WP Weblog

Ann--
I've been interested to read your posts, especially the ones that reference your wonderful doctor. Would you mind sharing who this doctor is and where he/she is located?
Your comments yesterday about getting the thyroid under control intrigued me greatly. I have hashimoto's thyroiditis and have never before been told that correcting my thyroid difficulties may help control my rosacea. This is one reason I'm very interested in finding a reliable doctor.
If you'd prefer to e-mail me privately, don't hesitate to do so.
Thanks,
Alice Haddow

Regarding friends: Sayings to become famous
You lie and I'll swear to it.
I accept you, warts and all.
When I'm asleep most of the day, the only sound I'll hear is you cleaning my
house.
and the most significant one of all: When I run out of dexedrine from my
scrip, you'll share yours with me.

http://tinyurl.com/7juz
I hope this helps some of you... it's depressing to me :) but maybe
if we know what to avoid we can help ourselves a little
good luck

Dear Nancy:
Thanks for the thread. A friend is a friend is a friend.
My best,
Sue

If any of you are able to help me with this group
as a moderator, I would appreciate it very much.
It is time consuming to reset bouncing members.
The only other job I can think of would be to

they don't need that much sleep, Dorla! Even you and I at OUR ages, don't need
that much sleep!!! LOL Ray

I have blond hair, fair skin with 'rosy' cheeks and some small veins as well as occassional itchy bumps. - Dr.s have said for years, "You just have sensitive skin". Finally, when the rash was especially bad, a Dr. sent me to a specialist who said I had Rosacea (mild). She suggested spectrogel and metrocream twice a day. It keeps my problems fairly will controlled. Triggers are shampoo, makeup or most topical ointments, sunscreens and the 'local' wines as opposed to wines aged over a long time.

The explanation the specialist gave is that the large pores on my face trap all manner of dust, bacteria, fungus and whatever comes in contact with my face and sets up a mini allergic response. I also have rhumatoid arthritis and wonder if there is a connection?

unique_challenge40160 <unique_challenge40160@...

Hi one and all,
I am still obviously trying to collect many stories from anyone out
there who would be willing to take the time to sit and write their
individual rosacea stories. The larger rosacea group has taken a
HUGE part in this mission, and we would LOVE for anyone here to
participate as well.
It doesn't matter if you have pre rosacea, mild, moderate, severe, or
very severe, as long as we can get as many stories as possible. I
will be handling all the primetime tv shows as I've mentioned in the
past, on the other hand a member of the other group will be handling
the Oprah show, in hopes to have a segment about rosacea, that will
be brought to many peoples attention. Together we figured, that with
all the stories we are hoping to recieve, that TOGETHER WE CAN ALL
MAKE A DIFFERENCE.
I on the other hand am handling all the other primetime shows such as
20/20, 60 minutes, good morning america, etc. Once we've reccieved
enough stories, we will combine all the stories, along with a cover
letter to whomever we are sending the stories to at the time, along
with a picture of doc Nase as the cover,when he was at his absolute
most severe stage, a table of contents, along with the 40 quotes from
doc Nase's book ( of course he has already given permission for us to
do this) his own individual story, then all the stories we are trying
to focus on now.
In your story include how this disease has had an imapact on your
life. Explain how it has affected your self esteem, your social
lives, relationships with spouses, friends, family, boy friends/
girlfriends, jobs, schooling, etc. Also mention about the medications
you have tried with to no avail, the supplements you are trying, the
foods you are unable to eat, exactly what all your triggers are...
just more or less let the public hear from ALL of you sufferers the
impact that this disease obviously has on your everyday lives.
So far to date, we have already collected a total of 82 stories in
total, but still need many many more in order to get the attention
from the media.
I know a lot of you are busy with your lives, jobs, families, etc,
but obviously we all spend a great deal on the internet reading
letters from each other, so why not do something productive that
might bring some attention to others out there.
It's a known fact, that rosacea is obviously swept under the carpet
and we can no longer allow that to happen. We have to let people know
that this disease is very real, it does exist, it's not in our heads
or in our imaginations, and for goodness sake, it's just not a
cosmetic skin disease that can easily be covered up by hiding behind
make up.
I also realize that there will be some of you out there who will
think it's a waste of time to participate, but then again, how do we
know unless we try.
Yes, of course we are about to begin yet another war... that is a
known fact... and your probably thinking, "why would anyone care
about something as silly as a skin condition?" Is that what rosacea
is to you... just a silly skin condition?? Obviously not or you would
not be members of this board looking for help and support, asking
questions and trying to educate yourselves.Why not try to take it one
step further and TRY to let us ALL educate the ones who need
educating the most... the public.
I know this might just be a shot in the dark, but it's worth a try...
after all, who knows what can become of this. We are hoping for a
HUGE turnout and I am wondering why the response from this group has
been so few and far between.
If you can spend as much time reading each and every post on this
message board, do research on the net, educate yourselves, then why
not HELP US to HELP all of you?? I mean after all, you never know
unless you give it a TRY!
SO PLEASE each and everyone of you, take a few minutes out of your
busy day to sit down at your computer and write a story, it doesn't
have to be a long story, only a paragraph if that's only you feel is
necessary, but please take the time to participate in this very
important mission.
It is about time ALL our stories were heard, so let's continue in the
fight together. Therefore, together we can fight the battle and win.
A friend who is determined to make a difference.
Ann
PS You can send your stories to me at:
unique_challenge40160@... or uniquechallenge@...
PPS Don't waste another single minute, write your stories NOW. The
sooner the better.
To unsubscribe from this group, send an email to:

All sound asleep in their beds with their night caps pulled over their eyes..
Dorla

Boy, this club has just really gone to sleep, hasn't it? Where IS everyone?
Angela, how's your dad doing?<br

Hi one and all,
I am still obviously trying to collect many stories from anyone out
there who would be willing to take the time to sit and write their
individual rosacea stories. The larger rosacea group has taken a
HUGE part in this mission, and we would LOVE for anyone here to
participate as well.
It doesn't matter if you have pre rosacea, mild, moderate, severe, or
very severe, as long as we can get as many stories as possible. I
will be handling all the primetime tv shows as I've mentioned in the
past, on the other hand a member of the other group will be handling
the Oprah show, in hopes to have a segment about rosacea, that will
be brought to many peoples attention. Together we figured, that with
all the stories we are hoping to recieve, that TOGETHER WE CAN ALL
MAKE A DIFFERENCE.
I on the other hand am handling all the other primetime shows such as
20/20, 60 minutes, good morning america, etc. Once we've reccieved
enough stories, we will combine all the stories, along with a cover
letter to whomever we are sending the stories to at the time, along
with a picture of doc Nase as the cover,when he was at his absolute
most severe stage, a table of contents, along with the 40 quotes from
doc Nase's book ( of course he has already given permission for us to
do this) his own individual story, then all the stories we are trying
to focus on now.
In your story include how this disease has had an imapact on your
life. Explain how it has affected your self esteem, your social
lives, relationships with spouses, friends, family, boy friends/
girlfriends, jobs, schooling, etc. Also mention about the medications
you have tried with to no avail, the supplements you are trying, the
foods you are unable to eat, exactly what all your triggers are...
just more or less let the public hear from ALL of you sufferers the
impact that this disease obviously has on your everyday lives.
So far to date, we have already collected a total of 82 stories in
total, but still need many many more in order to get the attention
from the media.
I know a lot of you are busy with your lives, jobs, families, etc,
but obviously we all spend a great deal on the internet reading
letters from each other, so why not do something productive that
might bring some attention to others out there.
It's a known fact, that rosacea is obviously swept under the carpet
and we can no longer allow that to happen. We have to let people know
that this disease is very real, it does exist, it's not in our heads
or in our imaginations, and for goodness sake, it's just not a
cosmetic skin disease that can easily be covered up by hiding behind
make up.
I also realize that there will be some of you out there who will
think it's a waste of time to participate, but then again, how do we
know unless we try.
Yes, of course we are about to begin yet another war... that is a
known fact... and your probably thinking, "why would anyone care
about something as silly as a skin condition?" Is that what rosacea
is to you... just a silly skin condition?? Obviously not or you would
not be members of this board looking for help and support, asking
questions and trying to educate yourselves.Why not try to take it one
step further and TRY to let us ALL educate the ones who need
educating the most... the public.
I know this might just be a shot in the dark, but it's worth a try...
after all, who knows what can become of this. We are hoping for a
HUGE turnout and I am wondering why the response from this group has
been so few and far between.
If you can spend as much time reading each and every post on this
message board, do research on the net, educate yourselves, then why
not HELP US to HELP all of you?? I mean after all, you never know
unless you give it a TRY!
SO PLEASE each and everyone of you, take a few minutes out of your
busy day to sit down at your computer and write a story, it doesn't
have to be a long story, only a paragraph if that's only you feel is
necessary, but please take the time to participate in this very
important mission.
It is about time ALL our stories were heard, so let's continue in the
fight together. Therefore, together we can fight the battle and win.
A friend who is determined to make a difference.
Ann
PS You can send your stories to me at:
unique_challenge40160@... or uniquechallenge@...
PPS Don't waste another single minute, write your stories NOW. The
sooner the better.

