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karen1225
IP: 72.224.51.37
12/02/2005
04:38:39 |
 Subject: More thoughts on Oprah
Message:
Jill and Lynnie, I have fibro, and chronic fatigue and have been tested for lupus, lyme disease, MS and I have only the fibro and CFS. My sister has CFS and celiac disease, and there my be an herititary (sp.) link to it. I have had these since 1992, and most people get the CFS first and then the fibro, but mine is just the opposite. If there is anything we can do or share with each other, I'm here and I'm willing to discuss or share symptoms, pain or just the general frustration with you. The cold weather intensifies my pain too, and makes me feel so much worse. I had to leave my job a year and a half ago because of the fibro and how sick I really am with it, and I receive SS Disability. I miss my job and my friends from work, but I have found new friends here on the NGF forum.
There is a reason we all have been brought together, and beautiful nails and our lovely Barbara Wheeler have been the catalyst who have given us this opportunity. I hope I will be able to help you and you can help me.
I hope you all have a wonderful day, and I'm up early this morning here in the east (NY - Albany), but I will be going back to bed.
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debodel
IP: 66.216.217.10
12/02/2005
08:00:37 | RE: More thoughts on Oprah
Message:
Jill, Lynnie, Joy, Moi, Barb and everyone else on the board - what an awesome evening of posting I missed. But, last night was date night with hubby. He has rotating days off, so I take 'em when I can get 'em.
My prayers to each of you that suffers from a physical or emotional ailment. Yes, I do have rheumatoid arthritis and hypothyroidism - both of which are control, for the most part, with medication now and the rest of my life. But, what a life I intend to have. I lost my beloved Dad almost 14 years ago at his tender age of 59. Oh, how I miss that man. I lost a grandson almost 3 years ago. He was 2 month, 22 days old. We have all suffered or suffer our share of pain or loss, but I do know that someday this body will ache no more. I thank all of you for your prayers and your kindness.
Karen you are so right - there is a reason that we are all here. There is a reason for everything we do. May you all have the most blessed and joyous day.
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Karen
IP: 69.207.171.31
12/02/2005
08:15:05 | RE: More thoughts on Oprah
Message:
I'm glad you started another topic on this. Gee, you have "only" fibro and CFS? I'd say that was enough!!! From what I have read of the ParvoB19, it is thought it could tick off both CFS and fibro, which I suspect could be happening with me, but trying to get an appointment with a rheumatologist is near to impossible. Maybe that will be my New Year's resolution, to take it further, as I now have the genetic predisposition as well. Like I said, I have had moderate improvement but I KNOW I'm not back up to snuff fully. I'm glad to hear you were able to leave work and receive SS.
Doesn't that cold weather just go right through you and head straight to the joints? That's what I noticed most last year, my total intolerance for it.
Karen (and Jill), help for this sort of chronic illness often comes best in the form of sharing and commisserating with others. People around you don't get that you NEED your afternoon catnap in order to do all the things you want to do during a given day. If my mother were alive (and healthy) she would label me lazy because she came from that European stock! The best gift I've given to myself throughout this was giving myself permission to give in to the fatigue when I have to. We women are such overdoers, to the point where we can plague ourselves with guilt if we don't have the drive we used to have that kept us hopping everyday till 11 pm! Enough already! A nap is no good if you are dreaming about doing laundry and vacuuming.
Wishing all a painfree day!
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Scarlett
IP: 12.146.183.59
12/02/2005
09:58:12 | RE: More thoughts on Oprah
Message:
To all of the posters,
I have a few health issues but I am never going to complain again. They are so minor in comparison to some of the posts here. Ladies my heart goes out to each of you and I want to thank you for the wake up call to realize even though I have more aches and pains than in my younger days I am still so blessed. Here's sending out prayers and good wishes to all of you for strength to do what you need to do to have the best quality of life that is possible! Take care all of you!
Scarlett
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Lynnie
IP: 69.207.171.31
12/02/2005
10:11:50 | RE: More thoughts on Oprah
Message:
Deb - I think we posted at the same time. I lost my father, my rock, way too early as well, at the age of 67. My mother died 8 years later. Boy, you're never too old to feel like an orphan! I thought they were invincible. I'm so sorry about your grandchild. That had to be heartbreaking for all and a difficult recover emotionally.
Last Winter I thought about people like you with Rheumatoid arthritis and wondered how you do it. Everything you took for granted, like unloading groceries, becomes such a drudge. My hats off to you for your stamina and I'm glad you have found some medical relief. (Pssssst - I tend to "fidget" on that other board.)
Scarlett - Pain is all relative, though! I remember moaning about menstrual cramps, don't you? What I'm saying is that nobody's pain is unimportant.
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Moi
IP: 66.215.188.48
12/02/2005
10:58:36 | RE: More thoughts on Oprah
Message:
I'm with you, Scarlett.
I sit here reading these posts from such wonderful ladies. They are so uplifting and funny and caring and loving that I never ever imagine the pain some of you endure!
I knwo I appreciate so much, all that you add to this board. Thanks for all you do to make my life happier... just better.
