26. HELP CHILDREN WITH
CFIDS
27.
"THE THIEF OF MANY LIVES"
28. ADRENAL SUPPLEMENTS OR
NOT?
29. KEEP THE PSYCHOLOGISTS AT
BAY
30. LUNESTA (revisited)
31. ZOPLICLONE FOR SLEEP
32. LOOKING ON THE BRIGHT
SIDE
33. CANDIDIASIS (YEAST
OVERGROWTH)
34. HOW TO SEARCH MY SITE &
NEWSLETTERS
35. PROVIGIL (revisited)
36. DIZZINESS & HEAD
RUSHES
37. IVMT = INTRAVENOUS MICRONUTRIENT
THERAPY
38. XYREM (GHB) FOR SLEEP
(revisited)
39. FIBROMYALGIA & FATIGUE CENTERS
(revisited)
40. COLLAGEN FOR PAIN & SLEEP
(revisited)
41. WALL STREET JOURNAL ARTICLE
(revisited)
42. TENSION INDUCED PAIN
DISORDERS
43. SUGAR & WEIGHT
LOSS
44. CREON
FORTE
45. ROSIE HAMLIN
CAMPAIGNS FOR FMS AWARENESS
46. CFIDS LOBBY
DAY
47. IS FIBROMYALGIA
INHERITED?
48. WORKING FROM HOME
(revisited)
49. SPIRITUAL UPLIFT
CORNER
50. DOMINIE'S PERSONAL
UPDATE
26. HELP
CHILDREN WITH CFIDS
From a reader--
PEDIATRIC PENNIES®
How many pennies do you come across each year?
This year P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune
Disorders Organization for Research and Advocacy and P.A.N.D.A., Inc. - Patient
Alliance for Neurological Disorders Assistance invite you to find out by
participating in Pediatric Pennies®.
The idea is simple. Find an old jar or box and
name it Pediatric Pennies. Every time you
get a penny, put it in your container. The project can be for the school year or
calendar year. The campaign ends the week of May 12, 2006, which is
Neuroendocrineimmune Disorders Awareness Day. Neuroendocrineimmune Disorders
includes Chronic Fatigue Syndrome, Fibromyalgia, and Gulf War Syndrome, among
other illnesses. Little is known how and why it affects children.
We invite every school in the U.S., office
workers, businesses owners and many other organizations to participate in this
project. Everyone can be involved in raising awareness of Pediatric Chronic
Fatigue Syndrome and Pediatric Fibromyalgia. Help us find a cure for Pediatric
Neuroendocrineimmune Disorders. Commit to the Pediatric Pennies®
project by visiting www.pandoranet.info or www.Panda-clinic.com to help
end the suffering.
Pat
Fero, Executive Director of P.A.N.D.A. adds "The situation for children with
Neuroendocrineimmune Disorders is perilous. Currently, little kids can be
pressured and cajoled into participating in activities they cannot possibly
accomplish. Expectations are out of line with the child's intellectual,
emotional, social and physical abilities. Failure follows and instead of a
growth in self-reliance, these children experience self-doubt and self-loathing.
In middle school and high school, the situation may worsen to the point where
kids drop out as soon as they are able. It is a no win situation for kids,
parents and school personal. Pediatric Pennies seeks to change the outlook for school children with these
illnesses. With proper diagnosis, a treatment protocol and accommodations in
school curriculum, children with CFS, FM and other Neuroendocrineimmune
disorders can thrive and become healthy adults."
Jill Mclaughlin, the mother a of child with CFS
(Chronic Fatigue Syndrome) and a nationally recognized advocate for Children and
Adults with CFS states: "There is still a lack of awareness to the fact that
children become ill with CFS; yet many experts agree that if anything, children
are more seriously affected than adults. My daughter was a very active,
intelligent, social child who was frequently coming down with what we thought
was the flu. We took her to doctors and she would seem better, only to get sick
again. She missed a good deal of school, but was forced to try to catch up on
her own. It took several years and visits to several doctors before she was
finally diagnosed with CFS in the 6th grade. We were relieved to have a
diagnosis, but at the time had no idea of the seriousness of the illness.
Due to the general lack of awareness and
misconceptions, as her parents we were reported to the Department of Social
Services because of her frequent school absences. It is abusive to send a child
to school when they are ill, but unfortunately, we were accused of neglect
because we did not send her to school. Children are virtually being punished for
being sick… Without adequate research and treatment, these children and their
families will continue to suffer, not only from the illness itself but from the
ignorance surrounding it."