A very happy Mother's Day to all the mom's out there. Enjoy this day that is
set aside to honor you for all that you do. And if you can, hug each of your
kids. :)<br

Hi Everyone:
I have a friend with narcolepsy whose husband puts her down all the time.
I mean it's incredible. She crunches ice whenever she can and laughs saying
that people who are sexually frustrated crunch ice. When I returned from the
convention, I found the "ice crunching thesis'" being discussed and told her
about the discussion. She was really interested and wanted me to send her
your messages so she could show them to her husband as proof that other
people with narcolepsy also crunch ice; however, I had already deleted
everything. Could someone more articulate than I, give a good recap which
might also put this guy in his place. (Fortunately, she just lets it roll
off - or has for 40 years!).
Thanks.
Sue

Sue,
Same thing happened to me but only with a steriod cream. Made my
whole face really red and raised (Azelex Cream). When I called my
Doc he said to stop right away that it sounded like an alergic
reaction. I would definately stop the meds just in case. He could
always use again if doc says so later. But I wouldn't take any
chances.
KK

HI EVERYONE HOPE ALL IS WELL WITH YOU
ALL..<br
THE HOSPITAL. HE WAS IN REHAB, THEN HE GOT A SHARP
PAIN IN HIS HEAD AND THAT'S ALL SHE WROTE!!<br
ARE DOING MORE TEST ON HIM AGAIN..JUST WAITING FOR
RESULTS...WONT KNOW UNTIL MAYBE SAT..<br
NEXT 5 DAYS GOING TO BE WITH MY HONEY....WE NEED THE
TIME REAL BAD..<br
DON'T KNOW MYSELF...BUT ANYWAY, YES I GUESS WE ALL HAVE
BEEN OUTSIDE LIKE I HAVE...AND LOVING EVERY MINUTE OF
IT!!!!!! WELL TAKE CARE ALL.. GOT TO GO TO BED..I WILL TRY
TO BE ON SOMETIME NEXT WEEK K ?<br

Not much activity here lately; everyone busy?
changing season making everyone want to be outside more? I
know it does for ME!<br
heard anything from you lately... please let us
know.<br

Sue, thanks for your input. My unique problem is t he longer I lay
there...the more frustrated I become and the more awake. There are nights,
when reading will put me out like a light. But lately, no way! I only sleep
for a couple of hours in the morning when I am going through a period like
this. No afternoon naps at all. I make myself keep moving as much as possible
because when I do go through being up all night...if I sleep in the
afternoon, I can forget sleeping at night. Finally, out of pure exhaustion,
I'm sure, I slept last night. But I am looking for the combination of things
that will work for me when this happens again( not sleeping at night) I
appreciate any suggestions. I prefer not to take sleeping pills. Marilyn

Hi Romy,
My name is Stacy, I was diagnosed with
n. this last June. I had a lot of
questions too! and still have more as
time goes on. The thing I have really learned,
through reading and especially this group,
is that narcolepsy comes in many forms and
degrees. There are so many odd symptoms, but
the eds and cataplexy seem to be the most
debilitating (wondering if you have cataplexy,
you did not mention it). I take dexedrine for
the eds. I tried ritalin and provigil and the
slow release dexedrine prior to taking regular
dexedrine. The regular dexedrine helps by far
better with eds with fewer side effects for me.
But as you keep reading posts you will discover,
people respond differently to different meds. It
usually takes trying different ones to find what
works best for you. I have heard people recommend
also to try and keep your sleeping as routine as
possible, and to always try and get adequate amount
of sleep at night. this is laughable to many because
pwn often have great difficulty sleeping at night.
Good luck and welcome to the site. There are many
here who are helpful and very supportive. We all
understand what you are dealing with; and you are
right, others do not (people without n.). Keep us
updated, and keep the questions coming.
Stacy

Beautiful.. It would sure be nice to have pretty scenery to gaze at all day
long.. Dorla

I have problems with it on and off. It is very frustrating to deal with. I
really try to keep my night time routine stable...bedtime, dark room etc.
When I wake up I try to stay in bed. If I start going crazy being awake I
read for a while. I was getting up and going to the computer. I find if I
can stay flat I am more likely to go back to sleep. I also try to keep my
day time naps under 1/2 hour. Hope this helps.
Sue

The club pic is a shot of Pikes Peak taken earlier this month from Lardspur,
where the Texas 7 were caught. My brother just bought a 2nd home here and this
is the view he has...:)<br

Hi ... I was diagnosed a couple of years ago. After reading some accounts of others, don't think my case is very bad ... I seem to be able to control it with twice daily using spectrogel and metrocream. I still have spotty breakouts, but they only stay a day or so and at the most leave a red spot for a few months. My cheeks have a permanent red glow and some small blood vessels ... I'm blond and fair skinned.

I live on the west coast, so we have mild weather: 80degrees F in the summer and 32F in the winter (with a few days extremes). Maybe you should try a gentler climate! Our daffodils are blooming and the grass is green, the birds have returned to nest. The most I do is wear a hat in the summer ... sun protective lotions make my face break out. I no longer sunbath in the summer.

I don't know if that helps. Remember that stress can also play a part, so make sure part of your day includes doing something you love to do!

sophiesaracina <sophie222@...

Hi, I was diagnosed with rosacea about 6 months ago. I am not on
antibiotics, because I chose not to take them. I use a mixture of
essential oils called "Gentle Baby" that is formulated for acne. I
have pretty good luck with it but, the weather in Ohio has been
really cold and I continue to break out. How much effect does the
weather have on rosacea?? I also use MetroCream. I am worried
about the summer approaching because I like to be outdoors. My
biggest question right now is can the cold weather effect my
condition?? What do you do to protect your face from the weather??
To unsubscribe from this group, send an email to:

In a message dated 10/31/00 10:15:07 PM Central Standard Time,
romyrosenbaum@... writes:
Romy:
I'm sorry I can't answer most of your questions, but I wanted to address this
issue. You now have a diagnosis that puts you into the ADA, etc.
accommodations. Talk with the disability liaison at your school -- I strongly
suspect that your total classload can be lowered because of your (currently
uncontrollable) EDS.
I hope you get more answers soon.
Leslie G.

Hi, I was diagnosed with rosacea about 6 months ago. I am not on
antibiotics, because I chose not to take them. I use a mixture of
essential oils called "Gentle Baby" that is formulated for acne. I
have pretty good luck with it but, the weather in Ohio has been
really cold and I continue to break out. How much effect does the
weather have on rosacea?? I also use MetroCream. I am worried
about the summer approaching because I like to be outdoors. My
biggest question right now is can the cold weather effect my
condition?? What do you do to protect your face from the weather??

