DOM'S
NEWSLETTER
MARCH 12,
2007
A caring newsletter for
people with FMS/CFIDS and other neuro-endocrine-immune
disorders
20 topics
below are in PURPLE. My comments are in
TEAL. - Dominie
1. READERS
WRITE
"I read your newsletters all the time and
can almost hear you talk although I have never met you. Thanks
again for another GREAT!!!"
"I’ve just discovered your site www.fms-help.com and have been going through it thinking Yes! Yes!
Yes! I often go crazy with people saying, oh, you should do this or
that or questioning what I’m really going through and how I choose to deal with
it. I’m no longer going to feel the need to constantly explain or justify
myself."
"I learned compassion as I
suffered and lost so many things."
"Did you know that my poems
on your site www.fms-help.com/poem1.htm are still
circulating to support groups all over the U.S. and other parts of the
world? It has made it to My space and I have met some pretty great people
via my space and a whole new host of friends with fibromyalgia. I am so
thankful for you and your ministry."
"Your site and
newsletters are going to help massively. It really does look like the
best resource I've seen."
2. SLEEP
DEPRIVATION
From a
reader--
"I can personally attest to the fact that
sleep deprivation blurs ALL kinds of judgments!!! And, it makes one feel very
stupid, too!! I have a lot of trouble sleeping due to my Fibromyalgia; it is one
of the worst parts of having it. That affects every aspect of my life; from the
way I think to the way I communicate!! I think of sleep deprivation as a
form of torture, myself, having experienced it for so many
years!!!"
[Oh! I can so
relate to this! Sleep deprivation is cruel and unusual punishment!
See my grueling insomnia story at www.fms-help.com/insomnia.htm. See my sleep page at
www.fms-help.com/sleep.htm for things I tried. Also, I have a
very helpful list at www.fms-help.com/what.htm with
things I use or do to manage my FMS/CFIDS. I am 95% pain free and also
have the horrible, life-wrecking insomnia under control.]
3.
WHEAT
From a
reader--
"I just wanted to let you know that I
have taken myself off of all wheat products and have noticed a difference in how
I feel with the Fibromyalgia. I have had tremors, fatigue and all the
extras that go with Fibromyalgia. I feel better and I am
experimenting different type of foods right now. I ran into a lady at the
health food store that said she has done the same thing and felt so much
better. Another lady working at the health food store had done the same
thing and said it turned her life around, just getting off of
wheat. Wheat is in so much food, so it has been a challenge, to say
the least. I am curious of how my body will continue doing, so I am
staying off of it for a while. I actually did eat some wheat by accident,
not long ago and the whole yucky feeling came back, with extreme
exhaustion. So, I just wanted to pass this on. They say the best way
to figure it out is to eliminate the food for a good while and see how you
feel."
4.
BIPOLAR
From Reader
1--
"There are other medications
for bipolar besides anti-depressants. And I hope I had not given anyone
the impression, not to take anything. Yipes!"
From Reader
2--
5. COST OF MEDS
- PATIENT ASSISTANCE PROGRAM
From a
reader--
"I tried emailing the person with the problem
with the cost of cymbalta and it would not go through. I have a listing of
all the pharmaceutical companies "Patient assistance programs". You
can put a note in your newsletter with my email miyas@cptnet.com and they can email me with the name of the manufacturer and I
will gladly give them that info. If they qualify their doc will get a
3 month supply which they will give out at no cost to them." -
Judy
6. MOLD IN
EXPIRED PANCAKE MIX
From a
reader--
12.
DIARRHEA
From a
reader--
"Cholestryamine powder cured my
terrible three month bout with diarrhea."
[Cholestyramine is a
prescription powder that reduces cholesterol and removes mold and toxins from
the body. One of the side effects is constipation. In the case of
this reader, that was a blessing! I am presently using CSM successfully
for recovery from a terrible illness I got from working in toxic mold for a
year www.fms-help.com/mold.htm. I learned about CSM from a caring reader who sent me the
book MOLD WARRIORS by Dr. Ritchie
Shoemaker.]
