me: I will often be thankful for the oddest things, like for being fortunate enough to have a lovely bathtub and cozy, warm bed. For popcorn at the movies. For fresh cut lawns and friends who would wipe my snot at 4am if I asked them to. For my inherent ability to remember that things could always be worse, and to also remember that I've already survived far worse...

"I have moments of sadness but more...I have a disease but it does not have me"...(throwing gesticulated fist into the air in agreement!) "Sometimes it hits me in the face, but I WILL continue to defeat it after wiping away my tears." Okay seriously dude, get out of my head and stop looking into my personal mantra windows would you?

I look at it as: After all of the trauma, pain and illness I too am a survivor and choose to keep moving forward, no matter how small the steps. And sometimes those steps in fact require a good cathartic cry. Okay then, so I will purge myself of tears and pain and then just keep moving forward no matter what. I have no other choice.

It is a resilience or what Michael J Fox refers to as: the ability to "just keep doing the next right thing."

I really believe that anyone can do it, they just have to make the choice to do so and work at it as if it were a matter of life or death, b/c in the end it kind of is, as misery and sadness makes death seem easy and life seem near impossible.


" we need to accept others emotions." Why don't you accept mine?" Consider yourself accepted, mister!

Thanks for sharing, Michael.

be well,
jenji


PS and yes sunrisemoon, we become what we think and often what others will tell us that we are (or shall I say, aren't).


#34 malachi777

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Posted 29 May 2009 - 03:26 PM

QUOTE (jenji @ May 29 2009, 05:45 AM) <{POST_SNAPBACK}>
Regarding Michael's posts:

"I never thought I would spill my guts and display my deepest, darkest secrets but here it goes. The question is,"Do you know what it is like to be depressed?" Do I ever... Like you, I've had so many traumatic experiences that to list them on page would seem utterly absurd. No one would believe that a person could survive all that trauma. And manic depression can be a real kick in the pants, I get it. It takes you to the very edge of despair: I've been there too and it's not pretty.

"Since that day, I made a decision to fight to be happy." Wait? Seriously, were we staying in the same hospital? To come out on the survival end of a traumatic, life-changing experience can have a profound effect on who you are and who want to be as a person, for yourself and others. I get it, ya dig.

"Sadness makes us sicker physically. I know. I lived it." You are 100% correct! It. Is. Toxic. Ruminating in particular is the most destructive thing a person can do to oneself. I didn't ask for any of the trauma that I've survived, nor did I ask for the current chronic conditions that I have to struggle with. I had no choice in these situations. However, I made a choice to adapt to the world around me, my reality, and to be as well as I can be. What other choice do I have? Misery is still a distinct option, but I've hit the lowest of the low before; the real rock bottom and finally a literal lightbulb went off in my head: Never Again. No more.

Never Again will I allow myself to become that miserable person; to feed that misery. At one point it was life or death and back then I chose egregiously wrong, but something somewhere; someone; something chose life for me and so who am I to argue? I mean, I was enlightened, not in a religious way, I mean it was a conscious decision, but a visceral one as well if that makes sense. It was an epiphany and I was relieved that I didn't have to live that way any longer. I am so eternally thankful for whatever part of my brain or the universe allowed me to see and ultimately embrace such a gift. I'm not always beaming and brimming with sunshine either, and I in fact still go through significant bipolar depressions every now and again (chronic N flares et al.), but when I feel the darkness coming I speak up to my psychiatrist or to my neurologist and they see it and we work it out together whether that's med adjustments or whatever, the point is that we are on it b/c I have learned, that to ignore it could at the very least cause profound sadness and misery and at the very worst grave consequences; I've wasted enough of my life in misery and sadness. And so still to this day I still feel relieved when I say: No More. Proactive not reactive. And it takes work and dedication to live that way.

As far as everyday stress and worry, for the most part I budget the amount of time I will allow myself to grieve or ruminate over my particular predicaments and conditions. I schedule my worry and it works quite well (eg I'm feeling overwhelmed and anxious and so Thursday I will allow myself to feel those feeling and then be done with it and move forward. and every day is a new day, so Thursday I wallow and then Friday I move on and the choices I've made since my enlightenment have allowed those new days--the next day--to be at the very least do'able, as I've all but eliminated extraneous, elected drama from my life by choice), but it takes a distinct dedication and habitual practice for most to succeed with this approach. Proactive living is key. I simply refuse to embrace misery and/or drama ever....again. I've woke in the hospital after having been on the doorstep of death and never want to willingly return. I've found my fiance hanging from the ceiling, cut him down and watched as he died in my arms. I've been tempted by misery, hopelessness and sadness time and again. I mean, I've been dealing with a couple of chronic illnesses for well over 15 years and many times incapacitated by them, let down by drugs that didn't work, or may have had adverse affects/effects, as well as by incompetent, ignorant doctors and unsupportive family/friends time and again; my frustrations and struggles with N are quite profound and a daily occurence and often unpredictably disabiling, but still: it is what it is, and so No more: I will and did get as well as I could/can be, and continue to work on it. But unfortunately many do wallow in or thrive on misery and/or drama, they may do so unconsciously or perhaps they might not yet see that there is another way and that's okay too. Still many others may never see, for it can be an inherent temperament; a personality. Such is life.