We invite you to join with us in using your
pennies, to fund research to find a treatment and a cure for Pediatric
Neuroendocrineimmune Disorders. P.A.N.D.O.R.A.,
Inc. mission is to raise community awareness, organize patient medical
conferences, establish partnerships in our community, support increased research
funding, encourage empowerment groups and advocate for quality of life issues
for persons with Neuroendocrineimmune Disorders (PwNEIDs).
P.A.N.D.O.R.A. and
P.A.N.D.A. www.pandoranet.info
will donate posters for school libraries, school classrooms and
offices. The five schools that raise the most for this special project will
receive a special letter of commendation. Please contact Rebecca Artman at
advocacy@pandoranet.info for
more details.
27. "THE
THIEF OF MANY LIVES"
Kathleen Houghton, an FMS/CFIDS sufferer,
wrote an incredible article called "The Thief of Many Lives." You can
find this thought-provoking article at
http://wwcoco.com/cfids/kathleenthief.html
It may seem negative, but she tells it like it is! If you have people in
your life who do not understand your illness, this article might be a great
help! (It's also a link from my page at www.fms-help.com/thief.htm.)
28. ADRENAL
SUPPLEMENTS OR NOT?
From a reader--
"Unless I know I have a deficiency in
something I will not use it. It needs to be proven by blood work. I had two
acute adrenal crises and almost died. It was not because my adrenal glands were
shot, it was from a Drs. neglect to place me on Prednisone and then not wean me
from the drug. To fool around with the adrenal glands is not a good
thing, the reason why is this...they become lazy and forget to work by
themselves. Get testing done first before fooling around with these
glands. Without cortisone manufactured from these glands you can no longer live.
I was rushed twice to the hospital and placed on cortisone....my glands forgot
how to work." [NOTE FROM DOMINIE: Comments,
anyone?]
29. KEEP THE
PSYCHOLOGISTS AT BAY
From a newsletter reader--
"Thanks for your efforts on keeping people
abreast of new information about Myalgic Encephalomyelitis/CFS &
Fibromyalgia.
I wanted to remind you that we need to keep the name
Myalgic Encephalomyelitis and the neurological classification (ICD-10 --category
G93.3) in order not to get overrun by the psychologizers.
Dr. Malcolm Hooper in the DVD, Engaging with Myalgic Encephalomyelitis, mentions
this and also the need to adopt the Canadian Consensus Criteria. If you
don't have the video yet, you can get it here: http://www.mesupportnorfolk.org.uk/media/purchase.htm
"
30. LUNESTA
(revisited)
1. "I JUST STARTED
TAKING LUNESTA FOR SLEEP AND IT WORKS BETTER THAN ANY OTHER SLEEP
MEDICINE ON THE MARKET. IT IS VERY EXPENSIVE. 30 PILLS FOR 120.00. I
HAD TAKEN EVERYTHING. THIS LEAVE A BITTER TASTE IN YOUR MOUTH THE NEXT DAY FOR A
LITTLE WHILE, BUT WHO CARES. I STILL DON'T SLEEP STRAIGHT THROUGH THE
NIGHT. SOME SLEEP IS BETTER THAN NONE."
2. "I've had a prescription for
lunesta for several weeks now. On me, Lunesta doesn't work quickly like it says
but takes about 2 hours to have a good effect. Of course, I don't go to bed
right away like I did when I first started taking sleep aids. Also, from what I
can tell so far, Lunesta does make me groggy the next morning. I liked Ambien
much better but I grew tolerant to it, so I suppose that Lunesta is pretty good
when a person can't sleep. I have wondered if I am somewhat tolerant to Lunesta
since I already have a tolerance to Ambien. It didn't help my husband very much
at all, and when we split the tablet in half, it left a horrible taste
in my mouth."
3. "I have taken
Lunesta and while it does seem to improve my sleep, I can feel it in my brain
about 20 hours later, almost like I'm high. It's odd, because
even Ambien, which causes amnesia in me, doesn't usually do that. I'm
still trying to determine if it's the Lunesta or some other problem, as my
kidneys aren't in great shape anymore. I also have Interstitial Cystitis
along with CFIDS and FMS, so I'm up all night in the bathroom anyway, so sleep
meds are necessary. (I can't sleep more than 2 hours every 24 without pills
anymore...sigh.) But at the same time, I have to wake up frequently to go
so I usually find the side effects of the meds to be stronger because I have to
get up so often at night. I do have to admit that the biggest bad side
effect from it for me is the horrible taste in my mouth, like I've been vomiting
hard for hours. I have enough problems with chronic nausea and getting
enough to eat because I'm so tired, and having an icky taste in my mouth that I
can't wash out makes it worse. Because of possible Sjorgren's, my mouth is
always extremely dry anyway, so meds that dry out my mouth more or cause a
bad taste affect me even worse. I guess I'm still trying
to figure out if it works well enough for me, and I still alternate it with
other meds so I don't get too tolerant to any one medication."
