WP Weblog

Hi Kat,
Yes, Kat, the list has a moderator. Go to egroups.com, sign in and go to
the narcolepsy page. You can click on a link to send the moderator an
email. I totally agree with you. It is inappropriate for persons who do
not have narcolepsy to join this list to solicit for research or news
articles. We have national support organizations who are prepared to handle
the media. This place should be have a comfortable atmosphere where persons
with narcolepsy can find answers and exchange information instead of being
put on the defensive by snoops.
I ask everyone to request the moderator to remove this person from this list
immediately.
Nancy Valencia

I got a phone call this morning from Dawn. Even
with the warning about her speech problems and the
fact that she speaks open-mouthed, I found it
extremely difficult to understand her; however, she DID
seem to have strength and I even got her to giggle
once. I could tell on a few other occasions that she
was smiling and that made me feel good. She got a bit
excited when I told her I could hardly wait for her to
get back on the computer so we could chat for a long
time again; realistically, though, I think it will be
a long time BEFORE she gets back on there. I
continue to pray for her recovery and I hope all of you
will too.<br

Hello! i live here in a tropical island, the weather is humid and hot. just exactly what my rosacea needs for it to flare up. Im a medical doctor and ive been researching on this condition. Rosacea is uncommon here. its usually seen with caucasian so none of my colleagues have that much clinical idea about this condition but my trigger factor is temperature.

Id be visiting my mother in nevada by february 2003. hows the weather there? I know it is also hot there, but how is the humidity? I just want to have an idea what to expect from my skin. any cooling gel/agent i can apply that you know ? thanks!

To the person soliciting for sleepy drivers. If you are looking for sleepy
drivers maybe you should contact: early morning commuters, bus drivers,
double shift workers, taxi drivers, airline workers working late into the
night, teenagers who stay up all night and then drive to school in the
morning, etc. etc.
Oh, guess what, that means you'd have to contact millions of people that have
no sleep disorders. Selecting people with sleep disorders is selective
prejudice. Do you really think that people will come forward and jeopardize
their driver's license.
Oh, btw, contact the president of the United States, I'm sure he is sleep
deprived and might drive while sleepy. Maybe you can contact the drivers of
the limo in England that killed the late Princess Di.
Please don't jeopardize we pwn anymore. We have enough problems without
someone creating more. Remember the key word when asking people about
driving while sleepy. Medicated pwn and other sleep disorders are safer on
the road than pwon who are falling asleep or drunk or high on illicit street
drugs.
The aforementioned is only my humble opinion. However, I bet others will
agree.
Good luck to you in your ventures.
Vicki

Kat,
I'm really sorry to hear how your doctor responded to you. Before I
finally got the correct diagnoses I had some unpleasant experiences with the
medical profession and I know how awful this makes you feel in addition to
the physical problems we have.
Find yourself a caring doctor. Let me know if you need to talk.
Marilyn

I did not see Paula's Choice listed among non-prescription
treatments. I use Paula's Choice products as well.
Lonne

Katherine Round,
The description of this list clearly states that its purpose is discussion
for persons with narcolepsy. It is not meant for persons such as you to
solicit from our members for whatever wild and wooly project you might
have. If you want sleepy drivers, I suggest you take a look around you. By
looking in the mirror, you will also find what you are looking for. GET
OFF THIS LIST. AS FAR AS I AM CONCERNED YOU ARE NOT WELCOME HERE.
Nancy Valencia

Hey, Jasper, I assume you've read the letter Dorla got from Nike... hope you
pass this on to your associates and friends over there on that side of the
ocean... :)<br

I am working on a piece on driver sleepiness for 'First on Five' at
Channel 5 news. We are recording this week and I am looking for
someone who has suffered from sleepiness behind the wheel to take
part.
We would require to do some filming with you this week at a location
convenient to yourself.
If you are interested or would like more information please contact
Katherine Round at Katherine.Round@... or telephone me on 020
7430 4257
Regards
Katherine Round

What may help you during the holidays is to understand
that when someone prepares some fancy dessert or some
high carbohydrate dish that you will not eat is understanding
the tremendous emotional impact food has on friends and
relatives at these gatherings. Loving family members may
understand your condition if you explain your condition,
while with some, for whatever reason, will continue to urge
you to eat what you know you should avoid. Preparing in
your mind what you will say to convince yourself is the key.
If you are not convinced that you should avoid it, the emotional
impact from the occasion will break your resolve. If you
give in, you will be convinced when your rosacea breaks out
later! Why not convince yourself before the emotion of
the event takes over? There is a plethora of lines to say
to well meaning friends and relatives when they urge you
to eat what you know you should avoid, like, "I appreciate
what you are offering and how much effort went into the
preparation of it and would love to eat it, but I know what
will happen to me if I do. Please don't keep doing to this to
me, because I know you love me and don't want me to
break out with rosacea."
You may have something else to say, but the key, one more
time, is that YOU have to be convinced that this diet works.
Understand that some will never understand your refusal
because they cannot relate to the horrible consequences of
a rosacea break out. What hopefully they can relate to is
your refusal is not because you do not love them or wish to
offend them in any way. It is simply you desire healthy skin.
Brady Barrows

Just a quick message this morning. My understanding from my GP is
that high blood pressure and sleeping disorders are strongly linked.
Also, the sleeping disorder and depression go hand in hand. As far as
information about sleep studies. I have had two. Depending on the
degree of sophistication of the equipment and technicians an
increasing amount of information can be gained. For example, you can
be wired for eye movements, breathing, heart rate, chest expansion,
brainwaves, leg movements, amount of oxygen in your blood, stages of
sleep you are moving through, dreaming, and on and on. The length of
time and the time of day are also things I had monitored.
My blood pressure is way down now that I am getting adequate sleep. I
am slowly losing weight with the increased activity and I feel
wonderful.

Hi, Josh,<br
Give me an update, if you have a minute. I'm very interested.<br

Is everybody else dreading this holiday? A day full of tempting foods
that we can't eat. I am especially lucky, I get to eat two dinners
with my family first and then my boyfriends family. I used to love
Thanksgiving, but I know tomarrow going to be a day of caution and
starvation. I don't want to go to my boyfriend's house looking like a
red beet, but I also want to enjoy the day. Is anyone else stressed
about this cruel holiday?

I think I tried just about everything and I could take 30 mg of Dexidrine and
sleep all day. Finally my doctor tried me on Desoxyn.
I'm on 30-40 mg. a day and have to boost that with nodoz at least twice a
day. But finally, I do feel alert most of the time. I still have times where
I find myself nodding off at inappropriate times...but I have a really
resistant case. I can't even begin to say how great it is to be awake during
the day and am finally sleeping most nights.
I know everyone is different but I would have a heart to heart with my
doctor if I were you and see if you could work on improving your quality of
life....because really that is what this is all about. We take the meds to
stay awake so we may experience life to the fullest. Good luck and let me
know how things work out for you.