Hi,
My name is Romy Rosenbaum. I'm a 23 year old college student. I was
diagnosed with RLS about 4 years ago. A few months ago my docs started to
say that maybe I had narcolepsy (in May). I was already put on provigil
last February and Ritalin last April--because I was so so so tired. They
thougt I was tired because I had really bad RLS, but then they finally got
the RLS under control, and I started sleeping a normal amount, but I was
still just as tired. I had one PSG and MSLT in June. It showed that my
night time sleep was ok (no RLS or PLMD), but my MSLT had an average sleep
latency of 2 min. In June I had no REM sleep in the night time or
MSLT--probably because I was on 60mg of restoril, so I had a repeat study a
few weeks ago with out the restoril. I was on neurontin, mirapex and
oxycontin at night, and neurontin in the day for the RLS--otherwise I can't
even sit down. This study showed I had a average sleep latency of 2 min,
and 2 REM onsets in the naps. My doc said I didn't ahve rem at night, but
that was probably because of the meds I take at bedtime. I have
hallucinations, some sleep pasalysis, and automatic behavior. I am tired
all day even with all the meds. I now take 400mg of provigil in the
morning, 200mg in the afternoon, 20 SR Ritalin in the morning and 10mg in
the afternoon. I also take neurontin during the day, and mirapex, oxycontin
and neurontin at night. I was also on ambien,but stopped in for the study,
and since I slept well during the study, he wanted me not to take it, but
sometimes I can't sleep at night.
I have alot of questions. What about sleep hygene, should I wake up at
the same time every day even if i'm sleeping and have time to sleep, should
I get up, or keep sleeping? When should I nap, and when should I take my
meds. I takethe morning ones when I get up, (at 9 or 10) and then I take a
nap at 3 or 4 for 1 or 2 hours, and then I take the 200mg provigil and 10mg
of ritalinwhen I get up.
I am goingt o the doc on friday, at my college, and my doc from home
called today. he said my HLA was negative, but that I was pathanoicly
sleepy, and that I should be on stronger stimulants--like dexedrine, or
adderall or SR methylphenidate. He said he would come on the phone when I
was at the doc here at school.
I feel very frustrated, I dropped my classes to the lowest level they
can be, and still be full time, but it is so hard to do any work. I feel
like people don't understand what I go through,and how much of a struggle
each day is to get through. I feel kind of hopeless, like I don't know what
my life wil be like.
Does any one know if there's a support group in the New York city area,
does any one know a good doctor in the New York City area, would anyone be
willing to talk to me or meet me--I'm in manhatten, I;m a girl. If anyone
can help me or talk to me or give me any advice it would be welcome.
thanks,
Romy

This joyous day is drawing to a close. And I
trust that it was a day of happiness for all concerned.
It sure was for me because I had my mom and all of
my kids with me for the first time in over a year.
It was nice! And Angela, I trust that your family
found this a joyous day too, with the good news on your
dad. Prayers continue for his improvement.<br
bye time.......nite all!<br

Adam,
My understanding is that dietary changes
don't work for everyone because many
do not want to even try this approach.
Brady
On Thursday, March 13, 2003, at 08:57 PM, "Adam"
<filter@...

I"m a strong believer in prayer...could be that
it worked! Whatever the reason, I'm very, very happy
for all of you.<br
very happy Easter! May the Easter Pig bring you lots
of goodies...<br

Well the results came in early this morning on my
dad, Get this!! What ever was there isnt there
anymore!! To much right? So we don't know what was wrong
maybe he had a mild stroke don't know.<br
passed his swallow test and got to eat solid foods
today...Hope he didn't over do it !<br
eating for almost 2 wks that they would start him off
with broths and jello and stuff like that! but noooooo
so I hope he can keep down what he ate. He is
getting out of the hospital and right to a rehab..to
learn how to walk on his own again... Well thats all
for now.<br
happened and what cause this.. Let's hope whatever was
there didn't go somewhere else for now!!<br
all that was praying for my dad..<br
all and have a great Easter and passover..<br
Angela

you guys are too funny. thanks for your
feedback Clynch re long naps. i also
have to drag myself out of bed regardless
if in the am or after a nap. i feel physically
ill when i get up in the morning, every morning.
if i didn't have a daughter to get to school,
i would never make it to work, but i'm like you
as long as i am alive i must work to support
myself and family, there is not a choice.
well, i haven't even tried this ice crunching
thing. i do get parched a lot and so maybe ice
is the answer. maybe i should try ice in the
cold shower in the am to wake my body up (and
my ever groggy mind). by the way i am very
sensitive to hot and cold too, but would rather
be on the hot side (except when sleeping) i tend
to get angry when i'm too hot or cold. cold feet
is the worst. well i am off now to get some ice.
take care,
stacy

Ohhhhhh Adam.

Your so young to have rosacea.:(

Talk about a self -concious age.

Life is not fair.

I am looking up some recipies that maby you could use.

Like you said,once you take away the carbs,sugar,butter and oils

there is not much left to eat.

Im looking for some good ones on the Helleluja diet.

Talk to you soon

MM

Hi group,
I have been getting a lot of attachments lately, FYI, I do not open any of
them. There have been viruses sent, please send messages without
attachments.
Elena

I have an extra bag of Ice if you want to borrow. lol :) Marilyn

Here is my Theory on the ice crunching;
Assumptions:
A: all ice crunchers are NOT Narcoleptics.
B: Therefore ice crunching in and of itself is not the cause of our
defective Autoimmune system destroying our Hypocretin producing cells.
Possibilities:
1: We are deficient in a certain mineral which creates an urge to eat
ice. Trait possibly descended from early man, and other animals which
eat ice to fulfil certain mineral deficiencies.
2: Perhaps it is ice crunching COMBINED with another causal factor
i.e. a migraine headache, which causes Narcolepsy in the first
place.
Conclusion:
AA: Where's my damn bag of ice?

HI:
I WAS ON IT FOR 1 1/2 YRS WITH GOOD RESULTS. NOW I
TAKE A PRESCRIPTION VITAMIN (ZINC) AND IT IS WORKING.
I AM ALSO COMBINING YOUTH LIGHT TREATMENT AND TNS
COMPLEX. BOTH ARE EXPENSIVE BUT I DO SEE RESULTS.
HOW LONG WILL BE THE KEY.

Well all my dad is still in the hospital, They
were suppose to do a MRA but they cant because his BUM
levels are still to high yet meaning his kidney levels
are high,thats because they didnt give him any fluids
until 2 days after he was in the hospital..They were
going to test him yesterday, but still they couldnt.
They opted to go thru the main artery in the groin
area, bypass the heart and go to the brainstem. Well
because he is on bloodthinners this is also very
dangerous. He can bleedout or get another clot or have
another stroke!!<br
Conn. He would be better already!! So we are still
waiting for him to be tested!!!! He's getting up and
moving around very slowly but he over did it yesterday
cause my oldest brother went there so I think he was
showing off alittle..lol I will let you all know what is
happening...Thank you for asking...Say a prayer for him for me
please..He isnt out of the woods just yet...Love to
all.<br

That is funny...I wonder if we are all ice crunchers. My teeth aren't doing
so well from crunching on the ice. I don't carry a cooler but I do keep
bagged ice in my freezer and go through 2 bags a week. lol

Hey, Angel, how is your dad doing? Please update us. Love to all your
family.<br

Debbie,
What is it about eating ice that works so well? I've been an ice cruncher
all my life, to the point that my teeth are all falling out and have
multiple fillings. I wonder if ice crunching is a sign of N?
CV
Hi,
I have been meaning to check my temp with some regularity but have not. I
suspect, however, that I too have a lower than "normal" one. There is a bit
of an odd thing I experience that others may find helpful??? if not,
interesting. I stay awake driving by eating ice. To the extent that, I carry
a small cooler with me in my car at all times. Not an iron deficiency which
can be a reason one craves ice. My dentist does not like the wear and tear
on
my teeth but for me it works incredibly well.
Debbie

I bet you took a long time finding this pic so that it would clash...lol...
Dorla

