what the heck?
July 30, 2009 8:38pm
Ok, so tomorrow will be 7 weeks since Preston died, and it is all very strange. It feels like the summer that he was so excited to see coming has …
Progress
40 %
Issamae
9:43pm, August 23, 2009
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About Me
Issamae
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About Me
I am a 30 year old, part-time administrative assistant, and I have one child. I have Narcolepsy with Cataplexy, which began around age 11, although I wasn't diagnosed until age 18.
I am a 30 year old, part-time administrative assistant, and I have one child. I have Narcolepsy with Cataplexy, which began around age 11, although I wasn't diagnosed until age 18.
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Interests
I love to cook, organize things, and scrapbook!! I am a domestic goddess, when I have time, and the rest of the time, I am just sleeping beauti. (just kidding.) I am also a major smart-a**, especially when my meds wear off. I love to write, mostly poetry, but also just about anything. I am very artistic, and I am kinda grouchy more than I should be. Biggest challenge these days is trying to recover from the death of my sweetheart, friend, and soul mate.
I love to cook, organize things, and scrapbook!! I am a domestic goddess, when I have time, and the rest
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Recent Activity
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Journal
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One more day
July 27, 2009 2:52pm
Today I woke up early, just after the sun came up. Everyone else was still asleep, and it was so peacefull and quiet. Sometimes I enjoy the silence, …
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Hugbook
Sorry
i'm so sorry i haven't been here for you, i hope your heart is mending xx
Hug
I am thinking of you and hope that you are doing well.
Thanks
Hug
u r rite abt narco sucking big time. mine was prob caused by the brain injury i had as a teen that scrambled my brains in more ways that i like 2 think.
many hugs-
Hug
hugs dear
i have had narco ever since a brain injury as a teen
i'd like u as a friend
alice
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Photos
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Support Groups
Close Narcolepsy
Geez, 500 characters is not enough..I have narcolepsy with Cataplexy. I was diagnosed when I was 18, although I was told that my first neurologist should have seen that I had it when I was in the 4th grade. Things that really bother me about Narcolepsy w/ Cataplexy: 1. I can't drive. (they would give me my license, but I have a condition which compromises my focus, which means I have no business behind the wheel.) 2. I am tired all the time, even with the medication. (the meds could kill my liver too, and have made my blood pressure on the high side..I don't like that either) 3. I have WICKED nightmares (the hypnogogic hallucinations..need I say more?) 4. I can't watch anything funny unless I am sitting down, and even then, I am taking a gamble..(cataplexy at its finest.) I haven't found anything that I LIKE about being this way, except to say that I don't have insomnia..ha ha ha.
Treatments
- Dexedrine Working / Worked
- I have been taking Dexedrine for 8 years, and it WORKS. Has some bad side effects (High BP, jitters, dry mouth, etc.) but I can't function without it.
Close Bereavement
Type: Loss of a Partner/SpouseI am trying to recover from the death of my boyfriend (better described as best friend, lover, and soul mate). He died in his sleep from a bad reaction to pain medication. He was 31. I have loved him since I was 11, and I am absolutely heartbroken.
Treatments
- Crying Somewhat Helpful
- Not sure if this is realy a treatment, more like self mis-treatment. I do feel better after a mind numbing round of sobbing, oddly enough.
- Getting Angry Not Working
- I am not sure who it is I am angry with, so this is still on the backburner. I know that anger and rage will not help me to get over this, it will just cause me to be bitter. Trying to stay away from this.
- Grief Counseling Somewhat Helpful
- Could only afford one session of this, at $95 per hour.
- Helping Others Considering
- Not ready to take care of other people, because I can't really even take care of myself.
- Keeping Busy Not Working
- I can't seem to concentrate on one thing long enough to be keeping myself busy.
- Music Not Working
- Every song reminds me of him. Every line is something that I should have said, or wanted to hear from him, or shoots me back to happier times, reminding me of how miserable I am now.
- Pets Considering
- Got a new dog. He is very loving and sweet. I am not sure if this is helping, as I can't seem to feel anything besides absolute devestation.
- Poetry Somewhat Helpful
- This is terribly painful, and I have no one to share it with after I have written it, so still deciding if it has helped.
- Prayer Working / Worked
- Although I have not had any mind blowing revelations or experiences, telling my Heavenly Father that this is more than I can deal with has seemed to help. For short periods of time anyway!
- Reading Working / Worked
- Complete fiction, and fairy-tale type stories are good. It is perhaps the absence of reality that makes this work.
- Remembering Not Working
- This is extremely painful, and it seems as though the memories are under a film or a cloud, from too many attempts at trying to recall ever detail.
- Support from Friends & Family Not Working
- Not getting much of this. Maybe it would help if I did.
- Support Groups Considering
- Not sure if I am ready to break down in front of perfect strangers..am trying to get the courage up to go.
- Talking Working / Worked
- I have been talking to him out loud whenever I am alone. I sure never wanted to be that crazy chick who talks to herself!
- Time Too Soon to Tell
- It has only been about 6 weeks. I am surviving, though if the pain remains at this level, I am not sure that surviving is a good thing.