4. "My fibro doc prescribed Lunesta for me for the
nites when i have not had good sleep the previous nite. Am to
take it only then, as a help to 'catching up' (although we know we really cant
do that). I have tried it twice after nites with little sleep.
It works wonderfully, I slept about 7 to 8 hours with no
"morning hangover." Only thing i wasn't particularly fond of is that it
did leave a bad taste in my mouth the following day. But as far as the
sleep went, it was great."
31.
ZOPICLONE FOR SLEEP
From a reader--
"I live in Canada. I just wanted to let
you know that,
although I have not tried Lunesta, I have been taking
Zopiclone for sleep
for many months with no side effects
noted. My doctor said it's been around
for a long time,
well-studied and he feels comfortable prescribing it
indefinitely if
needed.
http://66.102.7.104/search?q=cache:5WeUBW5SbNcJ:www.regence.com/trgmedpol/drugs/dru114.html+Eszopiclone+zopiclone&hl=enThis is a quote from the site above:
"Eszopiclone is the
s-isomer (the biologically active component) of
zopiclone, a sleep medication
that has been extensively studied and
widely-used in many countries. [3,7-26]
Zopiclone does not have Food and
Drug Administration approval for marketing
in the United States."
I don't know why it's not approved by the
FDA. On the other hand, we don't
seem to have Ambien in Canada.
My doctor didn't know what it was when I
asked for it."
32. LOOKING ON THE
BRIGHT SIDE
From a reader--
"I look at fibromyalgia as an opportunity to do the things I
never had time to do because I was to busy having a career. Now I have no
career, no deadlines, no trying to impress anyone. I can focus on my
family, my interests, and enjoy the things I never had time
for." [NOTE FROM
DOMINIE: This is one way to make lemonade out of
lemons!]
33. CANDIDIASIS
(YEAST OVERGROWTH)
From a reader--
"After years having vaginal Candidiasis, I took the test
last week and I am free from this fungus. I thank you for
telling me about 3-Lac last year. I only got better
4-5 months later that I was taking 3-Lac (4 whole cans). But the most important
thing is that I´m happy and don´t have this condition anymore.
After 2 months taking 3-Lac with no good results, my option
was for an integrated treatment: stay on diet with low carb, but also include
many vitamins (especially C), antifungals alternating (garlic, berberis,
fluconazole-only 1 time) and vaginal douche. I´m sure
that 3-Lac was very important to my cure and I´m still taking one
packet/day." [NOTE FROM DOMINIE: I use a natural
antibiotic to fight yeast infections that try to get started. It works
well most of the time, which saves me a trip to the
doctor.]
34. HOW TO
SEARCH MY SITE AND NEWSLETTERS
Looking for specific
information on fibromyalgia or chronic fatigue syndrome? Or maybe
you read something in one of my past newsletters and can't find it now. No
problem! Use the search
link on my homepage at www.fms-help.com -
it will search my entire website and all of the newsletters (past and present)
for your topic of interest or concern. Here's the direct link if you want
to try it now--
35. PROVIGIL
(revisited)
Below are some responses I received about
Provigil and insurance--
"I too am on Provigil and have been for a
couple of years. One on your readers said that her insurance would
not cover it. After I had been on it for about 9 months or so, my
insurance denied me. I was furious, I knew that there was
no way that I could even begin to function without it. The first
thing I did was order it from Canada so I could save money on
the prescription while fighting the insurance company.
Then I wrote a letter explaining how with out this medication I would be forced
to go out on SS benefits. I am a single mom who at the time was
running my own retail buisness. I sent this letter to The President, Vice
President, my Congressman, Senator to name a few. Well guess what I heard back from all, some just form letters but the
one that counted was from the Senator of N.J.. He was appalled at the fact that
I could not get this medication. He contacted the Head of the Health
council. He gave me her name, #, and sent me a letter that he wrote
himself to United Health Care. Shortly thereafter guess what--I was
approved. Betty, who is in charge of health council, also wrote me and
said if I should ever have a problem again to contact her on her private
#. Long story short everytime it comes up for renewal, No Problem.