13. THOUGHTS ON
ILLNESS
From a
reader--
"Had never thought about this before, but I
believe & know that 10 yrs. with FMS/CFS has made be a better more caring
person. In reading this latest newsletter where you & a reader both
described feeling like better persons, it brought me to
tears. I think the reason it did is that despite all my
achievements prior to becoming ill, I was thoughtless & very
self-important. Pain & disease is a great leveller and
perhaps carries a message that we need to hear & learn. I am, despite
all, a more caring, understanding & better person/friend & that has
brought me a deep sense of contentment & gratitude. Sounds crazy to
tell anyone that you are grateful for this condition, but if I'm honest with
myself, I see more clearly than I ever have & for that I am
very grateful."
14. KNOTS IN
MUSCLES
From a
reader--
"I was reading #8
about knots in your muscles. Well, I sure have had my share of them and
never heard of anyone else that did until now. Mine come in the top of
my head and they feel like great big lumps but also like bones that
have risen up, it is a very strange thing to me, when this happens to me it is
is so hard to think or concentrate or focus on anything, I have problems
with the trapezius muscles in my upper back and in my face. I
take Lorazepam, it helps some but not as much as it used too, I
massage my head and that helps, also if I put a moist heat pack on my shoulder,
most of the time the lumps go away temporarily until I do something I shouldn’t
like talking on the phone and pressing the receiver to the side of head or
lifting or reaching, sometimes I don’t even know what causes it, it happens when
there is too much noise like my grandchildren or loud talking, I just want to
run out in the yard and find a cool stream and sit so my body can calm
down. I cannot handle lots of noise or yelling, I like it peaceful and
serene. People at church don’t understand and pressure me when I
miss. I wish there were some way they would understand. I know most
people don’t understand about fibro and they don’t bother to try and
find out things like I do, I don’t like to be ask questions if they don’t know
where I am coming from. I would like to have something that explains it
so I could run off copies and give to them so they wouldn’t ask me questions,
most think it is the same thing they
have."
15.
MAMMOGRAMS
From a
reader--
"Regarding your latest newsletter and the
part on Mammograms, I totally disagree with the statement that "if the tumour is
large enough to be detected by a mammogram, it's already in an advanced stage".
My tumour was discovered by a mammogram. It was still quite small and only
required a lumpectomy. Essentially, that mammogram saved my life. I've
heard the theory before that when a mammogram is taken it could break down
cancer cells. Sounds reasonable but I don't want to believe it. I'm going to ask
my oncologist about these two issues next time I see
him."
16. COPING WITH
MISUNDERSTANDING
From a male
reader--
"I've just turned 33 and was diagnosed at 29 having been
struggling with work and other things for about a year. I said I was caught
quickly - my deterioration was frightening though. In less than
three months (it might have even been two) I went from being able to do a full
days work....to almost not be able to walk up a moderate hill near my
house. I know friends mean well, but some of the stuff I hear drives me
crazy. I've just about reached the point where I don't want to talk to
anyone about this anymore unless I know they have something similar because, as
you say yourself, all that comes back so often is words to the effect of, "Yes,
I get tired too sometimes." or "Why don't you just take yourself out and do
something?"
[Oh so true! See Terri
Been's classic article, "My Name is Fibromyalgia" at www.fms-help.com/mnif.htm. Also, see www.fms-help.com/men.htm for stories
from other men with FMS/CFIDS. This is an "equal opportunity illness - not
just a "women's disease."]
