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Well, It Finally Happened To Me


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#1 napnow

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Posted 09 September 2009 - 09:31 PM

I have been reading a lot and posting a bit since my Dx at the end of July. I read about stupid things people say. I thought I might be one who has somewhat understanding friends...

I told one of my friends today that I have N and that I am working on trying to get my meds straightened out. Right away she gave me the name and number of a chiropractor who does bio feedback and what not. I mentioned the whole autoimmune thing and lack hypocretin etc... She basically went on about how "that is what the medical establishment wants you to believe". She said that the chiropractor can cure just about anything with herbs. She then recommended that I listen to "The Secret". Apparently all I have to do is "ask the Universe" to feel better and I will! She said that according to "the Secret" all illness is due to stress and that I can "beat it" by telling myself I can. I am all for positive self talk and keeping a good attitude, and I do believe that some things are mind over matter. But this? Curing myself of N? Come on. She was not trying upset me, but she did.

Sheesh. Okay, so this is my story... When I was a teenager I was stressed and I somehow developed N... and through the years... high school, college, graduate school, newely wed, new mom, older mom... I was not positive enough, I was not eating the right herbs, and I did not chant "I feel great" during my lows. All of my past has brought me to this point. I am finally diagnosed and now I need to "beat" N because after all, it is easy just ask the universe. Forget the part about completing college, getting my master's, having kids, moving, traveling, living. It does not count.

My friend is totally wrong, she has it all backwards. She has known me for 4 years. I had N through those years, just not the diagnosis. Why does a Dx make me, all of a sudden, have to see the witch doctor and talk to the universe? Why, all of a sudden, am I accused of not thinking positively? Why, all of a sudden, do I need to chant? I don't. She doesn't see or remember or care about what I have done in my life. It seems to me that "beating" N is not something that needs to be done after you get diagnosed. It happens when you manage to live some modicum of normal life while dealing with N, diagnosed or not. Mind over matter happens when PWN go to work every morning, post interesting articles on the forum, keep in touch with friends, make dinner, get out of bed. To me I am a success, I have a great life, I am productive, I am "beating" N every minute of the day. I have been beating N since I was a teeanger, even though I did not know that I was. When you think that perhaps being thrown into prison would not be all that bad because you could sleep, or when you wish you could crawl into a hole and hibernate for a year, and DESPITE those feelings you live... that is beating N.

Which came first the Narcolepsy or the diagnosis? The Narcolepsy stupid! So, now that I have established my strength shut up and let me make life a little easier. I deserve it after all...

Well thanks for reading my rant. I got a lot of things straightened out in my head and I feel better.
~napnow

#2 Nyx

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Posted 10 September 2009 - 10:16 AM

That sounds incredibly frustrating. Even more so if it's a good friend. I guess my only advice would be to try to look at this as her natural coping mechanism if you want to try to continue to be friends. So perhaps what she was saying really has nothing to do with you. She probably feels better and can deal with her own problems more by believing that following the suggestions she made to you will help keep her safe and healthy. Perhaps it gives her a sense of some control in an otherwise uncontrollable universe. And perhaps she's derived a lot of support and benefit from these beliefs, and rather than trying to make you feel you've done something wrong, she's really just trying to share her own coping mechanism with you. Granted, she's doing it in a terrible way, but perhaps if you want to try to reconcile your friendship with what she's said/thinks, it can be seen in a different light? I don't know. I'm just trying to offer an alternate perspective. If I were you, I'd be spitting mad too. But after I cooled off, I'd probably try again to educate her about narcolepsy. I'd probably be doomed to fail, but I'd try.

#3 sleepless sleeper

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Posted 10 September 2009 - 12:37 PM

HA HA HA HA AH HA HAHAHAHHAHAHHAHAHAHAHAHAHHhahhahhhahahaahahha sorry, I.. ,. forgive me... need. to . wipe. tear. from. eye. A chiropractor popped a rib from my sternum and also gave me a herniated disk in my neck. C4/C5. Yeah, lovely lot.

If someone were to be hit in the head and had their skull smashed open and brain matter fell from their head onto the ground at your "friend's" feet, do you think that she would call her chiropractor if that person were to live? I do.

It is horribly frustrating to listen to people like this. And you know what? Maybe we truly are deceived. Maybe the answer to all the problems in the universe are wrapped up in a chant. Maybe we are too stupid and LAZY to grasp this concept...