It takes a little work sometimes but I really could not
funtion with out this. It paid off and I suggest to others take the time
and do it if you really need it. With computers today it does make it much
easier."
Another reader wrote this--
"My Dr. gave me 3
weeks worth of provigil samples and then when I asked for
a prescription I found out my insurance wouldn't cover it. It's really
expensive, around $250/month. After 3 weeks of feeling great I had to suddenly
stop. So I'd advise anyone who wants to try it to first find out if
their insurance will cover it. Fortunately, I did find away to get a drug called
"adrafinil" or "olmifon" online from Europe as it's sold over the counter there.
It's almost identical to provigil, maybe not quite as strong so you have to take
a little more. It's still expensive, around $70/month for the amount I take, but
cheaper than the provigil. Here's the link: http://www.antiaging-systems.com/a2z/adrafinil.htm They
have lots of other meds on that site that may be helpful for FMS, like
Milnacipran. Just remember--even though you can buy these things without a
prescription, many are strong enough to be considered prescription drugs
here in the U.S. so you may want to talk to your Dr. about it and use caution."
36. DIZZINESS &
HEAD RUSHES
From a reader--
"I am really
struggling with my CFS, It's been 2 years now and I was getting better but now
it's total relapse again!! This is so hard, as you know. My dizziness and head
rushes overwhelm me. Any suggestions? Also, I wake up so very sick in the
mornings, achy, exhausted and dizzy. Any suggestions for that?"
This was my
reply--
Here
is Tip 94--BLOOD
VOLUME:
Dramatic
abnormalities found! It's not all in your head!! Below is a snippet from the
fascinating article found at http://www.chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa072600a.htm
- "Dr. David S. Bell's last major study, with endocrinologist Dr. David
Streeten, yielded a startling discovery: that the vast majority of Bell's
CFIDS patients had extraordinarily low circulating blood volume (a
combination of plasma and the red blood cells via which the plasma delivers
oxygen throughout the body). While his average patients ran about 70 percent of
normal, several patients with chronic fatigue syndrome (PWCs) had only half the
blood volume of a healthy person, an amount so low that it would ordinarily
cause shock and prove fatal in a car accident (as apparently happened to
Princess Diana during a 2 1/2-hour drive to a French hospital). Bell
hypothesized that the low blood volume could help account for the prevalence of
orthostatic intolerance (worsened symptoms upon standing) in CFIDS, because the
limited amount of blood tended to pool in the legs and feet, with a
corresponding drop in the amount available to the brain. The result? That common
sensation of overwhelming gravity and of wearing lead boots. Other research has
added to the mounting evidence that this is a core problem in CFIDS, including
reduced cerebral blood flow on SPECT scans and neurally mediated hypotension
on tilt-table tests."
37. IVMT =
INTRAVENOUS MICRONUTRIENT THERAPY
From a reader--
"I went to the website for KABC Los
Angeles and this is the
story..."
Fibromyalgia
Three years ago, Jeanne Langlais couldn't pick up a brush
to fulfill her
favorite pastime. She also could not exercise. The chronic
muscle pain
forced her into early retirement. After two years of tests, she
finally got
the diagnosis: fibromyalgia.
RelatedLink
www.clinicaltrials.gov"I
couldn't paint anymore, I couldn't lift my arms up. Your thighs ached
when
you stood up, my arms ached, my neck ached. I couldn't understand
why."
But finding treatment was another story.
"Anti
inflammatories, pain killers, anti-depressants, and none of them
worked for
me," she said.
So, Jeanne sought
an alternative treatment called
intravenous micronutrient
therapy. I.V.M.T. is a cocktail of highly
concentrated vitamins injected
into the vein.
"By about the
5th treatment, T started to feel better. And by the 6th
treatment I had no
pain. I was clicking my heels," Jeanne said.
Dr. David Katz, is one of a
few doctors using I.V.M.T. He's treated more
than 60 patients so far. About
80 per cent of them have had good results.
"If I'm able to help patients
who for years have suffered and couldn't find
help," Dr. Katz said, "it
doesn't get any better than that."
Katz is conducting a clinical trial on
I.V.M.T. sponsored by the National
Institutes of Health. He says the
treatment has few side effects, but a
major drawback is cost. It's not
covered by insurance.
Not yet, at least.