I have been thinking for some time now that there should be
an international non-profit organization for rosaceans for the
purpose of patient advocacy for rosacea, rosacea information,
rosacea research, as well as informing the medical community
on rosacea. This organization should be member driven with
how the money is spent. The members should choose a board
of directors that decides how the money is spent annually.
This would have to be a grass roots process to raise the money.
I have discussed with a lawyer what needs to be done and the
initial filing fees and attorney costs are between $2500 and
$3000 in Massachusetts. It doesn't have to be in Massachusetts
but here is a start.
I am proposing beginning this process by setting up this group

deadprez017:

Hi Barbara,
Hope you don't mind if I email you privately. I have had two photoderm
treatments and they initially brought down the redness and diminished the
visible blood vessels but after about a month things are deteriorating. I
really think you have to keep going and going to make significant
difference. I have heard that it helps with rhinophyma depending on how bad
it is. I think it can bring down the swelling a bit. I am concerned about
where my nose is going. It seems to be getting bigger in places. It swells
when I have a flare and I wonder if that is effecting it. I have seen what
advanced cases of it look like but wondered what happens in the early
stages. I would like to get it treated early if that is what is going on.
What are the "stages" of rhinophyma if you don't mind me asking?
Thanks, Pam

I was surprised at the lack of posts on this
subject too, Ray, but I know there was an tremdous
response and just read some more news in another club. I
don't think the apology was sincere either but this
latest post said they lost a lot of money over it. The
disturbing thing is that the ad was ran in several
magazines. When they say they pulled the ad I wonder if they
pulled it in all magazines or just the Backpacker.I
haven't seen a list posted that named the other
magazines. I also saw that the story hit national news and
several papers. Dorla

Hey all. I was diagnosed with narcolepsy about 2-3 years ago. I was
first prescribed Cylert, and then Ritilin, and then Adderall. I
finally opted for the Cylert, and then had to work on the best doses,
and times to take it. After soon time I found that it worked best
for me if i took one in the morning, and then one at lunch. After a
few years it was losing it's effectiveness, so my doctor put my on
Porvigil. It has given me some improvements, but not what i had hoped
it would be. Sometimes i still take a Cylert at lunch. Also, I have
been waking up at night many times. I always fall right back asleep,
but i would welcome the night that I could go to sleep, and not wake
up until the next morning.
I was wondering if anybody had any other ideas. No matter how much
sleep I get at night, or how I feel when I wake up, not long after
lunch, I go straight down hill. Many days I come in from work, and
lay down for a few minutes and feel much better. But on the whole, I
would like to feel much better more often.

Am considering photoderm treatment for my rosacea and
rhinophyma. Would appreciate hearing from people who
have undergone this treatment and the results they've
had.
Thank you.

Dear Vicki,
who is this man, or group name? So I can be sure and AVOID the group.
Doesn't sound like a healthy supportive group.... I have many of the
disorders as you and a few more. Life is difficult enough without that
kind of treatment. I seriously doubt that anything like that would
happen here. At least it hasn't happened to me.
Hope you find the support you need here.
Purrs,
Kat

Hi all,

New to the list, but wanted to share my experience with this. I was diagnosed officially 4 months ago and have been using MetroCream with no success. I am convinced it is a money making device for the pharmaceutical companies and little else because I have never seen it work on anyone! :)

My secret weapon is Vaseline. I know this sounds repulsive and you can just see your pores clogging hearing that word, but I have extremely flakey rosacea that culminates into a powdery mess half way through the day at work and its obvious to everyone something is very wrong with my face. Heres what has worked for me....

CLINIQUE.

Clinique has helped me cool down and hide the redness. Nothing else has worked. I shower, put Vaseline on my face while I get ready, then I use a Clinique mild exfoliate toner with no additives to clean and moisterize my face. Then I put on my worthless metro cream, and then I put on this stuff called Clinique City Block SPF 15. This stuff hides the red but is also creamy and soothing. once that is on, I use Neutrogena cover up mixed with some of the City Block stuff, then a light powder. It hides everything and it doesnt flake for about 6 to 8 hours. It never looks cakey or fake. The stuff is a godsend and makes me feel so much better about my beet read face at work, where the lights in the office TELL ALL.

At night or after a long day I have the red face - every day. but at least I know when I go out I can temporarily control my problem with out a ton of makeup.

Stacy W.

New Jersey

Wow, Angela!! How wonderful to hear from you. How
not so wonderful to hear the time you are having
recovering. Come on, gal, let's get you back in the saddle.
We all miss you very much.<br
for the compliment &lt;blushes&gt; :)<br

Hi all. I was a member of Dana's private empire list until recently. He
kicked me off. He never game me a warning. He did not accuse me of breaking
any of his rules. He said that if anyone helps me gain access to his N list,
he would kick them off too.
I sent him several e-mails asking him why he kicked me off. He never even
gave me the courtesy of a response. He promised to respond, but never did.
I have narcolepsy, periodic limb movement disorder, obstructive sleep apnea,
fibromyalgia, bruxism maybe, and talking in my sleep. I hope none of you
cross him, because he uses his power against those who are the sickest. BTW,
he told another N member that I should leave the N list people alone and get
help elsewhere.
He has publicly ripped into one of our members who is really quite ill. There
is no excuse for treating people with such venomous hatred. If the goal of
the N list is sharing and helping each other, then this gentleman's motives
are a contradiction.
I judge people on how they treat people they have power over. No need to say
anymore about this gentleman.
If any of you folks reply to this post, please do so publicly, as I am sure
there others who have much to say on this subject.
Sleepy, not Stupid
Vicki

Sorry for not being here,,,<br
from coming to the desk.... I will drop a line
later.... but Im coming along...<br
feel like crap and I still dont sleep in my
bed...hopefully I will get a soft collar soon..will let you all
know..Again thanks for all joining...!!!! this isnt the most
comfy chair in the world...so I need to go will chat
another time... Love to all...<br
angela

Hi there, I have been reading the comments here about how one knows
one has narcolepsy. I have always complained about being tired. In a
nutshell the response of my present GP (paraphrased) to the results
of the sleep study was this, "You are a high achiever. It is
difficult to understand that you had such difficulties achieving all
that you do." No one realized just how difficult it was for me. I
certainly was not proud of the fact that I took naps all the time or
crashed before everyone else. It was just me.
When I was 53 and highly stressed on a number of levels, I told my
doctor, "Sometimes I feel so tired that if I can't lie down to rest
I think I will vomit. I feel physically ill if I can't rest." She
said, "That tired??? I think we better get you in for a sleep study."
Following the first sleep study I was diagnosed with Periodic Limb
Movement Disorder. I was not aware of it, because I was not fully
awakened by the movements, but enough to lift me out of the deep
levels of sleep. Two years later when the sleepiness seemed to be
overcoming me I went for another sleep study in a more sophisticated
setting and this time they monitored me for two nights and all of one
day. The results showed narcolepsy...two main indicators were the
excessive sleepiness during the day and the rapid eye movements at
the wrong time of the sleep cycle which was picked up on the
computerized monitors. No cataplexy that I am aware of. No
hallucinations upon falling asleep.
So I have two sleep disorders. The medications I am now on have given
me a whole new lease on life for which I am very grateful.The doctor
in charge said that I was one of 20 out of thousands that come
through the clinic who had been diagnosed with narcolepsy at midlife.
I am 55.

yes, and it sure does my heart good that so many responded.. Just proves that
our voices are heard when we do speak up in volume and quanity.. Thanks.. Dorla

Dear Marilyn,
Thank you for your reply. So glad to meet you. I'm going to
work in a sleeping laboratory. My boss is the doctor who found out
my problem. He was suprised that I want to join this program. But
he also knows I'll take care the patients more carefully. I
think that's why he chose me to take this job.
My interest is in motivation. I don't like drugs. Sometimes
I look at Ritalin and wonder: Am I really clear if I take medicine?
When playing with my band, I won't fall asleep so easily. So I
try to figure out the relation between motivation and sleepiness.
Although playing guitar on the stage is my favorite thing, still
can't stop the sandman :~ Once we were playing a heavey metal song,
suddenly I turned around and said "I'm sorry." to our bassist. Then
I held my guitar sleeping on the stage! Haha!
Sure I will be glad to share my paper with you all. And thank you
again for your response,Marylin :)
Take care!
Dee