I don't know much about strokes but I did take
care of a lady for 6 years who had suffered a stroke.
She was in her 70's and they didn't give her much
hope of ever regaining much. But she did..They moved
her into a rest home and that's when her husband came
to me and asked if I'd take care of her. They
usually don't do much to help people regain anything in
those places unless you get them into a specialized
facility. They just take care of their basic needs and
that's it.He thought since my daugher was paralized that
I would be able to help his wife. False
assumption...lol.. I agreed and he moved her home and even though
she never regained much finger use of her left hand
she could use her arm and learned to talk, eat, and
walk. She had a slight limp but otherwise as far as a
full recovery to accomplish all the daily activities
of life.. she achieved that...She regained her
memory and was quite sharp..It has more to do with the
brain repairing it's self or finding a rerouting of the
waves I think..I have heard that repetation also will
help the brain re-route. Now, this has been a while
ago and this info maybe in error for they come out
with new theories all the time..She lived 16 more
years and out lived her husband...Dorla

Hi,
I have been meaning to check my temp with some regularity but have not. I
suspect, however, that I too have a lower than "normal" one. There is a bit
of an odd thing I experience that others may find helpful??? if not,
interesting. I stay awake driving by eating ice. To the extent that, I carry
a small cooler with me in my car at all times. Not an iron deficiency which
can be a reason one craves ice. My dentist does not like the wear and tear on
my teeth but for me it works incredibly well.
Debbie

Jory,
Some of the main triggers I have found in myself are Peanuts and
peanut butter, soda, chocolate, strawberries and seasame seeds. I
am sure I will probably find more but right now those. And some
laundry detergents. I can only use Arm and Hammer detergent since
it's free of dyes. And Pantene shampoo which I loved to use but
found it to be causing some flares.
I was very upset about the seasame seeds I loved to eat seasame
bagels and my favorite salad was a strawberry spinche salad which
had seasame seeds it in it. But I will do whatever it takes and
stop eating whatever it takes to STOP these HORRIBLE flare ups.
One food that really seems to help me is eating steamed brocolli or
even on the grill. I toss in alittle salt and oil and grill. It
tastes great and always seems to help when I flare.
I currently find relief with Elidel cream. It really help with the
redness and bumps but after using it my face is very dry and cracky
so I use vaseline around my nose and mouth and Cetifil moisturizer
on my face. It's working for now.
My worst times are premenstral when hormones are raging. Does anyone
else have problems with red patches and bumps at that time of the
month? Not regular pimples flares and measle like bump with nothing
in them?
KK

Violla,
I took accutane before I had rosacea. So I don't really know how well
it works to treat rosacea. I posted to find out about other people's
experiences with accutane and rosacea. I developed rosacea 3 yrs
after taking a course of accutane.
The acne you describe on your jawline sounds a lot like the stuff I
get. Also, if I stop my medications, I get some swelling in my
cheeks..that only I can see. I get a little puffy on my cheeks, but I
go back on meds. before it gets bad.
The acne I have now is mostly superficial, little tiny bumps. My skin
goes back and forth between being really oily and really dry/flaky.
I never tried resprim. I tried minocycline about 2 yrs ago for a
couple of months. I had broken out with a cyst (thought I had to go
back on accutane for cysts). The Dr. put me on minocycline and my
skin really cleared up. But, it made me very dizzy and I couldn't
take it anymore.
I just started taking doxycycline this week. I think it's working.
Most recently, I have been on tetracycline. I used to not have any
side effects from that, but it just doesn't work anymore. I found
when I was taking 2 tetracyclines a day (500 mg total), my face was
getting very irritated...red, dry, and flaky and hard pimples on my
chin. When I dropped down to 1 tetracycline a day, the irritation
went away, some of the acne went away, but I still didn't look as
good as I wanted. I'm trying doxycycline now and I'm hoping it
doesn't upset my stomach. I'm on Adoxa...which is doxycycline in
tablet form and it's not supposed to upset your stomach. I'm keeping
my fingers crossed. If this doesn't work, I'll consider Accutane.
You can e-mail me if you like. My e-mail is my user name with a

Hi Violla,
You mentioned that 'sleeping' is one of your triggers.
My face was usually very sore and inflamed in the
mornings until I switched laundry detergents and only
wash my sheets and pillow cases in dye free and
frangrance free detergents. It's helped me bunches,
I'm still a funny red color but the dry soreness and
bumps are gone.
Cassie

Well you finally found a pic that doesnt go with
the club theme..good job!! Anyway, I'm not in the
greatest of moods..My DAD had a stroke 2 days ago!<br
say its deep within the brain.<br
brainstem..They are doing more test on him...he can move his
limbs but doesnt have any muscle strength. He cant
swallow well and stand up. So basically they dont know
anything just yet. This sucks cause they live in
Florida...I might go and visit around easter..my mom doesnt
want anyone around just yet..She told us all to stay
home..<br
your mom had one too???? Sorry my brain isnt working
this morning.. Well someone post something about
strokes...As I dont know much about them..Take care and thanks
for being here for me..Love to all..<br
A.K.A. wheelsgrl2

Hi Tricia,

Thank u so much for your reply.

I understand u took accutane in the past. At what stage was your rosacea after that??

Can u please tell me what antibiotics did u take after accutane??

I start to see few acne coming back and this time each pimple is much painful (the acne mostly appears in the jaw area and it was the same area also before accutne). Despite that the face skin looks red and bumpy with little whites ans some white under the skin I dont know how to call it (it has no head). My face is swollen but only I and who knows me well can notice the change. All together I do not recognise myself in the mirror. My skin is extremly dry from head to toe but I do not have flakes (maybe only if I try to put make up than I can notice a bit, any way I gave up on make up and lip stick because the lips are so dry and the lipstick just shows those fine lines and wrinkls).

My worst triggers are sleeping (I become red and swollen after that), eating (especialy from the movement of the mouth its also very uncomfortable for me to smile), excersize, any place hot especially the summer I could not get out of the house until the sun went down.

Can u also discribe your situation after accutane. ?? (did it by any chance cause u facial hair growth).

I guess if u consider taking accutane again even on a low dose than maybe it didnt dry u up too much , because I realy cant see myself even taking one pill of accutane or vitamin A.

U mentioned minocycline worked well in the past. what past?? after or before accutane? how did it help the redness too?

How is the docycline now?/

Im just afraid of the antibiotic drying me up since I already am very dry all around and if it gets me dry I become more red in the face. So u say a low dose will b good?? because I havnt found doctors recomending low dose of antibiotics.

Did u also try resprim (Trimethoprim +sulphamethoxazole) at what dose, how did u react??

I also took antibiotics in the past before accutane and it always helped but its like after accutane I have a complete diffrent body that may react diffrently to medication.

Please if u can answer my questions it might really help me.

(u can also email me privatly if u wish).

Thanks,

Violla

AHA !! Finally, I found a pic that doesn't coordinate....LOL<br
can mess up!!!

Well, you'll have to keep trying and do a better
job of it than this pic. for it matches perfect with
the colors.. lol BTW I'm painting my kitchen and I
need color coordinates there was well...Only had white
paint here and hubby wouldn't buy any other because he
said I should not paint and even have new paint in the
house because of my COPD. Ssooooo.... 1/2 of my kitchen
is white already and he had a terrible look on his
face when he came home but didn't say anything. And
I'm happy (at least 1/2 happy)..And that is all that
matters in life. Could not bear those ucky walls
anymore..Dorla

This is to the person who is considering pulse dye. First off my
friend, if you only have superficial veins will the pulse dye be
affected... you must first be evulated by a well trained doctor and
he/she does not have to be a derm either... If they diagnose you with
have more deeper vessels, then IPL and other lasers will be much for
affective if you find the right doctor... I am SO lucky I found the
most incredible doctor at long last.
Ann