"So yes, I am a human being, I do cry, I do get angry, I have negativity in my life, I suffer with narcolepsy, and a minor heart condition BUT...I WILL NOT ALLOW IT TO TAKE OVER MY LIFE." Yes! "I AM NOT TELLING OTHERS TO STOP BEING DEPRESSED, I AM TELLING OTHERS THEY CAN DEFEAT IT TO A POINT WHERE THEY CAN LIVE A FAIRLY NORMAL LIFE." And many will thank you for it, Michael. What may be normal for one, may not be normal for another; simply put, be the best normal that you can be. You are spot on! You are a true survivor and allowing oneself to live the best life one can live can be quite empowering, albeit challenging.

"There is light through the darkness but only if you make the ATTEMPT to step out and look for it." Yes, make the attempt, you dont have to always be successful. I am so happy that I survived. I'm happy that you survived too and despite all of the trauma, sickness and pain I am overwhelmingly thankful that I survived as well. Little things occur to me: I will often be thankful for the oddest things, like for being fortunate enough to have a lovely bathtub and cozy, warm bed. For popcorn at the movies. For fresh cut lawns and friends who would wipe my snot at 4am if I asked them to. For my inherent ability to remember that things could always be worse, and to also remember that I've already survived far worse...

"I have moments of sadness but more...I have a disease but it does not have me"...(throwing gesticulated fist into the air in agreement!) "Sometimes it hits me in the face, but I WILL continue to defeat it after wiping away my tears." Okay seriously dude, get out of my head and stop looking into my personal mantra windows would you?

I look at it as: After all of the trauma, pain and illness I too am a survivor and choose to keep moving forward, no matter how small the steps. And sometimes those steps in fact require a good cathartic cry. Okay then, so I will purge myself of tears and pain and then just keep moving forward no matter what. I have no other choice.

It is a resilience or what Michael J Fox refers to as: the ability to "just keep doing the next right thing."

I really believe that anyone can do it, they just have to make the choice to do so and work at it as if it were a matter of life or death, b/c in the end it kind of is, as misery and sadness makes death seem easy and life seem near impossible.


" we need to accept others emotions." Why don't you accept mine?" Consider yourself accepted, mister!

Thanks for sharing, Michael.

be well,
jenji


PS and yes sunrisemoon, we become what we think and often what others will tell us that we are (or shall I say, aren't).


Jenji, who are you? Your words were so extremely touching and beautiful. Did I tell you the last time I cried was in February? I was mistaken, it occurred today. I am so touched by your words, I cannot even begin to thank you and tears filled my eyes because I felt as if we were the same person and your thoughts expressed mine, but so much better. I am utterly shocked that you agreed with every single word I spoke. Thank you!! I am deeply touched! Your words......................I am speechless. I could never explain it so artfully. I hope others here who need inspiration, read this beautiful post.

I am so sorry that you had to go through this despair as well, and oh, how so very proud I am of you for pulling yourself out of this darkness. You not only asked for help, you took your medication and received therapy. More importantly, none of that would have worked without YOU making the decision to make a change and fighting this deadly disease called depression.

I do not want anyone to be offended or angry. I just pray that you too will one day see the light, outside the darkness. Understand that darkness is so much weaker than light. Light is love, light is power. It does not matter how dark it is, light will always show itself through darkness and overcome it. Our only need is to put purpose to it and light the match. Without acting upon the need for happiness, you will be smothered in darkness forever.

Sadness enters my life on a daily basis but I decide when it will end. I am stronger than it is and so are you. Get up and live people! It does not matter if you are unemployed, and can no longer work. Sure, it would be fantastic but just be exhilarated that you are alive. Life is so beautiful on most days. Sure, we have narcolepsy, and it sucks, but live my friend, live. Existence is not enough. Make the best of life that you can.

