Hi, I'm new here,I've never joined any kind of group (online or other) before now. I guess I really don't know where to begin, so maybe I should tell you about myself. I was diagnosed w/narcolepsy at age 14, and then a few years later I started having cataplexy episodes.
I'm sorry, I'm really pretty shy (even on-line). So I will just say "Hi" to everyone, and thank you for listening.
I Feel So Alone
Started by
willow
, May 03 2012 03:12 AM
9 replies to this topic
#1
willow
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Interests:I' m an Artist, mostly pencil / charcoal. Some oil and other mediums,
My true love is my son, he's 9 yrs. old and autistic. He is adopted, in fact I helped to deliver him. He's Beautiful!
.I was a surgical assistant until my N/C got too bad to work.
Posted 03 May 2012 - 03:12 AM
#2
818sis
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Posted 03 May 2012 - 04:15 PM
Hi! I'm new here too. I'm quite a bit older than 14, and am waiting to see if I get a diagnosis this week or next. Welcome!
#4
Asleeper
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Posted 03 May 2012 - 10:48 PM
Welcome , the good thing about this forum is that you can just read the posts and then if you see something you want to comment on you can add a reply. If you have a question you can post it and fellow narcoleptics can reply and help out. I've learned so much about myself that I had never understood before. Face it, where else can you go to meet and share with others like yourself.
I am an artist too. I think the narcolepsy helps with my creativity.
I am an artist too. I think the narcolepsy helps with my creativity.
#5
Bexterina
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Posted 04 May 2012 - 11:37 AM
Hi, I'm new here,I've never joined any kind of group (online or other) before now. I guess I really don't know where to begin, so maybe I should tell you about myself. I was diagnosed w/narcolepsy at age 14, and then a few years later I started having cataplexy episodes.
I'm sorry, I'm really pretty shy (even on-line). So I will just say "Hi" to everyone, and thank you for listening.
Hi! I am also a new member. So far I am finding everyone to be very friendly. It's such a relief to know there are others who truly understand what it's like to have N.
#6
LauraL
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Posted 04 May 2012 - 01:54 PM
I'm also new here. I was just diagnosed a few weeks ago. I understand about feeling alone--people who haven't dealt with N/IH just can't really understand what it's like, even if they want to. I'm fortunate to have a lot of supportive friends, and their kind words mean a lot, but, when push comes to shove, I'm still the one fighting sleep. I really appreciate this community--you all have helped me feel not so alone. Glad you're all here. And welcome, Bexterina!
#7
mjensen0520
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Posted 04 May 2012 - 02:40 PM
I too am new here. I have been dx with n/ih and signs of cataplexy. I'm still trying to figure things out really. It's good to have a name to the nonsense I have been dealing with for several years. No one understands how I feel or what all of this does to you mentally and physically. My mom doesn't believe the diagnosis... My husband tries to be understanding but i think It's hard for him to really grasp how N affects me. I have to take very high doses of Ritalin and Adderall that it affects my mood and causes me to be irritable. I had an apt with my sleep Md and my husband came with and he asked her about my Ritalin dose, and where would one max out. Her response was, she passed that a long time ago. He made the comment that I bully my Md about my meds. I tell her the dose that keeps me going (from Md trial and error of course). He doesn't understand it. Sorry to go on a rant on your thread, I'm just feeling completely alone right now. Ugh. 
I hope u can find some answers here and a place where ppl understand what your going through. YOU ARE NOT ALONE.
I hope u can find some answers here and a place where ppl understand what your going through. YOU ARE NOT ALONE.
#8
Johnna
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Posted 28 July 2012 - 09:05 PM
Hi!
Feeling alone is normal with this. I was diagnosed 2 years ago and even though my family and friends have a better understanding of narcolepsy, I've yet to meet anyone who "gets it". I know it must be extremely hard at 14 - but I think you're very lucky. My onset was at 15 or 16 and I got diagnosed just before my 30th birthday. I'm glad you don't have to go through 10+ years of everyone thinking that you're lazy!
Johnna
Feeling alone is normal with this. I was diagnosed 2 years ago and even though my family and friends have a better understanding of narcolepsy, I've yet to meet anyone who "gets it". I know it must be extremely hard at 14 - but I think you're very lucky. My onset was at 15 or 16 and I got diagnosed just before my 30th birthday. I'm glad you don't have to go through 10+ years of everyone thinking that you're lazy!
Johnna
#9
Megssosleepy
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Posted 31 July 2012 - 08:26 AM
Willow,
Its been some time since you started here on the N Network. How you feeling these days? Have you found treatment that works well for you?
WE ARE ALL HERE for EACH OTHER!
Its been some time since you started here on the N Network. How you feeling these days? Have you found treatment that works well for you?
WE ARE ALL HERE for EACH OTHER!
#10
Kim Kay
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Posted 27 September 2012 - 02:00 PM
Hi, I'm new here,I've never joined any kind of group (online or other) before now. I guess I really don't know where to begin, so maybe I should tell you about myself. I was diagnosed w/narcolepsy at age 14, and then a few years later I started having cataplexy episodes.
I'm sorry, I'm really pretty shy (even on-line). So I will just say "Hi" to everyone, and thank you for listening.
You're not alone - we've all dealt with similar frustrations. How are you doing now?