Nancy,
These would all seem to be somewhat common with N, though by no means
universal. I have always had low blood pressure and body temperature. This
combined with the EDS causes many doctors to misdiagnose us as hypothyroidal
(low thyroid). This diagnosis is usually made based on symptoms and not on
the blood work, which is usually normal. My Mom remembers well that they put
me on Synthroid even though the blood tests showed normal.
I also cannot stand excessive heat (my wife hates it because I can't even
sit in the Jacuzzi for more than 5 minutes or so, and even then I can't
submerge above my waist without feeling faint).
The idea of waking up craving sugar (and just craving sugar in general)
leads many doctors to misdiagnose us as hypoglycemic (low blood sugar, the
opposite of diabetes), another one that I got tagged with.
I don't know how many of us suffer from these symptoms, but my doctor says
they're present in his N patients in about 60% of the cases.
Clynch
Hello Michelle,
It seems that many people with narcolepsy have a lower than normal body
temperature. Also I've seen surveys and other bits of information that
indicates people with narcolepsy tend to have lower blood pressure. I have
a lower body temp and also low blood pressure (compared to "normal"). I
also work best in a cooler environment and cannot tolerate much heat. On
the other hand, when my feet are cold, I'm miserable and can't sleep. We
are just odd ducks--or perhaps I should say bears. I don't know of any
other animal which store up fat, hibernates, and wakes up hungry. LOL!
Sound familiar?
Nancy Valencia

In a message dated 10/30/00 8:19:28 PM Central Standard Time,
nanzzz@... writes:
My son was first diagnosed with ADHD in 2nd grade -- after years of my
denying that he was more uncontrollable than most boys. (He learned how to
literally climb the walls when he was 3 years old...) I really have no doubt
that his ADHD is correctly diagnosed ... but I'm also now aware that he may
*also* get narcolepsy. He's always slept VERY soundly. I was able to force
sleepwalking and sleeptalking in him when I tried to wake him to get him to
use the restroom ("you can lead a horse to water...") I finally learned that
I *had* to catch him before he fell asleep or there was nothing I could do to
prevent wet sheets. He was on ritalin for years; we switched to adderall
about 2 years ago. He is a small kid and we've got a real problem with his
not having any appetite when he's on his meds. The meds work wonders -- he
has created quite a few "ritalin converts" when people see what an amazing
difference they make in him. Also, I doubt he's started narcolepsy yet as he
never talks about having dreams, and he's been voluntarily getting up at 6 am
to do strength training (he's in gymnastics). I will keep my eyes open though!
I live in central TX, and there is no support group in my city (although my
doc welcomes me to start one up -- some year I might, but simply being sure
there is food for my family to eat is a great struggle for now).
My husband got me to realize that I had never told my son that the pregnancy
was making my symptoms worse and that I have reason to believe I might be
feeling much better in a few weeks. So I told my son -- he is disbelieving,
but it is a hope I have to hold on to, maybe it will help my son some too.
-- Leslie

For all those out there who are having problems with facial rosacea
as well as the ocular component, it is almost a MUST to have your
thyroid checked. There have been some studies done according to my
doctor that seems to be the two almost always go hand in hand. I also
happent to know ALOT of others who have this problem who have
rosacea too. You will be amazed at how much getting your thyroid
checked and once it stablizes, how much of a differnce it can make
for your rosacea and also the ocular component. Obviously the righ
dosage of medication needs to be administered first before you begin
to see a siginificant change in your symptoms... it can take a while
to find the proper doseage for each individual. However, to high or
to low a dose can cause your problems to begin again, so make sure if
you do decide to have your thryoid checked and discover it to be
problmatic, to have it monitored on a regular basis...
Ann

Well, I keep trying to post a picture that clashes with the club colors, but
alas, I keep failing...lol ; I really want to show you, Dorla, that I don't
coordinate very well. :)<br

Hello Leslie
You have narcolepsy, you've stated that your mother slept too much and now your
son is having difficulty in school. It sounds to me as though your son may be
one of misdiagnosed youngsters who have narcolepsy and not ADHD. Consult your
doc as soon as possible about scheduling a sleep study for your son. Familial
clusters of narcolepsy are common. At 12, he is the right age for onset. Is he
taking meds for ADHD? If so, what? Has it helped? If he has narcolepsy, all
the counseling in the world will not allieviate his problem. Meanwhile, locate
a
narcolepsy support group and take your son, daughter and hubby with you. Family
members are always welcome at support groups because our narcolepsy affects
their lives too. You, too, need the support group. Let me know your approximate
location and I'll give you contact information about the nearest support group.
You may contact me directly if you wish.
Nancy Valencia
<snip

I would like to hear more diet suggestions from folks
who've learned to avoid some of their trigger foods.
Exactly what are the foods containing histamine that I
should avoid?
I would also like to hear how much a typical IPL
session for facial redness costs from someone who has
had IPL. What is the range of price for a session?
Thank you,
Jory

Hello Michelle,
It seems that many people with narcolepsy have a lower than normal body
temperature. Also I've seen surveys and other bits of information that
indicates people with narcolepsy tend to have lower blood pressure. I have
a lower body temp and also low blood pressure (compared to "normal"). I
also work best in a cooler environment and cannot tolerate much heat. On
the other hand, when my feet are cold, I'm miserable and can't sleep. We
are just odd ducks--or perhaps I should say bears. I don't know of any
other animal which store up fat, hibernates, and wakes up hungry. LOL!
Sound familiar?
Nancy Valencia

LOL

Im sorry Adam.

You had me on the FLOOR with your description of aloe vera,s bad taste!

ROFL.

If it works I,ll suck it down you said!.

Yes,it IS bad but believe it or not it gets EASIER with every gulp! LOL

Give it a try!.

Take a deep breath,brace yourself and start guzzling!!!!

Have a chaser ready *immediately*!!

A little sprite will not hurt.

If thats what you like to drink then go for the sprite! LOL

Good luck!

MM

Hi Clynch....glad to see that another person is awake lol. Is there any
chance that you could get a referrel from your primary care doc by calling
and explaining to his nurse what is going on? I'm a great believer in trying
to find ways around "the so-called way" to do things.
What PWON don't understand is that after having EDS for so long...there
comes a time when one more day feels like it will be the straw that broke the
camels back. We want to be awake and to participate in life. NOW!!
Anyway, keep posting and complain all you want. You are right...we do
understand. And that is what we are about..helping each other. Take care
now.:) Marilyn

PCPs don't know anything about Rosacea. When I went to my PCP and
told him that rosacea was bothering my eyes, he said that he didn't
know much about rosacea and he couldn't see anything wrong with my
eyes. He told me it was allergies and there was nothing he could do
for me. I think he thought I was making the thing up.
I called my derm. and he knew right away that I have ocular rosacea.
He helped me get it under control with antibiotics. If I listenned to
my PCP, I just would have suffered with it.

Hey Andy,
I was wondering the same thing...where is everyone?? I opened my mailbox
and was surprised to see just your letter from the group.
I'm glad you posted...at least we know that the two of us still have meds
huh? Hey everyone...how are you? Lets all keep in touch even if we just
say...having a great., or not so great day. I have my days and nights mixed
up again. I just hate it when that happens. I have a really bad infection and
I'm on IV Vancomycin at home so that tells you how I am right now. But, I
will at least post when I am up at night if the rest of you will. How about
it?
Take care everyone. Thanks for posting Andy. Stay in touch. Marilyn

Violla,
I don't have any advice, only sympathy. Antibiotics aren't working
for me very well right now. A high dose makes my rosacea worse (more
redness and flaky patches). If I stop the antibiotic, I get lots of
acne.
My middle ground is one dose of antibiotic per day. Right now I'm
trying doxycycline. I've tried them all. Minocycline worked well for
me in the past, but I had to stop it because it makes me dizzy. It
really knocked my acne out...so if you can tolerate it, it might be
good for you.
My topical medication right now is Rosula. It's a new sulfur drug by
Bradley Pharmaceuticals. It has eliminated my flaky patches, but it's
not as good as azelaic acid for the redness. I use Rosula at night
and I'm hoping to introduce Finacea (new azelaic acid formulation)
for the morning. I don't know if that will irritate my skin or not.
If I do too much, my skin gets irritated. If I don't do anything, it
gets bad. It's a very frustrating balancing act.
Plus, I have to avoid the sun like a plague. I'm dreading the summer
months. I wish they would find a cure for this disease.