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karen1225
IP: 72.224.51.37
12/02/2005
12:31:41 | RE: More thoughts on Oprah
Message:
KAREN, You know it's funny that you mention that Parvo virus. My sister had this dog that was just insane. It would stare her down, and wet on her oriental carpeting, and she was constantly biting and gnawing as a puppy does, but she wasnt' a puppy. My sister was going through a very hard time, and was sick with undiagnosed CFS, and I used to have to go with her for the Dog Obedience training she enrolled this dog in. She stopped at a store, and when she got home, she asked me if I had given the dog a drink. I said I knew Japanese cars had lots of options, but I didn't know about the sinks.LOL. The dog had drooled so much the entire back seat of the car was wet, and she did not have an accident.
It was after being with this dog for all those months for my sister and weeks for me that both of us were diagnosed with our diseases, and I know that the Parvo virus is associate with animals. My holistic doctor said that it wasn't an impossible thing, even though we don't normally get diseases from our pets, but they don't know what causes CFS and Fibro, so anything is possible.
Please let me know how you make out with the doctor.
Deb, I have lost my parents and my brother who was 10 years older than I was, and I have only a sister left, and I feel like an orphan. I can't and won't warm up to my husband's family, I've tried and they are just impossible, so I truly am an orphan. My family won't be around for Christmas, so I would rather be alone, and not sad, just alone and quiet for the day. Christmas isn't the same for me anymore.
Moi, I hope you are fine today, and all is well. I will speak with you soon.
Barbara, I hope you are well and happy too and I hope Oprah calls you very soon, and you at least get to meet her!!!
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Jill
IP: 68.101.166.106
12/02/2005
13:58:19 | RE: More thoughts on Oprah
Message:
Hi friends,
We do share so much in common, whether loss of physical
health or loss of family members or loss of the active lives we
used to live - whatever, loss is loss and I'm glad we can chat
about it. I had contracted Chronic Fatigue Syndrome in the
summer of 1984, which is the year of the first big outbreak in
Incline Village, Nevada, near Tahoe, although I was in Southern
California. I got it long before it had a name - even before it
used to be called Epstein-Barr or any of that. And I'm sure many
of you can relate to the experience of going from being healthy
to suddenly sick, walking into dozens of doctors' offices looking
for a diagnosis, nothing shows up on initial tests, so they say
"Well, you're just being emotional because you're a woman." My
primary care physician said it was just stress because I had been
promoted at work. We could write books on the stories like this.
Back then, I did eventually go to CFS support groups for awhile.
Thank goodness now for the internet. I am very involved in the
Lyme and Celiac communities via the internet, as well as my
local Celiac support group (there is no Lyme support group near
me unfortunately), but I have networked with wonderful Lyme
patients by phone and email. It does make a world of difference
to connect with people who understand and BELIEVE what each
of us is going through.
I am very blessed that my parents are still alive, but elderly, and
this is taking a toll on them. And I have one older brother and a
great sister-in-law. So my heart goes out to you who have lost
loved ones because I have not gone through that with my
immediate family, but it worries me.
My initial brain scan results are back but many specialists will
have to look. The good news is that it is not looking like MS on
top of Lyme. I do have brain lesions, but that can be caused by
Lyme, chronic fatigue syndrome and/or celiac, so my Lyme
specialist will have to review it. It's almost worthless having
these Southern California doctors review the scan because they
know nothing of Lyme.
Anyway, thanks to each of you for sharing your stories and
prayers with each of us - yes, our community goes way beyond
good nails!!
Jill
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joytoday
IP: 71.50.214.162
12/02/2005
14:23:04 | RE: More thoughts on Oprah
Message:
Jill, I am so glad that you got a bit of good news today...
Karen, Lynnie, Moi, Deb--all of you that are working through illnesses, please know that we're all here for you--I know that I can speak for all of us around here. Any time you need to vent, pray, anything; I just hope that you don't feel like you have to go it by yourselves. I had an auntie, she was only in her mid-50's, she died last month of cancer that spread through her entire body. This lady was a H.S. Vice Principal, she seemed like she was doing fine anytime we talked to her, but she didn't let anyone know what she was going through. By the time the family knew anything, her cancer had spread very badly. And, apparently, she had just completely given up, she never received any treatment in the earlier stages (we believe that she knew something was going on in her body), it is just a sad story. The family believes that there was an emotional problem going on, 'cause there were some other indicators in her life that showed that she had completely shut down, she just didn't want to "do" life any more.
That is an extreme case, but, just know that you have some support.
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karen1225
IP: 72.224.51.37
12/02/2005
15:39:59 | RE: More thoughts on Oprah
Message:
Thank you Joy and Jill for your encouragement,and support. You ladies and all of the ladies here are so supportive and caring! It is amazing and we were all brought together for some reason.
Jill, it's funny, I saw a report on Dateline, several years ago, about Lake Tahoe being plagued by CFS and Fibro cases. There were more cases in that area proportionally to any other area in the US. I tell people about that, and they think I am out of my mind! Oh well, now I know someone who knows first hand about it, and that the news report was true.
We are here for all of the ladies, whether we are sick or well, we care about our new friends here on the NGF forum, and we have become like a little family. I like it here, and you ladies ROCK!!!! I value all of you and your thoughts and ideas. Thank you for all you give to me.
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