Thanks for your input on the aloe vera juice and flaxseed oil. I have
heard good stories about this combination. So you can just buy the
aloe vera and flax seed oil from any health store right? And does
the flaxseed come in a tablet? Thanks I am going to try this out and
see how it goes for me, ;) It seems for some reason I feel that
this may be one of the better treatments for the redness due to the
fact that you take these juices internally rather than just adding
creams to the face all the time and not seeing no improvements. They
say that rosacea may be caused due to an unhealthy kidneys, colon, or
immune system which are all located inside us and rather than putting
a cream externally we need to fight the problem face to face, and
while taking the aloe vera and flaxseed you can still use a cream of
any kind that supposed to help fight the redness. Well Im going to
start my test on this tommorow and I hope others try this as well so
it will be a project and we will report how it goes every week. Well
thanks and good luck.

me this has worked very well however i would recommend buying the
flax seed tablets rather then the oil because the oil is totally
grosse......It has reduced the redness and outbreaks, however i did
go out on the town and got really drunk, the next day ....hello
red,bumpy face.....and it took another week to clear up again....But
im pretty sure this wont be a miricle cure but for me it has made a
big improvement but not cleared it up.

How quick Nike was to respond to the outrage of the disabled community!! Has
everyone seen it? If not, I will post it here.<br

whoever posted on the database Metrolotion and Metrogel,
thanks for your input! I neglected to add email addresses
in the table so that if someone wanted to ask more questions
they could email you personally. anyway if you don't want
to edit your record with your address I understand. I added
the email address field to the database.
Brady Barrows
group owner

Dear Dee,
Wow, it was so great to hear from someone so far away. I live in the
United States in the state of Louisiana. I can only begin to imagine what you
have been through before finally receiving the correct diagnoses.
When you finish writing your paper on Narcolepsy, would you mind sharing
it with me? I am truly very interested in this.
Keep in touch. It was great to hear from you.
Sincerely,
Marilyn

Wheellez,<br
will post questions and comments as you see fit.
Particularly, we'd like to get to know you, so tell us a bit,
give us a short bio. Again, welcome.<br

Hi....Im doing the aloe vera and flax seed oil combination and for me this has worked very well however i would recommend buying the flax seed tablets rather then the oil because the oil is totally grosse......It has reduced the redness and outbreaks, however i did go out on the town and got really drunk, the next day ....hello red,bumpy face.....and it took another week to clear up again....But im pretty sure this wont be a miricle cure but for me it has made a big improvement but not cleared it up.

hope this helps

Thanks Coralie

Dorla, <br
something like this. I really wonder if the people in power
know their advertising dept printed this. Thanks for
the info... I will be sure to send off my own
comments too.<br

I sounds to me like it is highly possible that you do. Your father's
cataplexy is a definite marker. Also I have read that the male children of a
diabetic parent have a slightly higher incidence of narcolepsy. The only way
to know is to see a neurologist for testing. But, on the other hand, if you
are raising 4 children on your own, you have a right to be tired! Wow, I'm
impressed. Good luck to you.
Sincerely, Paula Smith

I found this group through another rosacea group I belong to, and
thought I would share info I learned there about I product that has
helped me. I am not a paid spokesperson for anyone, by the way :)
I have had rosacea for 12 years, and found a product this summer
that HAS helped me -- Cutanix DRL. It has reduced my redness by 50
percent and nearly eradicated my papules. Because my skin is oily,
I still have the occasional pustule. It has definitely not worked
for everyone that has used it, accroding to feedback, but it has
worked for me so a sample might be worth a try.
You can get a free sample (the best way to try it because it is
pricey) from Cutanix by either calling 1-888-751-SKIN or via e-mail
at customerservice@....
If you do try a sample, my advice is to not apply immediately after
a shower or bath (give your pores a chance to close), and to not use
it on your entire face if you have oily skin. Others I know apply
it on a wet face.
You can read more about Cutanix DRL by visiting
http://www.cutanix.com/home.asp
and clicking on "Consumer Center" at the top of the page.
Lonne

Thanks for posting your results on purple emu.
I have added a DATABASE table on the group site
to organize different treatments so that the group
can read the results. If you would add a record
to the question there this would be a beginning.
Go to this url
Click on DATABASE in the left frame. Then
click on the question in the right frame,
What treatment for rosacea dd NOT work for your?
Click on ADD RECORD and fill in your results.
There are other databases you can read and post
on this page. Thanks. Databases make it easier
to find products and treatments rather than
sorting through hundreds of emails.
Brady Barrows
owner Rosaceans Group

Hi All,
I've joined the group because I want to learn more about narcolepsy.
My father is 74 years old and has had cataplexy attacks for 12 years
now. I am suffering from excessive tiredness during the day and I
have fought these all my life.
My question is do I have narcolepsy? :-) Hard one I know.
Briefly, I'm 43 male, single dad of 4 kids. 10, 8, 6, 3.
I went through a clinical depression 4 years ago due to a separation
and divorce. Before that I could get pretty tired during the day but
it always seem to come around 2:30pm. I fall asleep alot while I
reading the kids to bed only to wake up a 1/2 hour later.
I never sleep through the night. I always wake up 2-3 times a night.
I always have narcolepsy in the back of my mind because of my father
but I've always pooh poohed it.
Now I've successfully battled my depression and anxiety and have been
working towards the future. I take Paxil 30mg a day and have
recently weaned off clonozepam(Klonopin). July 4, 2000.
I belong to a support group involved witht eh book Potatoes Not
Prozac and we use food to help us raise serotonin levels, even otu
blood sugar etc.
Could the midmornings and mid afternoon tiredness be about blood
sugar. Both my P's are bordeline type 2 diabetes.
Do you guys have some questions you could ask me that could show I
might have Narcolepsy?
Thanks
Tony

I did get a chance to talk to Angela the other
day, she is doing pretty well. She said she still has
some pain though. Angela and her man went away for a
while (for the life of me I can't remember where, I'm
losing my memory too young!)<br
you more, but I was a little pre-occupied with some
bad news I received the day before I can't really
remember much else. <br
for a while, reading everything but I have not been
up to posting lately. I will try to be more active
now.<br

Dear Dee,
That was a great letter. I was very glad to hear from you, and also very
impressed at all that you are accomplishing , in spite of this disease. We
all know what it is like and you are not alone. Boy, the ignorance of the
medical profession amazes me at times!
I think it is a wonderful idea to write your paper on narcolepsy. Think of
how many people will learn about it for the first time. Maybe even someone
who has it, but thinks that he is "just lazy"! You will have a lot of good
resources in this group of people and I will be glad to help you in any way I
can. Thank you for your story.
Sincerely, Paula Smith, Michigan, USA

I have read posts from 2 weeks ago about the aloe vera juice and
cream. I guess alot of you were talking about trying it!. But now a
few weeks have passed and wanted to hear if anyone has had any
success with the aloa vera juice. If you have been using it and
drinking it Please reply back or post up about your experience with
the aloe vera juice. This is just an update for those who started
that a few weeks ago. Thanks

Hey, Angela, I see you stopped by. But you didn't
leave us any word about how you're doing. I know
several of us are concerned and wondering where you are
in your recovery...<br
Colorado!<br