Nah, it's your friend and those like her. Have you ever seen the commercial that shows an egg and has the narrator stating, "This is your brain." Then it shows the egg plopped into a frying pan, and then you hear the narrator, "This is your brain on drugs." That was your friend's brain that was used in the commercial. And of those like her. I'm worn down by them and their quick cures. Did you read the other thread regarding this topic?

http://narcolepsynet...__fromsearch__1

I'm so sorry that you've had to deal with this non-empathic fop. Don't even try to discuss it any further with her because you will only become more frustrated. If she is a good friend otherwise and you want to keep it that way then don't discuss it with her; otherwise, you'll grow to resent her.

#4 disordered

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Posted 10 September 2009 - 02:05 PM

First, congrats on living life to your fullest preN and now taking positive steps to find out what you can do in order to stay awake from here on!

Second, sorry to hear about your friend's response. It is never easy dealing with that kind of negativity (which those spouting seem to thing is a positive approach...go figure), even more so when it comes from a friend. Sleepless sleeper is soooo (extra o's for emphasis, not a sleepy finger!) right about not discussing this again with your "Secret" knowing friend. From personal experience, it really does only lead to resentment and in my case (with my supervisor of all people), ever increasing stress and frustration. As much as you can think that 'maybe if I tell them this, or if I explain it this way', unless lightening strikes, chances are they are just not going to understand.

But on the off chance that your convo with the universe leads to your 'cure'....can you give me the universe's phone number, I can't seem to find it?!

#5 Marcianna

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Posted 10 September 2009 - 03:45 PM

::shudders::

Though I personally believe in speaking to the Universe and the laws of attraction, I have to say when I saw "The Secret" I was hugely disappointed. Not only does it come off as a over rated infomercial, they really make it seem like everything can be solved by just simply Willing it. Which is Bogus. you really have to concentrate HARD and for years for such things to happen. And YES. IT CAN HAPPEN... But very rarely in the form of curing anything. Best to concentrate on small more achievable goals I say. WILL yourself to have a good day. and then another and then another.... but in order to keep the balance, you are going to have bad days also. There is no CURING of that sort of thing. I wonder if she would have told you the same thing if you had told her you had cancer. I seriously doubt it.

The universe, God, whom ever, pick a deity, places obstacles in our path for a reason. We may not like it. It may totally suck and seem impossible, but in the end it makes us stronger.

And if nothing else WE are strong. Tired and cranky, yes... BUT STRONG!

#6 greatbig47

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Posted 10 September 2009 - 05:54 PM

::shudders::

Though I personally believe in speaking to the Universe and the laws of attraction, I have to say when I saw "The Secret" I was hugely disappointed. Not only does it come off as a over rated infomercial, they really make it seem like everything can be solved by just simply Willing it. Which is Bogus. you really have to concentrate HARD and for years for such things to happen. And YES. IT CAN HAPPEN... But very rarely in the form of curing anything.


I agree...at face value, the secret works...mostly...sometimes...

I don't think the universe serves as our "cosmic sugar daddy". I think it has MUCH more to do with ourselves on a molecular level, rather than thinking the Universe is a magic Genie. I also believe that if people think the Secret effect is because of some mystical power in the universe, the effect is probably the same.

Google Fred Allan Wolfe. He was in the secret, and has since came out and said he doesn't agree with parts of it.

Sometimes when friends hand us the name of a good chiropractor, I think it's okay to just smile and say thank you. :)
These friends usually mean well.

#7 greatbig47

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Posted 10 September 2009 - 05:59 PM

I agree...at face value, the secret works...mostly...sometimes...

I don't think the universe serves as our "cosmic sugar daddy". I think it has MUCH more to do with ourselves on a molecular level, rather than thinking the Universe is a magic Genie. I also believe that if people think the Secret effect is because of some mystical power in the universe, the effect is probably the same. I know a good handful of people that have a new life because of the Secret...but I think these changes have all happened within these individuals because of them...and not some hocus pocus. Either way, I DO recommend The Secret...but only as a starting point.

Google Fred Allan Wolfe. He was in the secret, and has since came out and said he doesn't agree with parts of it.

Sometimes when friends hand us the name of a good chiropractor, I think it's okay to just smile and say thank you. :)
These friends usually mean well.



#8 sleepless sleeper

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Posted 10 September 2009 - 06:57 PM

WARNING: The following is a diatribe, and you may want to skip it. It was not meant to be one, but that is what it turned out to be.

Oh, Marcianna, never underestimate the enthusiasm of holistic followers, Secret followers, or (fill in the blank with whatever new/ alternative medicine group).