"If we prove that this is
a cost effective therapy for fibromyalgia, it then
becomes a reimbursable
commodity," Katz explained.
For Jeanne, the $55 a week injections are a
hardship. But she'll continue
them, she says, because of the promising
picture they paint for a future -
without pain.
[NOTE FROM DOMINIE: Some doctors say
that "leaky gut" syndrome--also called "intestinal permeability"-- keeps people
with FMS/CFIDS from properly digesting their food and absorbing nutrients.
This may be why intravenous nutrients can help. Look up the "Myer's Cocktail"
online.]
38. XYREM (GHB) FOR
SLEEP (revisited)
From a reader--
Orphan Medical Issues Xyrem Prescriptions Update
ORPHAN
MEDICAL, INC. (Nasdaq:ORPH) announced that the total number of
Xyrem(R)
(sodium oxybate) oral solution prescriptions filled in the six-week
period
ended May 15, 2005, was 5,268, up from both 2,962 for the same
prior-year
period and 5,010 for the six-week period ended March 31, 2005. In
addition,
the number of prescribers increased to nearly 2,450 from
approximately 1,150
a year ago.
Xyrem is currently marketed as the first and only approved
treatment for
cataplexy, a sudden loss of muscle tone, a debilitating
symptom of
narcolepsy. An sNDA for Xyrem is under review by the FDA and, if
approved,
is expected to expand the Xyrem label to encompass the other
primary
symptoms of narcolepsy, specifically the reduction of excessive
daytime
sleepiness (EDS) and improvement in fragmented nighttime
sleep.
The Company reiterated that the data from the clinical trial
designed to
evaluate Xyrem in the treatment of fibromyalgia syndrome is
expected to be
available in the second half of 2005.
39. FIBROMYALGIA &
FATIGUE CENTERS (revisited)
From a reader--
"There is a chain of Fibro and Fatigue
clinics popping up around the country. I've recently started going to the
one in the Atlanta area, and I am really impressed. Readers can check out
the website at www.fibroandfatigue.com to see what they are
about. I've just gotten the results of the extremely detailed bloodwork
they did, and they uncovered a lot of borderline and fairly serious
problems. Under the care of an MD, and using a lot of nutritional
supplements tailored to each persons needs and a few prescription drugs if
necessary, they tackle the whole body's problems. I am thrilled so far,
even though I've only been three times. The nurse who has worked with me
is an older lady and was an operating room nurse for over 25 years. She
said she has never seen results with fibro like they are seeing at the clinic --
about 80% of patients report significant improvement. And their plan is to
get a patient on a maintenance routine as quickly as possible, not have people
dependent on their clinic for the rest of their lives. The staff is
wonderful and very professional (and at the Atlanta clinic, a bunch of
Christians!), and they really have an orderly plan for treating fibro
and fatigue. It is pretty pricey, but insurance
should pay for a lot of it; and hey, as badly as I have hurt for 22 years, I'd
much rather spend the money on getting well than grasping at straws...which
never works for me." [NOTE FROM DOMINIE: For more on the
Fibro & Fatigue Centers, see Topic #29 in the newsletter at www.fms-help.com/December2004Page3.htm]
40. COLLAGEN FOR PAIN
& SLEEP (revisited)
From a reader--
"I have recommend collagen to two here
in California and they are taking it and it is
working. You must take
it at least 3 months at first to see an improvement.
It worked on me
in one day with a great night of sleep! No PAIN!
I have
degenerating discs and 2 pinched nerves also in my neck, plus
arthritis in
my knees, and Praise the Lord, NO PAIN. I get my collagen from
www.lifesource4life.com."
41. WALL STREET JOURNAL
ARTICLE (revisited)
I
was asked to tell more about Topic #24: FIBROMYALGIA - A DISEASE OF THE
CENTRAL NERVOUS SYSTEM that appeared in the June newsletter
www.fms-help.com/June2005Page2.htm, so
I obtained this additional
information from the reader who told me about it--
"The article from the Wall Street Journal was
written on 8-03-04 by Leila Abbpud, The Wall Street Journal. The
title is Off-Label Treatments, New Drugs Target
Fibromyalgia. Mike found it on www.immunesupport.com. Apparently
you have to subscribe to the Wall St. Journal to access articles. It is
also on our website under the April information. Go to www.mypeoplepc.com/members/purdon/fibrofriendsofnorthernkentucky My husband has a few other articles listed.
Glad it was useful to you."