Be sad, but only for a moment. Be angry, but only for a time. We are human, and we have emotion. More importantly, we are loved by our family, our friends and God. Make the best of your situation. I have spoke to many N sufferers on here and some are unemployed. They still find happiness through their darkness.

Jenji......God bless you!!! And I pray that God will bless those who are living in this darkness and need the strength to step out. Take Care. Michael

#35 angellus

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Posted 29 May 2009 - 06:37 PM

QUOTE (NeedLots0Advice @ May 26 2009, 07:01 PM) <{POST_SNAPBACK}>
naw i don't see medicines having different effects on people a cop out?
provigil made me feel like i was in a quite room and everything was still and calm almost to the point i was sleeping.

1. what exactltly is provigil suppose to do? what is it for.

2. also on the side effects thought. thats what i was wondering was side effects. concerta also known as respiridol, it nearly killed me thankfully i was in a hospital when it was given to me, because it sent my heart rate up to 190 beats per minute (before they turned the monitor around so i could'nt see it). nearly died they had paddles rdy and gave me beta blockers and some other shots administered into my heart by the doctor himself.

so yea i know bout side effects. very leary of medication. smile.gif




Ok i just did a double take... this is incorrect waaaay off..


"concerta also known as respiridol, it nearly killed me thankfully i was in a hospital when it was given to me, because it sent my heart rate up to 190 beats per minute (before they turned the monitor around so i could'nt see it)."


These two are not the same thing. I take concerta, which is a form of time release ritalin, only made in a barrel type pill that is desiged for timed release.

Resperdal.. is an a bi-polar/schizophrenia/autism drug that is a liquid.


http://www.risperdal...dal/safety.html

#36 dogdreams

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Posted 01 June 2009 - 04:22 AM

QUOTE (greatbig47 @ May 27 2009, 10:26 AM) <{POST_SNAPBACK}>
I know I'm going to see this on a tee-shirt at the next conference!
THANKS, JAZZ PHARMACUEDICALS!!!!

But Orphan Medical was the company that developed it and lobbied Congress over and over...I know they're gone now, or something, but shouldn't you still thank them? Just sayin...

#37 Sleep Meister

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Posted 01 June 2009 - 11:31 PM

QUOTE (eightlegs @ May 25 2009, 10:37 PM) <{POST_SNAPBACK}>
I'm getting frustrated again, and am poking around for more answers. Quick summary I've had two sleep studies (day and night) from two different dr's... first said IH, then narcolepsy, but then I switched dr's after having a bad reaction to Xyrem and getting no support. Second study came back ruling out narcolepsy, with an official diagnosis of "Upper Airway Resistance Syndrome" and "Repetitive Intrusions of Sleep". huh.gif I had 22.6 non-snore related spontaneous arousals an hour that no one can seem to explain... and funky fragmented sleep. I have cataplexy, (but I don't think the dr's believe me) and have tested positive for two of the 3 HLA types. That's what I know. Tried lots of meds... none of them really making much difference, or not for long.

I came across this study tonight.. and I just can't seem to make sense of what it's saying... can anyone translate?

http://cat.inist.fr/...cpsidt=16153023



#38 Sleep Meister

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Posted 01 June 2009 - 11:35 PM

QUOTE (Lais02 @ May 27 2009, 12:46 AM) <{POST_SNAPBACK}>
I heart Xyrem wink.gif


Eight Legs,

If you have cataplexy, you have narcolepsy. You can have narcolepsy without cataplexy, but if have cataplexy, you have narcolepsy.

Sleep Meister

#39 eightlegs

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Posted 02 June 2009 - 08:40 PM

QUOTE (Sleep Meister @ Jun 2 2009, 12:35 AM) <{POST_SNAPBACK}>
Eight Legs,

If you have cataplexy, you have narcolepsy. You can have narcolepsy without cataplexy, but if have cataplexy, you have narcolepsy.

Sleep Meister


Yeah.. I KNOW. dry.gif After my 2nd sleep study, which didn't say much of anything... the dr's sort of dismissed everything else. I kept saying "but what about the cataplexy symptoms?!" and it would get brushed aside... I guess that's my frustration. If what I'm experiencing is in fact cataplexy, then it seems like a no brainer, but if it's not cataplexy, I'd really like to know what the hell it is... and if one more person tells me it's anxiety I'm going to beat the stew out of them. angry.gif I've been close to several people who have crippling anxiety, and nothing like I experience has ever happened to them.. it's not a panic attack.. it's not anxiety... I just wish I knew what it was.