| From | Message |
Jill
IP: 68.101.166.106
12/01/2005
18:05:00 |
 Subject: More Oprah thoughts
Message:
Wow, it's amazing how we all seem to be on the same
wavelength. Before I even read the posts today about sending
NGF to Oprah, I had been thinking the same thing. But beyond
that, I was thinking that there is a bigger story here - not just
about a product, but a community of friends that all started with
the use of the product. Perhaps that is the story that would truly
touch Oprah. At first blush, her screeners might think that it's
superficial, that a group of women were just interested in
growing their nails. But at the heart of our circle are human
interest stories, of strangers brought together by NGF and
cyberspace, to support each other - from encouraging one
another during health scares (their own or one of their parents),
funding a wheelchair, swapping recipes, offering prayers,
sharing a laugh and just being a source of support.
I know that Oprah is a tough one to convince to take on a
project - I know several people who are well known in their
fields who share two of the diseases I have, and have tried to get
Oprah to spotlight how underdiagnosed these diseases are. One
woman was even written up in Oprah's magazine and she was
going to forward my name to Oprah perhaps to be interviewed.
But unless Oprah truly takes a personal interest or has some
personal stake in a situation, I think it's hard to get through her
screeners. But it is always worth a try!
Anyway, excuse me for waxing philosophical. I had a brain scan
this morning, am awaiting the results and am just thankful that I
can come home, log on and get a good jolt of laugher and
inspiration from all of you!
Jill
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Lynnie
IP: 69.207.171.31
12/01/2005
18:11:10 | RE: More Oprah thoughts
Message:
Jill, I hope you don't think me nose, but what diseases do you have?
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karen1225
IP: 72.224.51.37
12/01/2005
18:20:44 | RE: More Oprah thoughts
Message:
Jill, this has become a group of friends, all loyal to one another too. It's so nice to all work together, and have Barbara as our role model! She is one fantastic lady, and I do hope Oprah realizes that this is not just a nail product that works, but one that has fused a group of ladies together who truly care about one another.
I hope your tests come out fine, and that it's nothing serious. I'll say a prayer for you.
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Jill
IP: 68.101.166.106
12/01/2005
18:23:25 | RE: More Oprah thoughts
Message:
Lynnie,
Three years ago, I was bitten by a tick and contracted Lyme
Disease and three other tick-borne diseases - one is similar to
Malaria. But because most doctors in Southern California don't
believe that Lyme Disease is here (it is, there are hundreds or
thousands of us), I went misdiagnosed as possibly MS or
something else. By the time I diagnosed myself and found a
Lyme specialist in northern California, I was already in extremely
advanced stages.
But I also have a history of various of health issues, so my poor
body had already been through a lot before this time. Two
months before being bitten, I had been diagnosed with Celiac
Disease, which is a genetic autoimmune intolerance to gluten.
It's a hassle eating completely gluten-free but at least it can be
managed by diet. I've had Hashimoto's Thyroiditis for years (I
know Deb has thyroid problems too so can relate) but that's
easily managed by medications. I cured myself of chronic fatigue
syndrome and fibromyalgia after ten years, so I have a lot of
experience of using mainstream and alternative medicine to try
to get healthy.
The problem I'm in now is that the tick diseases have so fully
penetrated my brain, me eyes, my central nervous system, my
nerves, muscles, joints, etc. that I can't be cured, but we are
trying to reduce and manage the symptoms, but I will need
treatment for life. The only problem is that I'm allergic or
sensitive to most medications, anesthesia, you name it - so was
in almost complete liver failure this summer from Lyme
antibiotic treatment, and am still recovering from that.
Anyway, the diseases that Oprah has been contacted about are
Lyme Disease and Celiac Disease. Lyme is the fastest growing
infectious disease in the country, has symptoms the same as MS,
Lou Gehrig's and Parkinson's, as well as chronic fatigue,
fibromylagia, arthritis, etc. so there's lots of misdiagnosis. Also,
some Lyme doctors are believing they are seeing Lyme being
transmitted between partners, so it may be far more infectious
than originally believed. It definitely can be passed from mom to
fetus - I know several women who unknowingly gave Lyme to
their newborns. And our blood supply does not screen for it.
Celiac Disease used to be considered only a European disease by
american doctors but the latest study indicates that 1 out of 133
Americans has it. If left untreated, it destroys the lining of the
small intestine, so nutrients cannot be absorbed, often leading
to osteoporosis, anemia, food allergies and intolerances, and
sometimes lymphoma.
Oh, my, I've gone on way too long. I didn't mean this to be a
medical lecture.
The brain scan today was to make sure that I don't have MS as
well as Lyme. But both diseases can cause brain lesions so it will
be tricky to determine the results.
Thanks, Lynnie, for asking. Do you or loved ones have
experience with any or similar issues?
Jill
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joytoday
IP: 69.139.202.143
12/01/2005
18:39:20 | RE: More Oprah thoughts
Message:
Jill, I want you to know from the bottom of my heart, that I am sincerely praying for you. How amazing that you have seemed to be so upbeat, yet dealing with so much...