42. TENSION INDUCED
PAIN DISORDERS
From a reader--
"In these pain disorders the physical pain is not
attributed to
mechanical or physical dysfunctions, but rather it is
caused
by the person's feelings, personality, and their
subconscious
state. Emotions and mental activity that generate
physical
pain are fear, anger, guilt, frustration, worry, resentment
and
jealously. It has been found in these pain disorders that the
people
who are highly likely to create physical pain as being
similar to the Type A
behavior traits."
[NOTE FROM DOMINIE: This is
based on John Sarno's work. Take it with a grain of salt. Some find it
helpful--others strongly disagree with his theories. The following quote
by Susan Sontag is relevant here: "Theories that
diseases (illnesses) are caused by mental states…are always an index of how much
is not understood about the physical terrain of the disease."
This has been proven over and over again in the annals of medical
history!]
43. SUGAR & WEIGHT
LOSS
From a reader--
"I am insulin resistant (pre-diabetic) and have been told to avoid sugars
(except
fruit--2-3/day). My health has improved greatly since I got off
sugar 2 1/3
years ago. I've lost 149 lb. and other than the
FMS/insomnia I feel good."
44. CREON
FORTE
From a reader in Australia--
"I am thrilled to report that for the first time in
five years, I have my life back. My doctor commenced me on a trial of
Creon Forte six weeks ago and the results have been remarkable (Creon Forte
assists in the utilisation of protein). Since commencing Creon Forte, I
would estimate my energy has increased by 75% and my pain has reduced
by about 50%. I still have FM but at a manageable level. My prayers
have been answered. 5 years ago I underwent urine analysis to test the
level of amino acids in my body and at the time the results indicated I had a
problem absorbing protein. It has taken 5 years for my doctor (who
"specialises" in CFS and FM) to 'discover' Creon Forte and when I see him next week I
hope he also be thrilled that we have eventually found something that
helps. My doctor is Dr. Gary Deed - he is amazing the way he cares about
his patients and is continually researching to find something that could make a
difference in his patients' lives. I hope other FM sufferers will also one
day find the relief I have.
Creon
Forte is a 'pancreatic extract - enteric-coated minimicrospheres - enzymes
derived from porcine pancreas' made by Solvay Pharmaceuticals, Germany. I
take one with each meal."
Update from the same reader
6 months later--
"I am still on the Creon Forte and yes,
I believe it has made a big difference. I am a lot stronger (muscle-wise)
and my family have commented on how much more active I am. I definitely
have more energy. My doctor is also pleased with the results so I will
stay on it. I saw a Naturopath who specialises in weight issues (as I had
gained weight and conventional diets did not work as I have lactose intolerance,
wheat intolerance and have had bowel surgery so am unable to cope with fibre!)
and she was also pleased I was on the Creon
Forte."
45. ROSIE
HAMLIN CAMPAIGNS FOR FMS AWARENESS
More than four decades after her sweet, teenage
love song "Angel Baby" earned her an appearance on "American Bandstand," the
music of Rosalie "Rosie" Hamlin can still make an impact.
A lot has changed since 1961 when Hamlin and her band, Rosie and
the Originals, recorded the famous ballad in an old airplane hangar in
California. "Angel Baby" went gold and had sold 4 million copies by 1965. John
Lennon recorded a version of the song. Hamlin even opened a concert for the
Rolling Stones. The former teenage singing sensation who grew up in southern
California has since been recognized by the City of Los Angeles for her
"continued years of music and entertainment," had a postal cancellation stamp
made in her honor in West Covina, Calif., and had the City of National City
(Calif.) proclaim March 28, 1996 "Rosalie 'Rosie' Hamlin Day."
But it hasn't all been
rosy for Hamlin, who now resides in Los Lunas. About five years ago, she was
diagnosed with fibromyalgia, a disease characterized by chronic pain. Despite
affecting millions of Americans, the disease remains somewhat shrouded in
mystery.
[READ THE ENTIRE
ARTICLE AT http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6470.]
46. CFIDS
LOBBY DAY
Article written by a newsletter
reader....here's a short excerpt:
"Most people that suffer from CFIDS are too
disabled to take a trip to Washington. Many are bedridden. Of those that managed
to show up in our group, some were unable to continue their meetings throughout
the day. Some struggled through the morning sessions and that was all they could
manage. Others were unable to get to Capitol Hill until the afternoon, because
it took every bit of strength they had in the morning just to get out of bed.