Shoot. I've had a kink in my plans. It turns out the sleep doctor I have
picked isn't covered by my insurance unless I have a referral from my
primary care physician. Which means that I'll have to pay for the
appointments I already had with him, in addition to which I can't even get
into my primary for a physical and referral until the 19th of December.
This means I lost my sleep lab appointment and now I'm looking at March or
April before I get into the sleep lab and can have some hope of treatment
for the EDS, etc.
It's a sort of catch-22 in which the doctor can prescribe meds short-term
without the MSLT, but long-term only after the MSLT is done. However, if he
prescribes before I go to the sleep lab the meds may affect the MSLT and so
he doesn't want to. So, I just grin and bear it until after the MSLT.
Sorry to dump on you guys, but I just had to complain to someone who
understands! My wife says, "Well, you've lived with it all these years, you
should be able to go another 6 months!".
The only thing I can think of which would make this whole thing worse would
be if we had some sort of nationalized health care plan like Canada does!
Thanks for being there!
Clynch

Where is Everybody?
I was hoping for some St. Louis highlights.
Is everyone sans medicine? I'm still takin mine, and hoping to hear
from you all.
-Andy

When I'm home my hubby will cook a meal or make a
special dish or dessert and grab the vacumn or wash the
clothes. Even folds and puts them away. But when I went to
Ohio for the summer when I came home it looked like
the worst nightmare from a batcholer home you can
imagine. I really don't know what happened but I was
assured that he sure didn't enterain any women while I
was gone or they would have a least cleared a path to
walk through.. lol Doral

Dear Andy and Stacey,
You are very welcome, for sharing my story about Shelby. I have been so
worried. I heard from my mom this morning, that SHelby was up and moving.
She went out for a pee, and is learning to move herself around on only 3
legs. If this is the most of her injuries, then we are very lucky. She has
trouble getting up and down the stairs, but she will learn that, too, in due
time. I am sure of it. Iti s rare, that Shelby would go without sleeping in
mine or my mothers bed, if she had the chance. Animals love us
unconditionally, which is one of the things that I love aboutthem. Me and my
dogs, sleep a lot. So, we're a pair! :o)
Stacy, I will have to check out tha tbook you recommended! It might help in
teaching my sisters 5 year old about such things. Thanks! :o)
Love,
Guinny
Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/
}"{ Budderfligurl }"{

I said not to suggest it because I've tried all of that stuff. I got
very sick on herbals. And, I've already changed my diet. I don't eat
or drink the things that are triggers for me.

I like homey...and junky...lol<br

Happy Birthday Walker.. Dorla

In a message dated 10/26/00 8:12:37 PM Central Daylight Time, lrobson@...
writes:
<< I've often commented that my cat is the one family member who seems
downright
happy with my new disability.
recently when trying to describe N to people, i just said "i sleep like a cat
-- short sleep cyles round the clock..."
i love my cats(3), and the dog is cute, but i'd rather he slept not in my
room (i'm allergic...)
Peace,
Susan Z.

I've often commented that my cat is the one family member who seems downright
happy with my new disability. I am her favorite nap pillow, and now I sleep
nearly as often as she does -- during the day, no less. I do wish she would
consider waking me from bad dreams, but she does show concern when I'm not
acting well.
Thinking of acceptance, I could use some advice (and encouragement) on
dealing with my 12 year old son, who is not dealing well with me. Whenever he
is annoyed or upset, he will start accusing me of being too lazy to try to
not nap ... it's all in my head and I could control it if I would just try
... all the way to being an unloving and lousy mom because if he signed up
for basketball I might have to miss some games (8 am Saturday!!??). He has a
psychologist whom he is now refusing to go to, his grades dropped
dramatically over the past 6 weeks (from an A to an F in science) ... When I
was growing up I knew my mom slept too much, but she was always like that.
Until 2 years ago I was a super-mom dynamo. When I got pregnant 8 weeks ago I
went from slow to molasses. He's got a disability (severe ADHD), his sister
has a permanent disability (spina bifida) ... but he doesn't want to believe
that I could have real problems too.
Well, I at least had to gripe. I know that I've got to get him into some
counseling -- maybe the school can make a dent.
Leslie G.

Hi Adam

One more thing,,,,,.

Although I believe Accutane to be dangerous with so many possible

side effects it *has* helped many people also.

If you are at wits end and nothing has worked for you then try it!.

It is very successful in the acne /pastule part of this problem.

Rosacea if left uncontrolled also has very damaging side effects.

Let me know how the appointment goes!.

Please mention to the doctor that you dont want a HIGH does of accutane.

I would.

I hope it works for you.

Maby this will be your answer!!!!!!

It would be great if this works for you,THEN after the accutane you can do the diet thing!

I pray and hope that this is YOUR answer!

My fingers are crossed!!!!!!!

MM

Hey,

Just a note, to all of you who have been following the progress of Shelby, my dog that was hit by a car. She's doing much better. She's at home with us for the evening, but goes back to the vet tomorrow morning for some more monitoring. The vet felt she would feel better if she were home with us for the night. There is no one in the office throughout the evening, and they felt she would do better if we took her home.

She seems to be okay. She's very tired, but, they have taken the IV out of her (just left in the needle incase she needs more antibiotics later). Asleep right now, she looks very peacefull. But, you can sometimes see in her face, that she is very sick still. It is sad. It's like you can see the sadness/depression in her face. I wish I coudl make it feel better in her, like I can help some other people. Sometimes, it makes me feel so helpless!

Unfortunatly, Shelby seems to have some left side paralysis, in her front leg. So, although she can stand up, she will fall over when she tries to move. What a sorry site that is to see sometimes. :o( Thankfully, she seems to be doing well in all other areas. And, it is very possible for Shelby to regain most of her mobility, even if she can't use that leg. So, with some time and more love, she will be just fine!

Thanks for all your love and support. We are pushing on through this and Shelby is coming around. Time and love is all that she needs right now. THANKS FOR ALL YOUR PRAYERS!!

Love and Huggelz,

Guinny

Guinevere Aislyn Aurora

Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/

}"{ Budderfligurl }"{

actually my g/f bought me Aloe Vera Juice from HSU & Co. It says 10:1 concentrate (1oz = 10 oz regular aloe vera juice)

its been cold processed, and the ingredients are aloe vera gel (10:1 concentrate from the coicest part of the whole leaf aloe), Erythorbic acid, lactic acid, potassium sorbate, sodium benzoate. Does this qualify as what you mentioned? I know nothing about aloe vera juice. It says take just one teaspoon 3x daily.

You're right about the taste. This is the most rancid thing I have ever tasted in my life :) I gave it up after a day because I couldn't stand the taste. if it works I'll suck it down. the strong taste actually made my face scrunch, or pucker, or whatever bad tasting food does, and that actually caused a bit of a flare so I stopped :) Can you mix it with sprite or something?

I'm looking forward to your E-mail about juicing and recipes. I'm always looking for new healthy foods to eat. I've always been skinny but I come from a family that does not exactly eat healthy. My 21st b-day is coming up in a few months I'm thinking about asking for a recipe book or something :)

Thanks

Adam

If I'm not mistaken, today is Walker's birthday and I want to take a minute to
say I hope it is one filled with lots of joy and happiness. My best to
you!!<br

Sorry Adam

I didnt see the lastpart of your e-mail.

You did read Dr.Nase,s book.

Yes ,he did use laser therapy to help.

He did not do it through diet alone.

I will e-mail you tommorrow about juicing and recipies.