My father had benign brain tumors, was on full hormone replacement, ongoing diabetes insipidus, heart disease, and in the end diab. type II. Add to that list narcolepsy. According to some friends of mine, he could find natural alternatives to everything wrong with him. He could get off ALL medications and replace them with natural remedies or be in tune with the universe or if he had the right mind set. This included meds for the d. insipidus and all hormone replacement meds, which he would normally go into shock and die within 24 hours without them.

Also, I was informed by a few different people that my mother's gleoblastoma multiforme (immediately infers stage 4) brain tumor that was the size of a small grapefruit could be healed using a derivative of a sugar from an aloe vera plant. The research does sound promising for a few ailments, but good heavens- my mothers? At this stage in current medical research? At the time that my mom had hers, the longest that a person had ever survived after having one of those tumors removed was five years- literally only a handful. Her surgeon had one patient that had survived for two years. Normally they die within a few months because of extremely aggresive and rapid regrowth after surgical removal. EVen explaining that hers had crossed the corpus collosum, cerebellum corpollosum (whatever the division is between brain hemispheres into the main area of the brain, invasion of which is irreversible and means that death is imminent), it didn't matter. Or actually, if my mother had taken care of herself during life then she would never have gotten sick in the first place. I was informed by others that if she had always drank purified water during her life then she would never have gotten the tumor. Let's see... um...

Oh, good heavens, one supernatural afficiendo stated that my father caused my mother to have the brain tumor from the hereafter and that if he had been an unselfish person, then he would not have done that to her. (BTW, he was selfish because of all the ailments that he had had.) I wanted to beat the snot out of that person. I know that I have mentioned violence a few times in a couple postings, but I assure you that I am not a violent person. It's just that the stupidity of some people can cross a line. We, as members of the same race of beings (human - this is not a statement of skin pigmentation), must have a code of conduct to follow in order to coexist. Certain rules of behavior are just ingrained. Usually, when a loved one becomes ill, a friend or family member will not make certain statements about that person. The same goes for a person that is diagnosed with incurable diseases. But people that strictly follow alternative medicine routes cannot shutup about it when the most that they should do is inquire whether alternative resources were being looked at. At that point, give the other person a chance to ask more about it. It is not a bad thing to express the success that others have experienced, but to me, the line is crossed when the "concerned" person states that an incurable ailment CAN BE CURED, or worse, that the ailment could have been prevented if only...

There is no question - to me - that there is a greater "something" that can be tapped into to make us the best that we can be, especially combined with taking meticulous care of ourselves. Perhaps some of these concerned others have been cured of ailments that were supposedly incurable. Look at a few people with N like symptoms that have gotten better with a strict and true gluten free diet. Well, sure they're better. They were allergic to gluten and/or had Celiac's. Was Celiac's or their allergy cured because they switched diets. Heck no. Give them gluten and watch them wheeze (not literally). But they are able to control the disease that they say is cured. And some of the people do consider their conditions cured if they follow a strict regimen, but that is not the definition of cured. That is remission. Celiac's can cause neurologic disorder like symptoms after years of depletion of certain vitamins and minerals - according to some research, which we now know can be contradicted with a 180 degree spin.

I never mind people wanting to share experiences. I do it. I'm doing it now. It is an excellent way to learn. In my opinion, though, sharing and making insensitive, absolute statements are two different things. Marcianna, what I typed is not geared toward your response. When I first read your reply, I only wanted to state that we should never underestimate ... (re: first sentence). Once I typed that, however, I couldn't help but think of the experiences I had when my parents were sick. The things that I heard were not said with mean intentions, but the end effects have been horribly negative. I didn't used to get so upset with what others had to say about my N, but since I went through what I did with my parents, I now feel that once these concerned others cross that medical degree "knowing" line, then they just become a-holes. Sorry for the crudeness, but it is illustrative of the extreme negativity that I feel for them.

And GB47, you posted your response during the time that I typed this. You're right. I think that they are just trying to help, but they need to use some sensitivity. Then again, if I hadn't heard some of the BS that I did regarding my parents, then I probably would not be this cynical. I apologize for this turning into a rant, but I'm still posting because I put the energy into it.

I forgot to mention that my parents did try various alternative treatments. There were prayer groups, pow-wows, healing stones, sweats, positive reinforcement, meditation, energy redirection, mental imagery, ... i can't remember all. So much. One thing is certain, though, having hope does make a person's final days a bit better.