Dear all,
My name is Dee, a graduated student who live in Taiwan.
I've never thought that I can find a place like here 'cause
no one believe that I can't control my sleep timing. Even though
the doctors.
There is little information about narcolepy here. I've been
diagnosed many disorders, like major depression, bipolar, even the
schizophrenia! It's hard to tell others that I just feel sleepy.
Finally a doctor found out what wrong it is. Before that, I had two
car accidents and almost drop out from school because I often fall
asleep.
I study so hard just try to prove I'm not a lazy person. Now I
decided
to write my paper about narcolepsy. For me, also for other
narcoleptics in Taiwan.
In these years, loneliness always comes to me. I don't know why I need
so many naps. I don't know if there is anyone like me, feel depressed
easily when trying to stay clear. What a suprise when I found this
group!
Thank you for your patient to read this. And please forgive my
grammar and spell. Hope you all have a nice day.
Dee

Yup, exactly thanks for replying back by the way. I just have wasted
to much time on creams that have said its proven to work but dont.
I know from what alot of other people have said to as well that
metrogel is always prescribed from a doc and just on others input on
that it doesnt work. So thats another one. Of course we gotta keep
trying to kick this rosacea's ass but I guess the next thing Im going
to try is maybe going to the health store and buying some of that
aloe vera juice and drink 50ml a day and use the aloe vera 99.9%
cream on areas of my face that have the redness. This is yet another
thing that has been said that its proven to work "gauranteed" but
that dont mean to much to me, the only way I'll know is if I try it
so Im going to the health store tommorow and getting myslef aloe
vera. Well I'll keep everyone updated on this. ;)

We need somebody to put together a database of what products have worked for
what people. For instance:
Product | Worked for this many people | didn't work for this many people |
made things worse
PurpleEmu 2
4 1
Minocycline 3
9 4
Photoderm 6
5 3
Retin-A 0
7 4
etc etc. Obviously these numbers are made up. But, you get the idea :) I
think this would be the easiest way for us to all begin to rule out some of
the products that clearly don't work.

Dear Cath,
Thank you for responding to my question aboyt N and heredity. Like you, I
had one parent with the disease. Luckily forme, because my father was a
doctor, my mother was diagnosed very early on. Then when my symptoms began,
we all knew what was going on. That was 33 years ago and I have always taken
Dexedrine (60mgs./day) and have been able to control the major symptoms quite
well. But, as I said, I worry about my grandchildren and my greatneices and
greatnephews. I guess only time will tell.
I have only just found this forum and you are the first person to contact me.
You are also the first person (besides my mother) with narcolepsy that I
have ever spoken to!
Thank you again and please write any time.
Sincerely, Paula Smith, Michigan, USA

Well a while back I posted an article about a cream called purpleemu,
which is kinda popular, but it is a redness and blemish control cream
that suppossed to mostly target people who have skin problems like
rosacea. The sales pitch was its gauranteed to make the redness go
away or your money back after 30 days. Well guess what I better get
my money back cause it did not seem to help in the slightess bit. I
used it twice a day everyday for 4 weeks straight. Before bed and in
the morning. Well for me personally would never try any of that
companies products again. So just thought I let everyone know about
some of these creams that are out there and trying to find one that
may help cause there are far to many different creams out there from
people just trying to make money. So this is my input on this one.
And now I got to find something else to try. When are we just going
to have something that works that someone can say this is what u need
go buy this at a health store and for it to be true. This is just a
game using a cream and finding out it dont work and then move to
another cream, so on and so on. Well bye for now

Thank you for the kind welcome. I am happy to be here and pleased that so many
of my old friends are here.<br
the future

I was diagnosed with N. after it came to light that my grandfather
had suffered similar symptoms, and subsequently a DNA test showed
that I carried the relevant genetic marker. My grandfather was never
properly diagnosed,so it is more than likely a similar case with
other relatives.My family are now aware to the symptoms, heaven
forbid should anyone else show the condition, at least allowing early
diagnosis and treatment.
Cath.B

And welcome to sf and cutey!! Please post something about yourselves as well as
questions and comments as you see fit.<br

Scientific American Magazine www.sciam.com has an excellent article in
the January 2000 issue. It is titled Narcolepsy, by Jerome M. Siegel. I
would recommend that you read the whole article. It is available for free on
the net.
The following is a direct quote from the article
" Most narcoleptics have no narcoleptic relatives, and the disease does not
arise until the second or third decade of life. In addition, in 75 percent
of cases in which narcolepsy occurs in an identical twin, the other twin is
unaffected. These findings indicate that environmental conditions are
important in human narcolepsy. These environmental conditions may cause
damage to the hypocretin/orexin system, mimicking the symptoms caused by
mutations, or may prompt damage to closely linked systems of neurons".
Dwain Ingram.

I've done my part..lol.. Surely we need some rebuttals to help us make a good
decision..lol Dorla

I am a RN and a certified natural health professional committed to
sharing information to help people with any problem be symptom

I recently discovered some links that may be of
interest to you regarding the advantages of
unrefined sea salt over processed salt. Here
they are
http://www.watercure2.com/interesting_facts.htm
http://www.realsalt.com/
http://www.celtic-seasalt.com/
There are probably more links I am not aware
of but since many manufactures of salt like
Morton add dextrose to salt I mention this
in Note number 9 in the endnotes of my book,
Rosacea Diet. The abovelinks will be added
in a future revision. The information on salt
at these links may help your rosacea. I have
always used either sea salt or kosher salt,
but from now on will be using only unrefined
sea salt, and more of it!
Brady Barrows
author of the Rosacea Diet
owner of the Rosceans Group

Whats the point if you have to mutilate your face in order to find out?

This ought to liven up the posts...I have been
hearing a lot about ADAPT and MiCASSA ...I don't know
anything about it much and have started searching to learn
more about it. It somehow has something to do with
Bush and the Georgia case called Olmstead case. There
was political talk about how Bush as Governor didn't
manage correctly and the Olmstead case was mentioned at
the time. But, I won't have any opinion until I
understand all this. I sure hope others do respond and that
way some of us who aren't aware of the platforms and
records of the runners will at least have something to
make a judgement. Dorla

It is a small area (about the size of a pencil eraser) removed where
the most redness/rash is present, the area is numbed first, a small
round bandaid is worn over the area for 5 days. I can't even see
where is was done. The specimen is sent to a lab for pathology, it
takes about a week. You will then know for absolute certain what
type of skin problem you are having. I wish I had done this first.
I think too many doctors are interested in handing out Metrogel and
anitbiotics. The thing is, if you have a condition that is not
rosacea, it will not clear up no matter what you do without the
proper medications and will certainly get worse.

I don't want to get into any political discussion
here, but I would like to know if anyone feels one of
the candidates is better than the other for the
disabled community. If so, why?<br
your comments.<br

well, well, a big welcome to txagbonfire,
bignut47 and bobo_wheels !! Thank you for joining us.
Share a little something of yourselves with us. Let us
know what would be a good night to chat..that goes for
everyone; I'd like to see the weekly chats start up again.
Hope you newcomers find the club informative and
fun.<br

Hey,
So they actually take a chunk out of your face where the rosacea is active
or how does it work?
Nick

Yes, I have tried the face doctor soap. I beena rosacea sufferer for 40+ yearswith permanent redness and spider veins.I don't think the mites are my problem. The soap did nothing for me except I think it made me alittle sick. What most has helped me with the redness is the cutanix , lots of distilled water to drink good vitanims and minerals and washing my face using the creamy aveeno baby wash. I also had help with the redness using the LTD Disc but I didn't like the feeling on my face. I have been so red at times people thought I was having a stroke. And I try to watch my diet a bit because I know if I eat too much unhealthy foods it makes me redder.