Others made it through the day but then spent the next 72 hours in bed to
recover.
How do you show up when you can't show up?
First, you depend on people who will show up in your place. Healthy advocates
willing to speak on your behalf, like the staff of the CFIDS Association and the
loved ones that care about you and the illness you suffer - such as the parents
and other relatives of CFIDS patients that joined our group.
Secondly, you participate in lobbying at a
distance, like the thousands of people with CFIDS who mailed letters as part of
the Million Letter Campaign leading up to May
12, organized by a CFIDS sufferer, and the thousands who sent email and made
phone calls to Capitol Hill on May 12, as part of the Virtual Lobby Day
organized by the CFIDS Association."
47. IS FIBROMYALGIA
INHERITED?
Excerpt from
an email I received--
"I have an interesting
inherited illness called Familial Mediterranean Fever that
has CAUSED my fibromyalgia. This post tells a little of my story: it gives a
brief overview of the Melungeons from whom I think I probably inherited this
illness - they were in the corridor of NC/VA/KY/TN/WV early on in our
American history. But I also have some Jewish ancestry that I did not know
about as well as Arab ancestry that was found via DNA and goes back 10,000
years. This post also tells HOW Familial Mediterranean Fever works and its
connection to the symptoms of fibromyalgia with source
documentation." [NOTE FROM DOMINIE: For the complete email on this
subject, write me at dom@fms-help.com
Below are sites...]
48. WORKING
FROM HOME (revisited)
"I too suffer severe Fibromyalgia, Chronic
Fatigue, Myofacial Pain Syndrome, Rheumatoid Arthritis, and was
involved in a bad car accident that broke my neck in
2001. I had to have vertical fusion in C-5 thru C-7 on my neck
spine and my lower back has become so painful, that I can only walk no more
than five minutes without having to stop. My legs and knees and hips just
seem to buckle from the amount of pain. Looks like a wheel chair is in my
horizon if I can force myself out of the house. I worked 17 years for
the State on computers and had to retire in 2005. I took a medical
leave of absence in 2004 and never could go back. My condition only seems
to get worse. I am a single parent with one teenager left at home and if
it weren't for my parents paying all of my bills, including my mortgage, car,
insurance, taxes etc., I would be homeless! What a great way the
government treats the severely afflicted huh? I applied for SSD and was
denied and now I'm on my second appeal. I just had to hire an
attorney who is a pioneer in the research of FM and seems to get SSD
for most of his clients. The only draw back is the money. He gets
$5,000.00 plus office expenses, and I have to fly him down here to Florida from
Arizonia to be at my hearing. If I lose, he will only charge my the
$750.00 flying and his office expense fee. I could very easily
work from home if I could get a job that's not a scam or telemarketing. I
would love to use my computer to do about anything. I know
there's got to be a lot of need out there for it, but I'm not sure how to
begin. I've looked on the Internet, and only came up with a lot of junk
with big promises. I'm thinking about going on www.Monster.Com and
putting in a resume for work at home job. Don't know if I'll get
any hits, but I'd try anything. Whenever a business or company wants you
to pay upfront for a job.....don't take it. I've always been told, that is
usually a scam. I'm 43yrs old. I never would have
thought that at this age I would be disabled, but it could of been worse I
guess. Thanks for writing your inquiry to Dominie, it has me all
fired up about if we can all stick together on this job hunting at home
thing we could succeed. Even if we did the same job together
we would be even better, because we could communicate our days and give
each other comfort and tips to make it through a tough days. Another
problem I have is that I can't sit at the computer for more than an
hour at a time before my butt goes numb and my feet and legs begin to
swell. I'd have to have a job that I could work my own
hours, or I could purchase a laptop and sit in bed. (My only source
of comfort) Since I don't sleep well at night, I could be
working. Ha Ha Ha!!! and I know with encouragement, I could work
lots of hours during a day."
Another reader wrote these words
of caution and advice--
"Working at home can prevent them from getting
their SSD. If they show they can sit for hours at a computer then they
can do it at a job. They need to be very careful especially with a statement 'I
could work lots of hours during a day.' The problem is they can make her
work sitting one hour and then standing the next hour. If she wants to get her
SSD she needs to prove she is disabled. She'd be playing Russian roulette with
her SSD case pending."
[NOTE FROM DOMINIE: This is a good
point. The problem with FMS/CFIDS is its unpredictability. We might
be able to get to a job one day and do fine, but the next day might not be
able to show up due to poor sleep, extreme fatigue, pain, fibro flare,
etc. It's hard for us to keep to a schedule, and that's why working
at home would be ideal. But be careful if you are applying for
SSD.....you must show that your disability prevents you from working at
all.]