...Moi and I had a e-mail conversation, 'cause we both felt like there was a bigger or "divine" reason why we have all found one another. Even if there is never any Oprah, which would be so cool, I just pray that we continue to stay together, 'cause I must say you guys are one amazing group of women.
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Lynnie
IP: 69.207.171.31
12/01/2005
18:40:47 | RE: More Oprah thoughts
Message:
THANK you for sharing, Jill. That is horrible that a misdiagnosis has caused you this much misery! And I can just imagine the runaround you've gotten from the medical community. *Gentle* hugs to you. I'll be crossing my fingers for you that your scan shows no secondary effects like MS. I have friends who've had some of the issues you do, but not the Lyme.
Let's see - I have migraines, lactose intolerance, GERD, and mild asthma. Those are nothing (to me) and I've worked around them for years. But, up till last Fall I'd been a teaching assistant and came down with alot of autoimmune symptoms, basically spent the Winter on the couch with aching arms (joints and muscles) and crushing fatigue. I was terrified I had scleroderma, lupus or fibro, as I lost my mother to scleroderma a few years ago. I saw all sorts of specialists with no results till my internist ran a test for Parvo B19, which is the adult form of Fifth's Disease, probably caught from a student. It's rare, but it happens. I'm allergic to aspirin, so the only thing that eased it for me was steroids. I started feeling more lively in May and through the Summer, but the colder weather is starting to make me achy. I'm playing around with Glucosamine at present. You've probably used this one. I'd be interested in hearing your reports on that.
I've seen some of Oprah's coverage on Celiac. Wow is all I can think to say! Autoimmune diseases are the absolute worst. Because of my mother, I get connective tissue testing done every year.
Again, Jill, I'll put you in my prayers.
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Barbara Wheeler
IP: 69.19.14.16
12/01/2005
18:52:22 | RE: More Oprah thoughts
Message:
Well ladies I am obviously healthy as it gets. I can not even consider complaining about lancing my finger ever again! How small and self absorbed! Jill, please know our thoughts and prayers are so with you. Thank you for letting us in on such personal information. You are much loved here!
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Jill
IP: 68.101.166.106
12/01/2005
20:21:59 | RE: More Oprah thoughts
Message:
Lynnie,
My prayers to you, too. I can totally relate to muscle aches and
overwhelming fatigue. It's horrible what you are going through
but thank goodness the culprit was detected, especially
something so rare. As you know, when a person has one
autoimmune disease, there is often a genetic predisposition to
others, so we must always be diligent to be tested when other
symptoms arise. I know I've been screened for lupus all my life
because of sun sensitivity, etc., but so far, the rheumatologists
say that it's not lupus, but the other autoimmune diseases keep
giving me initial false positives. From what I've read and seen
about scleroderma, it is a terrible disease. I am so sorry it has
touched you so personally.
Thank you also to Karen, Joy and Barbara for your well wishes. I
did not mean to use the forum to get maudlin, but I appreciate
Lynnie's question and sharing of her ordeal.
Despite it all, I do believe that laughter is the best medicine.
When I was in the midst of chronic fatigue syndrome, I took
stand-up comedy classes in Los Angeles. Our final "exams" were
to perform at the Improv and Comedy Store. I actually did great,
despite having never performed in a show-biz way on stage,
although I think years of business presentations helped. It was
just a way to try to harness a more humorous approach to
dealing with life's situations, whatever they may be, and finding
the comedy even in challenges. Of course, a lot of my stand-up
material was on the horrors of dating, and there's plenty of
material to draw on for that!
I'm still waiting to hear from my doctor re: results, so hopefully
I'll get good news soon.
Take care everyone,
Jill
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Lynnie
IP: 69.207.171.31
12/01/2005
20:49:53 | RE: More Oprah thoughts
Message:
Jill,
Nonsense, it isn't mauldlin to discuss illness. It's a side effect of living and all the more reason to pamper ourselves! Chronic fatigue and aching gets so despressing, doesn't it? The depression is just one more thing to confuse the situation because my internist likes to say "It could be depression." I don't know how you had the energy for the class and perform. What a feat! But I known how you get desperate to kickstart your adrenaline again.
I agree about laughter and I have witnessed ALOT of serious illness in the past few years, so I also believe in counting my blessings. If I can walk away from an appointment with a diagnosis and a pill to fix it, I'm a happy camper.
Call and nag your doctor tomorrow so maybe you can breathe a sigh of relief over the weekend.
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joytoday
IP: 69.139.202.143
12/01/2005
20:58:03 | RE: More Oprah thoughts
Message:
Prayers to you too Lynnie, I kinda feel like Barbara, the next time that I get the urge to complain about anything, I'll think twice.
You guys truly inspire me, my mom inspires me too.
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Barbara Wheeler
IP: 69.19.14.17
12/01/2005
21:41:46 | RE: More Oprah thoughts
Message:
Jill, you can use this forum for this purpose any time you want to discuss anything!
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