Josh,<br
complications? Please let us know how you all are doing...<br

Howdy, Sadlaughter, welcome to the club... I'd be
most interested in hearing how you came to choose that
screen name. Are you disabled? If so, what's your level?
And what is your disability? Again, welcome... feel
free to post any and all questions or comments (within
the normal club guidelines, obviously...lol) and
we'll see if we can't help get them answered.<br

Hi, I was diagnosed a year ago with rosacea and prescribed the usual
anitbiotics and Metrogel, I don't have to tell you that it didn't
work. I consulted another dermatologist and had a biopsy done that
confirmed her diagnosis of discoid lupus. I have been on
hydroxychloroquine for a month and can't believe the difference. The
reason for this post is, please demand a biopsy, it doesn't hurt and
will definately confirm or discount the diagnosis of rosacea. I spent
a year with different creams, pills, and ointments all for nothing.
Good Luck.

I have been doing alot of research about the best cures for rosacea.
It seems from gathering information that rosacea may have a
connection to the kiddneys or others say the anal, heh. But however
rosacea may be cause from something internally and the best way to
diagnose the problem is to get something inside you to fight that
internal problem by drinking something. It seems that alot of people
are beginning to be more aware of this and have tooken upon
themselves to drink aloe vera and flax seed oil, and say to have seem
inprovment. Oh yea and about Demodex mites it seems that rosacea
sufferers that have enlarged pores and reddness may have alot of
demodex mites. Those little bastards live in our skin and cause
inflammtory reddness. The best way to kill them is a seabuckthorn oil.
has any one tried the face doctor soap and have had luck with it? But
anyways I think we should all try drinking aloe vera and flaxseed
internally and see if we have any luck. be sure to post up if you do.

Yes Paxil is an anti depresent. They feel that if you blush alot and
get emmbarressed easily you may be depressed, and redness may be due
to this possibly.

Welcome to our new members, Chris being the most
recent. Hope you enjoy your visits here. I apologize, but
I missed the name of the person who joined on
Tuesday. Please post a little about yourselves and let us
get to know you.<br

Yeah Marilyn I had a heck of a time trying to get my insurance to pay for my
meds.
My doc started me on 400mg of Provigil a day and vivactil(for cataplexy
although it does'nt work worth a S%#$!) They gave the pharmicist that
"pre-authorized" load of BS, and I called them to find out what the heck was
going on. I got the run around time after time. Finally my docs nurse
heard of this, and how long I was going without my meds because of it, and
after a phone call from her with her not so gentle explaination that I have
to take these everyday for the rest of my life(they were trying to go
against the amount the prescription called for) they have not said a word
since. And since then I have been put on two different level 2
drugs....level 2 are those which are considered narcotic or addictive. They
did not say a word, no pre approval, nothing! The 2 drugs were Ritalin(did
not do a thing for me), and dexedrine which I am still taking--it is what
they sell on the street where it is know as "speed"-dextroamphetamine. Of
all things I would have expected trouble from the insurance about these 2,
but like I said the approval went right thru.
So I would press your doctor to call your insurance. Being a doc is not
just the medicine, but it also includes making sure that your patient is
treated in the way that you perscribed.
Sincerely
Chris

Lee,
My experience is like yours -- I don't have the extreme symptoms of others on
the list, but even the drowsiness is difficult, and can interfere with work,
school, etc.
Falling asleep in class was always a problem. Years ago, in my first grad
school experience, I fell asleep in 3 out of 4 finals, and took naps while
taking the CPA exam! More recently, in my 2nd grad school experience, I just
dozed in MANY classes, and being in church work, falling asleep in meetings
or (much worse) worship is a real challenge. My joke is that I never fall
asleep when I am preaching (although having read this list, I should probably
qualify that to read that I have never YET fallen asleep when I am
preaching). Like you, I am newly enjoying wakefulness, although I am using
Ritalin. What a nice change -- not perfect, long-distance driving is still a
challenge -- but overall, an amazing improvement.
Well, good to hear from you. My mother, also a PWN, is also named Lee
(Annalee for long), and was diagnosed at about age 50.
Blessings,
Susan Zencka
Elmhurst, IL

Hi everyone, I'm new to this group. I was so happy to find others
that know about this illness, Narcolepsy. I'm 50 and recently
diagnosed. Can any of you tell me if you have had problems getting
your insurance to pay for the medications you are on for this
condition? When I went to get mine filled at the pharmacy I was told
it had to be pre-authorized. So far my physician hasn't taken care of
it but he has only known about this for a couple of days. I'm on
Desoxyn and it is very, very expensive. If my insurance turns me down
for coverage on it I'm in big trouble. I tried several other kinds of
med but nothing worked but this one. And even on this, I still snooze
more than I should. I would appreciate hearing from any or you.
Marilyn

Jim,
Only a physician can diagnose rosacea and you could have something
else, so it is important to know what you have. See this url
http://rosaceans.com/html/tip.html
Note the sixth item, "Rosacea May Be Misdiagnosed for another Disease"
Self diagnosis is not a good idea since you may be wrong.
Rosacea can be controlled by conventional medical treatment through
a physician and there are good reports from using alternative treatments
such as Rosacea LTD III. However, there is no cure and only treatment
to control it. See this url
http://rosaceans.com/html/cause.html
There are many links to PRESCRIPTION or NON-PRESCRIPTION sites on
the control of rosacea at these urls
http://rosaceans.com/html/pre.html
http://rosaceans.com/html/non.html
There is no known scientific report linking rosacea with diabetes but
I think sugar has something to do with both diseases which are
vascular disorders. Diet can control your rosacea and your diabetes
but as I said before will not cure it. Personally I think sugar has
damaged
your immune system.
Brady Barrows
author of the Rosacea Diet

I just sent my invitation to another good friend
...so hopefully we'll get some new members. Gee.. what
a long drive every day Ray..I'll try to be here
tonight for the Chat. Just getting my self and house back
in order. I had a lot of catching up to do. Dorla

Hi, Lee again. I live in British Columbia and had my sleep study done
at the University of British Columbia Hospital. The doctor in charge
of the program there is a psychiatrist called Dr.J.A. Fleming. They
have a very sophisticated sleep study unit there and I cannot say
enough good about them. I know others who have been fortunate enough
to be assessed at this sleep disorder centre....long waiting list...
and they too rave about Dr. Fleming. Maybe this info is useful to
you, Pete in Alberta. I read your message post post...lol

My name is Lee. I am a 55 year old woman who has just been diagnosed
with narcolepsy. My greatest complaint has been drowsiness when I sit
for awhile to read or watch TV. I don't think I have ever seen a
movie through completely for years. I stood for a good part of my six
years of university so I didn't fall asleep in class. My symptoms are
very mild compared to some of the posts I have been reading. However,
the drowsiness has been a real problem and source of embarrassment
for me since I was 19. Two years ago I was diagnosed with Periodic
Limb Movement disorder which I was not aware of and subsequently the
narcolepsy . The medications I have been prescribed are Zopiclone for
the PLM and Modafinil for the N. I have had very good results with
them after trying all sorts of other medications. I cannot describe
how wonderful it is to have the gift of wakefulness. I am glad to see
that the group exists.