MM

Dear Guinny,
I just got your messages about Shelby, I will
pray for her recovery, it is difficult to see
animals hurt for me I guess because we cannot
talk to them or comfort them in ways we do
children (people). Good luck! This may sound
silly, but if you are a dog lover you should get
the children's book "Dog Heaven", just an idea.
It might make you smile.
take care,
Stacy

Mary, Ashleigh, and all those who responded to me re: Shelby.
I just wanted to send along some good news. Shelby made it through the
night!!! SHe is doing well. The first 12 hours were the worst, and she's
gotten through them! I called an hour after her accident, the vet told me
they felt they were going to loose her. They prepared us for the worst, but
now she is pulling through!!!!!!!!! She is progressing, and with more
prayers, she will get through this with healable injuries!! :o) Thank you ALL
for all your prayers and warm thoughts. Miracles do happen!!
When we went to pick her up early this morning, from the overnight vet
emergency, Shelby's head was up, and her tail was wagging even more. She
looked like the SHelby that we know and love!!! SHe knew who we all were, and
she looked so happy!! The vet even told us she had stood up, with some help,
over the course of the night. X-Rays have shown a lot of bruising in her
abdomen and around her lungs, but otherwise she has few crushing injuries. The
major problem right now, is her front left paw. She has no nerve/pain
sensation there, and they don't know if it will improve or change. The only
other problem, is that she might have had some head injuries, as her pupils
were unresponsive for much of yesterday and the early evening. Otherwise,
she's alert and looking better! Please, keep praying for her speedy recovery,
and Shelby will soon be back into our lives!!
If any of you are interested in seeing what my baby SHelby looks like, I think
I have some pictures that I can upload, or that i have saved. She is our light
and one of hte sweetest puppies ever!!! :o)
Thanks everyone!!!!!!
Love and Happiness and Doggie Angels!
Guinny
:o)))))
Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/
}"{ Budderfligurl }"{

I was thinking, after reading about guinny and her dog, that my dogs
never have gotten mad at me for wanting to sleep. They always are
right there waiting whenever I need to catch a nap. They don't look
away when you fall can't move your muscles, and they always seem to
know when I neeed them to wake me up from a frightening dream.
So I wanted to thank Guinny for sticking with her hurt dog and paying
the bills it takes to keep her little friend around.
-Andy

Hi Adam!

I have put your e-mail in my address book.

I will e-mail you privately.

Im so sorry that you have such a severe case of rosacea.

The statistics seem to be accurate.

Rosacea gets much worse in men.

I feel sorry for the guys because they cant wear make up

like we do.

A little foundation can hide a temporary break out!.

And the money that you have saved to try to cure it!.

Oh my.

My heart goes out to you.

It sounds like there is not much that you can eat even moderately.

You have so many *triggers*

Have you read Dr.Nase,s book?

I have not.I only read all about it on line but it looks like worthwhile

reading.

He had extreme rosacea.

He has it under total control.

So,Adam keep your chin up.

There are so many TRUE life stories of rosaceans beating this thing.

We just have to find what works for YOU!.

Like I said I strongly believe in diet to control it but you are having

a very *tricky* time of it because everything sets you off.

One thing comes to mind,,,Have you tried 100% pure non-diluted

certified organic aloe vera juice?

People who take it say they see results in three days!.

Aloe is a wonderful *anti-inflammatory*.

Someone here said it really took the red out of his face after

only three days.

You have to drink a lot.

It tastes awful but it works for many!.

It worked for me too!

Although I have mild rosacea as a female there are certain days

of the month that sets it off slightly due to hormones.

Thats when I take pure aloe juice.

It works!

Send me a private e-mail if you like.

We will stay in touch.

There is some way for *you* we just have to find it!

Hang in there.

Bye for now

MM

Mary, Ashleigh, and all those who responded to me re: Shelby.

I just wanted to send along some good news. Shelby made it through the night!!! SHe is doing well. The first 12 hours were the worst, and she's gotten through them! I called an hour after her accident, the vet told me they felt they were going to loose her. They prepared us for the worst, but now she is pulling through!!!!!!!!! She is progressing, and with more prayers, she will get through this with healable injuries!! :o) Thank you ALL for all your prayers and warm thoughts. Miracles do happen!!

When we went to pick her up early this morning, from the overnight vet emergency, Shelby's head was up, and her tail was wagging even more. She looked like the SHelby that we know and love!!! SHe knew who we all were, and she looked so happy!! The vet even told us she had stood up, with some help, over the course of the night. X-Rays have shown a lot of bruising in her abdomen and around her lungs, but otherwise she has few crushing injuries. The major problem right now, is her front left paw. She has no nerve/pain sensation there, and they don't know if it will improve or change. The only other problem, is that she might have had some head injuries, as her pupils were unresponsive for much of yesterday and the early evening. Otherwise, she's alert and looking better! Please, keep praying for her speedy recovery, and Shelby will soon be back into our lives!!

If any of you are interested in seeing what my baby SHelby looks like, I think I have some pictures that I can upload, or that i have saved. She is our light and one of hte sweetest puppies ever!!! :o)

Thanks everyone!!!!!!

Love and Happiness and Doggie Angels!

Guinny

:o)))))

Guinevere Aislyn Aurora

Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/

}"{ Budderfligurl }"{

Hi. I'm a recent lurker on this list. My 11 yo daughter has been
having frequent episodes where she looses muscle tone. SOmetimes
only her head will drop & she will immediately jerk her head up &
ask "what happened?" Other times she crumples to the floor & appears
to be out for several minutes.
Several people (including a physician) have seen her & remark that
she looks like she has narcolepsy. She is very difficult to wake up
in the morning, though she has come up with a routine of alarms going
off at half hour intervals, plus my coming in 2 or 3 times turning
the lights on, pretty much yelling at her & shaking her. Her
concentration, focus & school performance haven't been up to her
previous level in the past couple of months. We have ruled out
seizures & heart problems. She has recently started taking low doses
of zoloft & adderal which resulted a real reduction in episodes (from
20 to 150 a day to about 15-20 a week). Our next step is a sleep
study & to see if she can be diagnosed with narcolepsy or if this
just continues in a long line of weird symptoms that don't neatly fit
any diagnosis.
We just had a consult with a pediatric sleep specialist. He wasn't
convinced that it sounds like narcolepsy, but did recommend a sleep
study. When I asked him how many cases of narcolepsy he has seen, he
said half a dozen. If narcolepsy can be more tricky to diagnose in
children, is this enough experience? Do any of you know any
pediatric narcolepsy experts on the East coast? Any other
suggestions? Thanks, Sue

You and Shelby are in my prayers.
Nancy Valencia

hey Jamara,

Thanks for the reply. I would say I have very severe Rosacea. It includes redness, flushing, swelling, burning, and now lots of papules and about 100 little red dots that are a bit smaller than papules that I don't know what they are (irritated pores?)

i've tried the medicinal route (antibiotics, noritate) No real help. I actually already tried laser therapy (7 photoderm treatments) No help there. I'm currently following brady's Rosacea diet (no sugar/very reduced carbs) except to be fair I am cheating like once a day. I just can't find enough foods to eat. Because my skin also flares to any type of butter or oil or fatty foods/meats. when you remove fatty foods and carbs that only leaves so much left to eat. Any suggestions would be greatly appreciated.

What sort of B Vitamins do you take? When I Tried a B-complex vitamin the Niacin in it turned me Bright red. Even most forms of Niacinimide flush me too :(

Also, what did you mean earlier when you talked about juicing carrots? How do you do that? I understand making orange juice, but how do you do that with a carrot?

My typical diet consists of the following foods:

Salad (with just a little bit of ranch dressing w/ 1gram of sugar), blueberries, broccoli, chicken (usually marinated w/honey mustard sauce), eggs (scrambled and hard boiled), granola bars (This is usually how I cheat), Fruit Flavored Yogurts, strawberries, bananas, and the occasional pasta.

I know its not the perfect diet but I haven't eaten pizza, subs, or mozzerela sticks in over three months!! :(

I am willing to try anything to get rid of this condition as its literally ruined my life. I have saved up almost $8000 in the past year that i'm setting aside just to use it to try to cure my Rosacea, but my only concern is wasting $$ on something that doesn't work. I have an appointment on March 18th to start trying Accutane.

If you would be interested in talking further or comparing notes please feel free to post on the list or if you'd rather my E-mail address is Filter@...

I look forward to hearing from you

Adam

P.S. I don't think Dr. nase cured his Rosacea w/dietary changes. I believe he used Photoderm, Accutane, and ETS surgery. but I do know some people have had success with dietary changes.. just not me :( After taking virtually every suggestion in Dr. nase's book, and altering my diet with no improvement maybe I'm just beyond hope.. who knows.

Hi Adam.

Ignore my last *blank* e-mail.I hit send by accident.lol

Adam it can take up to *six months* to see results!.

Depending on how *serious* your rosacea is.

Do you have serious rosacea?

Is your skin dry?oily?.

Do you have postules and acne or are you just red?

Look at Dr.Nase!