17. WORK FROM
HOME
"Has anybody found any "Work from
Home Jobs" that are legit jobs & don't cost anything to do??? I'm really
wanting to find a job not a business of my own. Something like medical
transcription, data entry, customer service, putting products together, mailing
things...something." - Reply to Denise byhizgrc@hotmail.com
18. READER CAN'T GET PAIN
MEDS
From a
reader--
"I WENT TO A NEW DOCTOR [D.O.] EARLIER THIS WEEK. SHE IS
REALLY NICE, BUT I ENDED UP BAWLING MY EYES OUT YET AGAIN. I
WENT IN AND TOLD THEM I NEED SOMEONE TO MANAGE MY PAIN. SO WHEN
SHE CAME IN TO TALK TO ME, THE FIRST THING SHE TOLD ME IS SHE WILL NOT PRESCRIBE
PAIN MEDS AND THAT SHE DOESN'T WORK WITH CHRONIC PAIN ISSUES. I TOLD HER I WAS
SORRY AS I WAS INFORMED SHE HAD WORKED WITH ANOTHER PATIENT WITH FIBRO AND
THOUGHT I HAD FOUND SOMEONE TO ADDRESS MY PAIN ISSUES.
I TOLD HER THAT I WASN'T LOOKING PER SE FOR PAIN MEDS
BUT TREATMENT FOR THE PAIN, LIKE O.M.T. OR NEUROPATHY MEDS AS I STILL HAD A
BULGING DISC IN MY LOWER BACK AND IN MY NECK. I ALSO TOLD HER
ABOUT MY FALLING ALOT.
SO I AM GETTING A REFERRAL TO A NEUROLOGIST. THIS MEANS
TRAVELING 1 HOUR...SHE TOLD ME SHE DIDN'T KNOW ANY DOCTOR IN THIS REGION,
MEANING THE ENTIRE WESTERN PORTION OF KANSAS THAT WOULD PRESCRIBE PAIN PILLS.
THAT IT JUST WASN'T DONE OUT HERE.
SO HERE IS MY BIG VENT.....IF I HAD CANCER, WHICH I AM
NOT SAYING I WANT CANCER, I WOULD BE TAKEN SERIOUS FOR PAIN AND MY ILLNESS. BUT
BECAUSE IT IS FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME, THE TREATMENT YOU GET
BY THE MEDICAL FIELD AND MOST PEOPLE IS IT IS ALL IN YOUR HEAD.
ANOTHER THING THIS DOCTOR SAID I HAD ALMOST LAUGHED AT IS WHEN
SHE HAS A MOM TO BE DELIVERING SHE REFUSES PAIN MEDS AND AFTER A C-SECTION SHE
MAY PRESCRIBE 2-3 PAIN PILLS FOR THAT. I WONDER IF SHE HAS EVER HAD A
CHILD?"
[Do you feel emotionally
invalidated by your doctor? Have you left a doctor's office in tears
because he/she didn't understand you, or even put you down?? I
have!!!! Take a look at my doctors page at www.fms-help.com/doctors.htm to read experiences of some of my readers. You won't feel
so alone. I feel sorry for this reader, because bulging discs are
excruciating - my mom had to have back surgery because of it, and she's VERRRY
tough, but the pain was totally debilitating. This dear reader is in need
of a GOOD DOC who will HELP her!]
19.
COINCIDENCES
"Your story about the radio - the
realization that there's a purpose to your illness was incredible and parallels
my own experiences this past week. I too learned that the cfs/fibro has a
purpose in my life and I went from fighting it (because I thoroughly believe
that a higher power is more than capable of curing it) to accepting it as a gift
in its own right."
"I do not believe in
coincidence...I know that God orchestrates all things! I am so glad to
know that you are a Christian! I didn't know that until
now."
20. WATCH THIS
VIDEO! - PRESCRIPTION FOR DISASTER
Got this link from a
reader http://www.mercola.com:80/display/router.aspx?docid=34932 - a
video on Dr. Mercola's site about drug company influence on the FDA. The
FDA protects the financial interests of the pharmaceutical companies, not the
welfare of patients. A recent example is the tragedy of Vioxx and the
dangers of Prozac. Patients (or their families) testify.
Prescription drugs are killing as many people as were killed in the Vietnam
War. Approval of a drug by the FDA doesn't mean it is
safe! Advertising of drugs on TV and in magazines is misleading and
does not serve the public interest.
Hope you
found some helpful tidbits in this newsletter. Here are my personal
stories and you will see why I keep writing the
newsletter--
Fibromyalgia
Chronic Fatigue
Insomnia
What I'm Using
Dominie Soo
Bush