Hi,
Im new to the group and just now starting to learn about my condition
which from everything ive read is rosacea. I have moderatly red
splotchy cheeks but no postules or swelling of the nose or anything
like that but if i exercise or do any strenuous work it really flares
up and sometimes i experience a bit of itching. It sometimes fades
but most the time its always there. Im male 40 and type 2 diabetic.
Is there any correlation between rosacea and diatbetes? All the web
sites ive been too have not mentioned it.
So i guess my questions are:
1. What over the counter type remedies seem to help the most?
2. And are any of the sites like Rosacea III really worth the money
or are they all just a scam?
Thanks for any input or advice.
jim

Tuesday will be the 1st anniversary of this club.
We stand at 59 members right now. Anyone think we
could hit 75 by Tuesday??? I do! Let's see if we can
hit it... and how many of you will post a message
about ANYTHING between now and then. Thanks, Angel, for
starting this club!! :)<br
Jim my regards. <br

Hello, my name is Melody. I am a 42 yo homemaker ( had a rather bad
experience with my last employer re: narcolepsy-haven't worked since)
and was diagnosed about 15 years ago. I, too, have all the
symptoms. You are the first that I have heard mention the buzzing in
the head. That has happened to me since the very beginning. When it
happens to me, it ususally is a signal that shortly I will be
paralysized (as in sleep paralysis but I am awake) and shortly
thereafter I start the hallucinations. My doctor (15 yrs ago) told
me that he had never heard of that happening while the narcoleptic
was actually awake, only when they are falling asleep or waking up.
It seems to build up and taper off and then build up again.
Sometimes I feel like my head is going to explode. Once I am
actually paralyzed and hallucinating the pressure and the buzzing
(kind of the way I would think tingling would sound if you could hear
it) subsides. When I am able to come out of it, I feel very relaxed
and also am extremely warm (kinda like a furnace-from the inside
out). I am totally aware of what is going on around me (even though
hallucinating-I can still hear the TV and other people talking) I
just can't move or speak (like a cataplexic attack-although I don't
have buzzing in head or hallucinations with those).
Melody
cataplexic@...

Hello all, Sue Carella, co founder both the American Narcolepsy Association
and Narcolepsy Network sent the following message to me:
GHB is short for Gamma Hydroxybuterate or "Gamma" has been undergoing
experimental trials for about 15 years. GHB is a natural substance which
controls cataplexy without side effects. It is not an antidepressant. A
slightly altered version called Xyrem has been produced by Orphan Medical
(pharmaceutical company) and has successfully undergone clinical trials and
is awaiting FDA approval. Unfortunately a huge controversy over the use of
either medication has arisen because GHB has been used by deviant elements
in society. As a result, GHB has come to be known as the "date rape drug."
I don't believe there are more than two dozen cases of date rape in which
GHB has been used. As regrettable as date rape is, no matter what substance
is used, tens of thousands of persons with narcolepsy are being deprived the
use of GHB to control cataplexy. I haven't participated in either the
experimental nor clinical trials, but people who have say that GHB, and to a
lesser extent Xyrem, controls cataplexy as well as some of the terrifying
experiences we narcoleptics experience during sleep. Of course, there are a
few individuals who haven't responded well to GHB. However, for the
majority of persons with narcolepsy, GHB works well.
Be sure to watch the news on ABC tonight
Nancy Valencia

Report one:
Well, The Neal's yard cream arrived. I thought I'd try it this
morning. It is a thick cream, very white (thanks to the zinc oxide)
and it goes on white so I had to blend it well. It gave me a paler
skin and vaguely covered the pinkness. It wasn't plastic-y, just
shiney from the oil base. But it felt fine. So I put my makeup base on
top and it felt like a mask. Ugh. And then I realized I smelled like a
bag of sunflower seeds with a hint of beeswax. I washed it all off and
started over since I didn't want to smell like trail mix at work. LOL.
But I think the cream will work well on weekends for yard work or
doing things outside, when I don't wear makeup. It felt fine, I just
smelled strongly of sunflower seeds! I'll be testing it in the cold
this weekend when I volunteer at a 5k race.
Pam :-)
--- In rosaceans@y..., "Pam Tobey" <ptobey@a...
<snip

Paul and Muriel,
Thank you both for your emails, I will be in touch.
Appologies for the delay in responding.
Cath.

Hi, Steve (guyinachair). Welcome to the club.
Give us some background on yourself so we can know you
better. I'm AB and joined when I met and became involved
with a woman with sci. Since that time, I've made
dozens of new friends here. Hope to hear from you
soon...<br

I have surfed the clubs to find chatters but I
never seem to find anyone. Let me know when and where
and I'll try to be there too. Have been busy putting
my house back in order and have had many errands and
apts. to do so haven't been sitting here "all the time"
as my family thinks I do.. lol..As my hubby works
nights and doesn't get up until noon I do a lot of
housework in the evening. Dorla

Hi,
Does anyone know anything good to combat the pastule side of rosacea?

Well, I'm just curious to know where people are. Me! I'm in Georgetown,
South Carolina, USA which is South of Myrtle Beach and north of
Charleston. I'll be relocated soon to Bristol, Tennessee. A job decent
paying job, Finally!
Pete Ackermann

Howdy, Jasper<br
responsibility? Does it involve more hours at work or is it just
like a change of departments? I'm glad too that Angel
had the surgery and I hope she gets more online time
soon. I also miss her and how she would make me laugh,
but I know that her priorities now are more on
recovery, and of course, Jim. I'm sure we'll see her here
soon.<br

Re: The list awakens!
To me this is the yawning of a brand new day !!- sorry - Before I
came across this group the only listing I did was prior to going
horizantal.
As to why there has been a flurry on the message front I have
considered several possible influences.Could it be global warming and
the affect it is having on the eyes-pack ? Did something happen
during the recent alignment of the planets ?, as we know that a kick
up Uranus often results in increased activity ,or was it an over-
looked prediction by the lesser known Narcodamus ? Though I suspect
that people are realising ,myself included ,that being part of a
group is more benefical if you join in contribute to it.Mind you
having read this through I think I`ve found an exception !
No more I promise,
Appologies,
Cath.

Coralie,

Hi, my names Kat Hummel and I also gave up on antibiotics. Even if they do help, its not healthy to stay on them the rest of your life. Yesterday I just bought some of that drinkable liquid aloe vera. I've tried flax oil seed and it seemed to make my face redder. I only gave it two days though. Did you notice a negative effect at first? I also bought alpha lipoic acid (1000 mg) that was suggested from someone else in the group. It has seemed to help, you can find it in any health shop. It comes in capsule form. I am stiil on my first bottle, so I have yet to see if my face gets worse without it, but I'll let you know. It seems to help clear up my face over night when I sleep, along with a multivitamin.

Write back if you come across anything else,

Thanks, Kat from PA

Coralie Gardiner <oceancoral163@...

Hi all.....I did the whole antibiotics thing and found progress was slow and there were a lot of negetive aspects......So in frustration i decided to do nothing and just deal with it so what if i dont look beautiful....However i did find that swimming in salt water helped out a lot i dont know why...Anyway after 6 months of no treatment at all there were some really good days and some not so good days, which is the same for those taking perscribed treatments....One week ago i walked into a health shop and decided to try the natural way... i walked out with Flax seed oil to be taken orally and liquid aloe vera 99.7% pure also taken orally. And i have had results already not really dramatic results but results never the less.

I will keep you all posted on how i do..... however the flax seed oil tastes absolutely terrible next time i buy some i will be sure to get it in capsule form.