He had extreme rosacea!

He beat it!

Have you seen his before and after pictures?

Wow!.

This is *encouraging*.

And there are so many wonderful testimonials from people that got control

of their rosacea through diet.

Now,,,,,If you are really bad have you considered laser therapy?.

I would suggest laser therapy and THEN get on a real *anti* rosacea* diet.

But this is expensive.

I dont know if you can afford it.

If you cant right now,I would try hard to find a way as someone else

here said once,***Rosacea is costly in so many other ways***

How true!

There is no CURE for rosacea but you can control and even reverse the symptoms.

I do not kid myself.

I am not in denial.

I know that if I went off of my healthy diet with my B vitamins,aloe vera juice,herbs,etc,,that in a couple of months my *symptoms* would probably return,

I am NOT cured!

This chronic condition really sucks!.

May I ask what kind of diet you have been following?

Let me know.

I will then compare it to mine.

Maby I can suggest something?.

if I can help someone I gladly will.

You are open to trying.

Let em know

Thanks Adam

MM

Hey all,
I know I have been away and have not contributed much. I need your help right now, I hope you understand.
My dog Shelby (not my new puppy), is sick. She was hit by a car today. She is holding on. She nearly died, but she pulled through and is stable, but it is rough going. She is the light of our lives. If she just makes it through the night, for the next 24 hours, she has a fighting chance. Could you please pray for her? It would mean the world to me. Thank you sincerely.
Love,
Guinny

Guinevere Aislyn Aurora

Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/

}"{ Budderfligurl }"{

Crystal,
I am not on GHB, myself, but I can tell you about my
fiance's experience. He has been taking GHB for about
20 years now. He still experiences the HH, but I know
that he doesn't have SP. I can't say that he has
never had it, because I have never asked him that
question. But, for at least the last 2 years, he has
not had SP. He also still has cataplexy, but he never
falls down. His C attacks are very small and very
short-lived. He usually just tenses up or can't walk,
but quickly regains control. The C has been worse
since the doctors switched him over from GHB to Xyrem.
But still, it is very manageable. The GHB, and now
Xyrem has afforded him a pretty "normal" life. His C
attacks used to send him to the ground about 15 times
per day. Now, he has no more than 5 small C attacks
per day. He has also found that if he can breath real
well while he's sleeping (he usually cracks a window
open and takes Drixoral to accomplish this) the C
occurs much less.
Also, my fiance's mom says that his mood increased
tremendously after on the GHB. Of course, if you're
getting better sleep, I would think that would be
expected.
He takes 2 doses of Xyrem per night. So, he sleeps
for about 3-4 hours, gets up and takes the second
does, and then sleeps for another 3-4 hours. Maybe
you already know this, but I just thought I'd tell you
about it. If you would like to talk directly to him
about it, I can probably give you his email address.
Michelle

=====
For each petal on the shamrock
This brings a wish your way
Good health, good luck, and happiness
For today and every day.

N-People,
You don't have to listen to your doctor all the time. Consider
getting a second opinion from major researchers and doctors from all
of the great sleep centers. ie. Stanford, UofC Ill, U of Michigan,
etc..., Just email them and ask them what they think, not only can
you see if your doctor is as up to date as the leading physicians,
but you may also get hooked into one of the studies any of these
institutions are running. ( thus helping in a cure.)
-Andy

My face is rather itchy and my Derm has prescribed a hydrocortisone
cream I would prefer not to use this cream since I have been told
cortisone is not good for rosacea...does anyone have any
recommendations in order to alleviate this without having to use
cortisone? thanks
Lanisa

no, my low body temp isn't caused by my meds. i hve only been on meds for 6
months. i was dxed 6 months ago also, so I had never had anything before. My
body temp has always been low, even as a baby (or so I am told!!!). Good
thought though!!!!!
my doc is trying to find a way to get me on GHB. does anyone have any
comments on how they like it, or how they are doing on it, makes them feel,
etc. i will have t drive 4 hours to get the meds, and i am not crazy about
that, but something needs to be done!!!! i have been having "insomnia" (can't
initially fall asleep b/c of fear of hh/sp and nightmares while sleeping but
once i am asleep, i am OUT, and have a VERY hard time waking and going
through an entire day (i didn't go to work today b/c i only slept 2 hours
last night and 3 the night before!)
crystal

That's a beautiful picture and yes it matches perfectly.. I should hire you to
do my interior decorating. lol Dorla

I have a thought on this, and I hope I don't make anyone mad with
this theory. Is this low temperature that some of you are
experiencing possibly a result of the meds you are taking? I spoke
with my fiance', Jeremy, about this and he said that he has never had
this problem in the 20 years that he has had narcolepsy. However, he
has been on GHB this whole time. I just wonder if that is why there
is a difference???
Michelle

Welcome to Spring, everyone!<br
of you in the midwest and east are glad it's finally here!<br
week!<br

I seem to remain cold all the time. I never
check my temp. as I am rarely sick. But
I don't remember having the sweating thing
going on, just always cold. I freeze at
work and other people burn up in my house,
I keep it warm. I too have noticed the
out of breath thing, especially going up
stairs. It makes me feel so out of shape.
I have always had difficulty exercising on
a regular basis because of fatigue, so now
that I have meds I am forcing myself to do
so. It is much easier than before meds. It
seems weird that all this is related to N.
I still am trying to figure it out.
Stacy

Hey, Angela, how's THIS pic?? Kinda blends nicely with the club colors, doesn't
it?<br
guys coming back to CO?<br

This is interesting to me because I have been searching for juicing recipes besides carrot that might be suited to a rosacea diet. Do you happen to know of any??

thanks

OKD [INLINE]

marilynmonroe35ca <Jamara@...

Many people want a band-aid approach to
their rosacea.
A quick fix to this DISFIGURING condition.
I got news for you.
If you are not *willing* to accept dietary
changes you will NEVER keep your rosacea
under control.
It will continue to *progress*.
You are merely masking symptoms for
some time.
They WILL come back.
I dont understand why when faced with something
so horrible as DISFIGURING rosacea that more
people are not willing to try ANYTHING
to get rid of it!
Adspecially when the answer is so *inexpensive*
*non-invasive*and right in your own kitchen!. :O
Dont be so lazy and go juice some carrots!
That would be a good start!
It only cost *pennies*.
DISFIGURING DISFIGURING HORRIBLE ROSACEA.
MM
To unsubscribe from this group, send an email to:

Nancy tell me more regarding bright light therapy.
jeeper-

Many people want a band-aid approach to
their rosacea.
A quick fix to this DISFIGURING condition.
I got news for you.
If you are not *willing* to accept dietary
changes you will NEVER keep your rosacea
under control.
It will continue to *progress*.
You are merely masking symptoms for
some time.
They WILL come back.
I dont understand why when faced with something
so horrible as DISFIGURING rosacea that more
people are not willing to try ANYTHING
to get rid of it!
Adspecially when the answer is so *inexpensive*
*non-invasive*and right in your own kitchen!. :O
Dont be so lazy and go juice some carrots!
That would be a good start!
It only cost *pennies*.
DISFIGURING DISFIGURING HORRIBLE ROSACEA.
MM

I asked if anyone wants to chat, and now I have
to beg off..I may not be home over the weekend; if
anyone feels like chatting though, come on in; if I'm
home, I'll be here sometime Sat afternoon.<br

I forgot to mention that I was put on synthroid three years ago for being
hypothryoid. I was tested recently and the medication is still doing it's
job. I have increased it once in three years. My normal temp is never over 97
to 97.4. It has to be the N because the hypothryrodism is under control.
Marilyn

Hope you have the luck of the Irish. Snowing here again... Spring is never going
to come...But I'm sure it will melt right off.. Dorla

I'm not Irish...But I am on St Patty's Day! Kiss me !!!!!! lol. Anyhow, For
those who are, Have a great Day..! angela.

I don't know. I was diagnosed as a teen with hypothyroid (low thyroid) and
placed on synthroid. Not because of a blood test, which was normal, but
because of my symptoms. Sleepy, groggy, cold all the time. My temperature
(normal) has always been right around 98.1
CV