49.
SPIRITUAL
UPLIFT CORNER
1. God
wants spiritual fruit, not religious nuts.
2. Dear God, I have a problem, it's
Me.
3. Growing old is
inevitable...growing UP is
optional.
4. There is no key to happiness. The door is
always
open.
5. Silence is often misinterpreted but
never
misquoted.
6. Do the math...count your
blessings.
7. Faith is the
ability to not panic.
8.
Laugh every day, it's like inner jogging.
9. If you worry, you didn't pray...If you
pray,
don't
worry.
10. As a child of God,
prayer is kind of like calling
home everyday.
11. Blessed are the flexible for they shall not
be
bent out of
shape.
12. The most important
things in your house are the
people.
13. When we get tangled up in our problems, be
still.
God wants us to be still
so He can untangle the knot.
14. A grudge is a heavy thing to
carry.
15 He who dies with
the most toys is still dead.
"Seek ye first the
kingdom of God, and his righteousness; and all these things shall be added unto
you. Take therefore no thought for the
morrow: for the morrow shall take thought for the things of
itself." Matthew
6:33,34
"The
fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness,
faith, meekness, temperance."
Galatians
5:22,23
"Be still, and know that I am
God." Psalm 46:10
50. DOMINIE'S
PERSONAL UPDATE
In dealing with my grief for my beloved father www.fms-help.com/eulogy.htm, I am
slowly learning that we don't own people...God does. He only gives them to
us FOR A TIME. Let's appreciate our lives and those around
us. Recently 3 friends died--they were 55, 62 and 37 years of age.
The 55 year old rode motorcycles with her husband for many years, yet died
driving a "safe" car taking her grandchildren to school. The 62 year old
was in ICU for 8 months with painful complications of diabetes before she passed
away. The 37 year old was a pastor's wife who was 7-1/2 months pregnant
with twin boys and was found dead in her kitchen. Life is short! Any
day we are alive we can know that there is a reason why we are still here!
In thinking about these women, what they all had in common were their happy
outgoing personalities, devotion to their families and love for Christ. If
we try to make sense of WHY things happen on this earth, a person could end up
in an insane asylum! In the book of Job, the story of his suffering and
search for its meaning is timeless! I am so glad this book of suffering
and questioning is in the Bible. Job wanted to know WHY too, yet he never
cursed God. My mother has taken great encouragement from this book of the
Bible since my father's death.
As for
my health news, I added some new supplements to my regimen this month from
www.DrRodger.com, as I suspect that I
have adrenal exhaustion. Ever since my parents' life-threatening
illnesses followed by my father's grueling death in January, I have been wiped
out physically and emotionally and I can't seem to get my energy back.
Grieving has taken a heavy toll on me, as well as some business problems
that occured recently. A kind doctor mercifully prescribed Lexapro (1/2
tablet) for depression and Atenolol (1/2 tablet) to help with a rapid heartbeat
from too much adrenaline. I am feeling better these past few weeks.
The immune balancing powder which I started
taking 4 years ago still helps me. I have not been sick at all, except for
a few very mild viruses. I teach piano and guitar students every day,
and I'm around children with colds and viruses, yet I do not catch them
anymore. This is amazing compared to my previous (50 year) experience
of having one lingering viral illness after another. My lifelong immune
weakness ended my school teaching career back in the 1970's (see my CFIDS story
at www.fms-help.com/fatigue.htm).
Other benefits I experience from the immune balancing powder are improved sleep
(I still use mild sleep meds, but they actually work now), my complexion cleared
up, and I have no more digestive, gas or bloating problems. I
sprinkle this powder on cold cereal, or make a shake with
it.
Well,
that's all for now. I hope you have enjoyed the newsletter. Please
know that I read all of my email, but am not able to respond to every
letter. As you can see from reading "Dominie's Newsletter," it is really
YOUR newsletter! Readers supply so much helpful information each month,
and I am happy to pass it along to you!
The next
new addition to my site will be www.fms-help.com/bladder.htm
- a compilation of 150 helpful comments from compassionate and knowledgeable
readers about dealing with urinary frequency, interstitial cystitis (IC), and
other bladder problems. Look for it about mid-July!
Faithfully yours,
Dominie Soo Bush
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THE JULY 2005 NEWSLETTER
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