I often read about what other combinations of natural remedies other people are taking and it seems like an awful lot so i am taking things slowly so i can find out what is beneficial to me. However i would like some ideas on other natural remedies other people are taking so i can walk into the health shop and already know a bit about what i am looking for, so the shop assistant doesnt sell me just anything with "For you skin" written on it, any help or advice would be appreciated
Thank you very much Coralie

[INLINE] Coralie Gardiner [INLINE]

To unsubscribe from this group, send an email to:

Hello everyone!
Suddenly this list has come alive! So has the other narcolepsy list on egroups.
I've noticed there's is a flurry of activity also on other lists to which I
subscribe. I can't help but wonder what the cause for this awakening is. Solar
flares? Is it a seasonal thing? I'd appreciate your thoughts.
Nancy

Hey there, Jasper, how's it going? Haven't heard
from you in a long time. Your dad get any new patches
lately?<br
is she?? Far too quiet, I think. Angela, post here
and let us all know what's happening and how you and
Jim are doing. I'm most concerned about
you...<br

Well, I've just ordered two barrier creams to try so I'll post on how
they do. The first is Neal's Yard Remedies Baby Barrier and the other
is Mustela Bebe Vitamin Barrier Cream. Both are for babies, so
*should* be gentle on the face.
The Neal's Yard ingredients are simple: Cold pressed sunflower oil,
vegetable glycerine, zinc oxide, beeswax, roman chamomile essential oil.
The Mustela says: Active Ingredients: Zinc Oxide (10%)
Inactive Ingredients: Water, Mineral Oil, Propylene Glycol
Dioctanoate, Methyl Glucose Dioleate, Titanium Dioxide, PEG-45/Dodecyl
Glycol Copolymer, Glycerin, Ceresin, Ethyl Linoleate, Shea Butter,
PEG-8, Panthenol, Potassium Sorbate, Fragrance, Magnesium Sulfate,
Methylparaben, Caprylyl Glycol, Propylparaben, Sodium Polyacrylate
I'm hoping the Neal's Yard works best since the ingredients are
natural and simple.
There were a ton online when I did a search, most for industrial use
on the hands and body, and those didn't sound good for the face! One
turned up called Proface, that is a barrier applied before stage and
clown makeup. But I went with the other two to start. I'll let
everyone know how these two work since winter is setting in with a
vengeance in DC!
Pam :-)

Hello Susan and other sleepy heads,

Congrats to you for being the first--and it looks like--the ONLY one to ask about Marguerite Utley's book on narcolepsy. I've gotta LOL at myself because I can clearly see the book sitting directly behind my monitor,
yet I failed to write its correct name. I've said for many years that everything I do in life, I have to do twice!
Marguerite Utley's book on narcolepsy is Narcolepsy: A Funny Disorder That's No Laughing Matter. (1995) (166pp) Order the book directly from the author: Marguerite J. Utley, PO Box 1923, DeSoto, TX 75123-1923 Hardcover edition costs $20.00; Paperback is $14.00 Phone number: 214-223-2783

Marguerite is one of our national leaders and is contact for the narcolepsy support group in northern Texas

QUICKIE QUIZ FOR KNOWING NARCS: Another publication which no narcoleptic should be without has an orange cover. Does anyone know the name of this excellent resource on narcolepsy?
Nancy

Hi Angela,<br
everything has gone well with the op.<br
hon.<br

i too have the buzzing and vibrations in my head. it makes everything go
black and i feel like i'm going to pass out, but just before i do, i'm ok. i
don't know what causes this. drs couldn't explain it. if anyone knows, let me
know!
crystal

Oh and I very sorry I didnt mention....Ray my
dear friend...Thank you soooooooo very much for
watching over the club...Your doing a great job... your a
great friend...Also welcome to all new members...Hope
you can post more letters, and I will try to
answer..Take care all...will talk later on...be well...<br
Love angela

Thanks for your prompt reply, I was beginning to think I`d pushed the
wrong buttons again. I`ve been following the messages for a while,
but have never known what I should say in return. Knowing where to
start is always a problem.
I was diagnosed with narcolepsy about 3 years ago, thanks to an
alert G.P.,and have been struggling to come to terms with it since
then. I live in the U.K. and information on the condition is next to
none so my discovery of this group has been a breath of fresh air.
Although I knew I was not alone with my condition, the ability to
accept that this was happening to me blocked any comfort being taken
from the fact that there were others out there going through the same.
It has taken a while but I guess the only way I`m going to
understand what is happening to me is to start asking questions, and
hopefully in return may be able to answer someone elses. I suffer
what appear to be the somewhat common symptoms, excessive sleepiness
(particularly when travelling and after eating ),automated
behaviour,cataplexy,sleep paralysis and hallucinations. I also
however suffer from an intense vibration and buzzing in my head,
almost to the point of loss of conciousness. This happens at anytime,
it doesn`t preceed any other symptom nor does it occur with any
obvious stimulus. The frequency and severity is inconsistant and is
the most upsetting side to the condition. Does this `ring bells` with
anyone else ?
Glad to be amongst you
Cath

Hi all.....I did the whole antibiotics thing and found progress was slow and there were a lot of negetive aspects......So in frustration i decided to do nothing and just deal with it so what if i dont look beautiful....However i did find that swimming in salt water helped out a lot i dont know why...Anyway after 6 months of no treatment at all there were some really good days and some not so good days, which is the same for those taking perscribed treatments....One week ago i walked into a health shop and decided to try the natural way... i walked out with Flax seed oil to be taken orally and liquid aloe vera 99.7% pure also taken orally. And i have had results already not really dramatic results but results never the less.

I will keep you all posted on how i do..... however the flax seed oil tastes absolutely terrible next time i buy some i will be sure to get it in capsule form.

I often read about what other combinations of natural remedies other people are taking and it seems like an awful lot so i am taking things slowly so i can find out what is beneficial to me. However i would like some ideas on other natural remedies other people are taking so i can walk into the health shop and already know a bit about what i am looking for, so the shop assistant doesnt sell me just anything with "For you skin" written on it, any help or advice would be appreciated
Thank you very much Coralie

[INLINE] Coralie Gardiner [INLINE]

Hello everyone, I'm feeling fine..was scared but
things went well...Thank God, I got the surgery done..I
had a piece of bone floating around which would had
pierced my spinal cord... and the herniations were very
bad..I came home late sunday night..but Im feeling
pretty good so far...the hip really doesnt hurt that
much...But I pulled my back muscles the other night trying
to get comfy...which is very hard with this collar
on... But Im trying to get some help at least 3 times a
week... and a nurse to come twice a week..A physical
therapist is going to start to come this week...As for my
Honey...He was a nervous wreck..And in a way that was good
because it kept me focused on how he felt and not me...He
gave me a golden gardian angel...and I also recieved
from an older friend a rosary... which was sooooooo
sweet of him..when it was time for me to go in I pinned
the angel on my honey's collar..and put the rosary
beads around his neck. And kissed him goodbye. But here
I am..doing rather well i must say.. Please feel
free to write back and ask any questions.. ok? Feels
good to be here!!!!!!!!!! <br
Angela

Cath,
i can hear you!!
Susan Z.

http://www.chinamystique.com/
I did a Google search and turned it up.
Pam :-)

Where can you get this soap? I called a couple of
places and they hadn't heard of it.

