Narcolepsy Support Group

Both of my siblings show some symptoms of N, and both are around the age I was when mine showed up (brother is 17 and will be 18 in November, sister is 19). They have complained to me and confirmed even "small" things like increased spacing out, short-term memory loss, trouble with morning "fog," and SP/HH on occasion.

Now, when I was diagnosed with a heart condition that my doctors insisted was not genetic and likely was due to infection and overuse of antibiotics and steroids as a child, a condition that was and is minimally impacting my daily life, if at all, my mother ran out and had those kids tested every which way to make sure they were fine.

Now, when they HAVE symptoms of a condition that impairs my ability to function on a daily basis and perform the most mundane and simplest of life's tasks just to care for myself and enjoy what time I'm aware of being awake, whether they speak with her or I do, she REFUSES to consider helping them get to a specialist or speak with their doctors about being referred for sleep studies.

My brother obviously has moderate to severe apnea (I suspect he does not have N and would improve dramatically with treatment for that), and has since he was a young child, and my father has been on a c-pap for years for the same. She is a nurse and knows the risks of not getting treatment; for years she harped on my dad to get checked because she never slept for fear if she wasn't awake when he stopped breathing, he might never start again. So why is it she doesn't push for her son?

Dad STILL falls asleep at the drop of a hat and he & I have discussed the possibility that he may have mild N. He has improved so dramatically since his initial diagnosis, and like me, he generally does not fall asleep if engaged in conversation or activity with others. He does not have the confusion and fog and inability to function, so he is not concerned about looking into it further at the moment. He figures at his age, if he can make it driving and get through work, a nap on the couch after dinner is not something to worry about.

But being a teenager and sleeping 20 hours a day when time permits IS. I just don't understand how they watched me suffer for years and they still assume (ok, she assumes, he stays out of it) it's a matter of "being a teenager." You'd think finally having a diagnosis for me would help her recognize that there may be more to it and perhaps now would be a good time to get help, rather than six years from now. She sees how hard it is for me on a day to day basis.

ARG! I'm so frustrated. I know that to her, some of it has to do with the fact that to an extent, I did self-diagnose. I had these symptoms no one was paying attention to or giving me an answer for, I had seen several doctors who insisted nothing was wrong with me when I knew better, and I did research. A lot of research. And when I found N, it fit. More correctly, when I found PWN, I fit. They fit. So I found a doctor who knew N and could tell me if that was it. So even though someone with a degree who does this on a daily basis confirmed that I was right, somehow I'm still a hypochondriac and a web m.d. addict.

I thought a hypochondriac found conditions and THEN had symptoms, not the other way around? I didn't think they went to the doctor for one reason and came out with a completely unrelated diagnosis (such as when they found my heart condition) without saying a word. It's bad enough my boyfriend doesn't believe I have anything and insists I should be off all medicine, lose a hundred pounds, and I'll be awake and gorgeous and happy; but my own mother, a medical provider herself, will barely acknowledge my condition, has never said the word "narcolepsy" or asked about it, and I'm pretty certain has never done any research on it.

Hmmm...apparently this was more of a rant. Sorry, guys. All out now. If you read it and it made sense, thanks for sticking it out and congratulations on having an awake day! ;o)
Posted on 10/03/09, 12:10 pm