Just trying to get through, I am new to this technology so if there
is anyone one out there,can you hear me?
I have lots to say on the subject of narcolepsy,but am finding it
more an more frustrating trying to get somebody to show any genuine
interest. If your there HELP !!!
Cath.

hi ray, yep thanx your links have been very
helpful. There's just so much info....i think i could
write a thesis on it &gt;:o)<br
sister is doing better right now. Jane is in a rehab
centre and basically recovering from her back injury.
she's meeting all kinds of new people right now and
learning to deal with what happened. although it's hard
for me to imagine what's she's going through, she
shows this incredible strength and will to move on. I'm
just trying to be there for her as much as i
can....<br
to check out a site which is responsible daily for a
laugh on my face: www.
twistedhumor.com<br

Please change my address from Jbahr007@... to
Ibechristie@...!
Christie

Todd, I loved your message; I always like reading
messages from people who make me laugh and who don't take
things too seriously all the time, which is what you
appear to be. I also have trouble with the voice chat
thing... have for some time. So I don't even try it
anymore.<br
didn't post... tell us how you are doing, will you? We
are all concerned. How is your honey doing? How are
the kids? I miss hearing form you.<br
chores and stuff, you know... after all, isn't that what
Saturday is for until the games come on??????
:)<br

Christie B.
Upstate, NY
35
Married
Children (4 boys..13,11,10,9)
Dxed as "text book" Narcolepsy in 1995
I have yet to be able to figure out what "text book" N is...if there is one
thing that I have learned.....not a one of us is the same! LOL
I also have C (moderate) and SA
After spending several years with different doctors and different
medications...I no go to see Dr. Thorpy (top N doctor) in the Bronx. I do not
take any medications because I have found that the side affects are worse
then putting up with the EDS and all the other goodies! I will be using a
CPAP soon though.
For all of you that have AOL....I have a chat on Thursday nights from 9pm to
11pm ET.....if u need a link, please contact me at Ibechristie@...
Ta-Ta for now!
Christie

Ok fellow humans, I'm attempting to post and
sincerely hope I don't screw this up. Monitor, if this is
inappropriate, please delete. I'm a member of numerous disabled

Hi, Just thought I'd let others know, ive just been using Aloe Propolis Cream made by Forever Living Products an American company. Ive been having good results like after about 10 minutes of having it on it kills the redness almost to nothing. Just thought maybe other people would want to try it.

Nick

Hi, Josh,<br
list of questions for us?<br
is doing, ok?<br

HI all,
I am a 48 year old female from Manchester, England. I have had
narcolepsy and catoplexy since I was a teenager although I was only
diagnosed a couple of years ago.I've never met another person with
narcolepsy . I've found it difficult to explain to family and friends
my problem...they seem to think i'm making excuses for being lazy.i'd
love to chat with others who understand.

Michelle,
This rosacea group usually does not discuss diet and food triggers
in controlling rosacea and prefers to discuss other treatments
or methods.

Wow, Josh, lots of great questions. Here is a
list of sites and links that I have found useful since
my involvement with sb's and sci's. I'll send this
in an email also as a Word doc that you can save for
future reference. There's way more here than you can
possible check out in only a couple of days and I'm sure
you'll be getting some responses to specific questions
soon. Hope you have lots of time to spend learning how
to help your sister. Good luck, my friend
!<br
links:<br
target=new
technology<br
target=new
America<br
target=new
of disability and
sexuality<br
href=http://community.mediconsult.com/mc/supportg.nsf/conditionnav/spinal~suppor\
tgroup?opendocument&start=1&count=20
target=new
supportgrou
p?opendocument&start=1&count=20</a
lots of
good Q&A here<br
target=new
online magazine for sci's there's just a ton of
information at this
site<br
target=new
the Miami Project; includes PointIS
(point of care, team-based, information
system)<br
target=new
subsite of the Miami Project; an index of
cure-oriented, sci
research<br
target=new
Project to Cure
Paralysis<br
target=new
spinal cord and head
injuries<br
target=new
club's members
(Phoebe_L2); she has posted extensive links and information
here re sci, its effect on her, her family, her life.
Phoebe has an extensive site and links to many different
things on different pages on her site it will take you
hours to look at everything she has found and
posted.<br
target=new

Nancy,
What's the address for the book "Narcolepsy No Laughing Matter"?
Can't remember <yawn
about a month ago, though I have posted a couple of times. I am a female
PWN(no C), age 44, dxd 3 years ago, tho' suspected N for years. My mom, also
a PWN & C, was dxd in 1980 after quitting smoking and losing the protective
effectof nicotine against C. My mother, bless her, starts laughing as she
gets close to the punch line of a joke, and kept falling down before she
finished....
My particular interest these days is any link between N and ADD as I have
just been formally assessed ADHD (also long suspected).I have appreciated the
posting of many to this list about that, as well as the messages sent to me
personally.
I especially have enjoyed the humor (thanks Nancy and Emo particularly)
because although it is no laughing matter, laughter sure helps smooth the
rough spots.
Blessings to all,
Susan Zencka

Hi All,
I was wondering if eating foods that I am allergic to could be
wreaking havok with my skin... Does anyone out there know if rosacea
flare-ups could be triggered by food intolerences? I would really
appreciate a response. I used to be on allergy shots and am
thinking of going on them again. But this time I will stay on them
for good if my allergies are making my rosacea worse. Thanks.
Michelle

Hey people, first of all I like to thank all
people who sent me an email lately offering their help.
Im really touched by the kind words and constructive
advice Ive received. I started organizing some of the
questions I have, and would appreciate any answer you might
have on any of them:<br
Psychological.<br
wondering if there were some general psychological issues
that can be expected. Ive read quite some life
stories of people with a SCI, and saw that at the end of
day everybody came out with a strong personality and
an incredible will to move on. I havent read much
about the steps that were necessary to achieve such a
mind-set though. I therefore would appreciate any
(personal) story about the psychological issues that
surround a SCI and what the most important events are that
help one through moments of pain.<br
en donts in this context are welcome right now. I
read on some pages e.g. that it can be extremely
annoying if people get over-helpful. Personally i tend to
react to the incident in a sort of combat mode: any
information i give my sister is realistic (no false hopes but
simply the situation as it is right now) and go into
this fighting mentality that basically states that
there isn't a problem that can't be solved. I also try
to get her to see the humor of the situation every
now and then. Anyway, I dont know if this is the
best thing to do, and therefore would appreciate any
experiences you might have in this field as well. In other
words, which attitudes of the people surrounding you
were most helpful to deal with the
circumstances?<br
making some adaptations here and there, almost
everything (living, working, driving, sporting, and going on
holiday) remains possible without help from others. The
following questions arise though:<br
my sister *always* need help? I appreciate the
argument that things depend on rehab, but in her case with
a T11 SCI and a good functioning, strong upper
body, what can ordinarily be expected?<br
understood that after a SCI the most dangerous side effects
are possible pressure soars and bladder infections
[hope this is the correct medical jargon :o)] What can
or should be done to avoid this? Are there any other
side effects I havent heard of yet?<br
lot of appliances and aids for people in a
wheelchair. I was wondering though if there are any
*structured* design approaches available for the house
(kitchen, bathroom, living room, sleeping room and general
accessibility of the house.) and the workplace.<br
gadgets make life easier for people in a wheelchair? I
read something for example (jeez how am going to
explain this properly) about shoe click-ons which are
also used in the cycling sport that remove the
necessity to attach your legs with a band when youre in a
wheelchair. Another example is a gadget I recently saw that
makes it easier to put on your socks. <br
rambling for now.thanks in advance for any information
<br