May 2001
Volume 8, Issue 8 Published monthly by the LV FMS/CFS Support Group
LIVING WITH FIBROMYALGIA/CHRONIC FATIGUE SYNDROME
You and Me
By Sheryl
Prolapse It Isn't
Mitral valve prolapse (MVP) is a common symptom of I do not know for sure when the symptoms began. I
fibromyalgia/chronic fatigue syndrome (fms/cfs). Should thought it was just the fibromyalgia making me feel the way I
everyone who has fibromyalgia worry about having mitral was feeling. I put off asking the doctor about it because I
valve prolapse? Absolutely not! Some may have MVP and figured there wasn‘t much he could do for me anyway. When
never know it. Some may find out that they have MVP, but the shortness of breath became a constant thing, my primary
most will not have it. care doctor thought it was from too much thyroid medica-
Mitral valve prolapse (MVP) is the most common heart tion. But adjusting that medicine did not get rid of the symp-
abnormality. This usually benign condition occurs more of- toms. Finally the cardiologist ordered a stress test which in-
ten in women than in men. The mitral valve is the valve be- dicated possible blocked arteries. The angiogram to check
tween the upper and lower chambers on the left side of the Awareness the Educational
the arteries revealedDayvalve problem. Seminar
heart. One or both of the flaps of the mitral valve may be too I am Group and long-term sick leave of Southern Neva-
Our Supportcurrently onthe Lupus Foundationfrom work while
large so that the valve does not close evenly with each beat experts announce that our annual educational not want to
da are proud toevaluate my suitability for surgery. I did seminar will
of the heart. The imperfect closing causes the valve to bal- this year leave, but it May 12, National working was
be heldgo on sickon Saturday,became obvious thatAwareness Day for
making the symptoms worse. At the same time, I realized I
loon slightly back into the upper chamber. There may also be Fibromyalgia/Chronic Fatigue Syndrome, Gulf War Syndrome, Mul-
a slight leaking of blood resulting in a heart murmur. was not doing my and the autoimmune illnesses. This
tiple Chemical Sensitivityjob atotherlevel of quality I expected ofyear‘s
Between 5 and 20 percent of the population are affected seminar is entitled, “Is Your Environment Making You Sick?”
myself.
by mitral valve prolapse. About 60 percent of these individu- While we be instead of our May we need to will held in
The seminar will focus on fibromyalgia, meeting andrealize that
als never exhibit any symptoms and very few ever expe- some of of Sunrise Hospital from 9 caused5by fibro. Those
the auditorium our symptoms may not be am to pm. Besides our
rience any complications. MVP, generally, does impact life symptoms may be evidence presenting the annual Dr. not
speakers our support group will be of other problems. We canBarbara
afford to hide Al heads from sand because we are afraid of
expectancy or normal activities. According to the research I O'Rourke Award to our Johns in the the Review Journal for educating
have done on this condition, it is most likely inherited. what our illness, Fibromyalgia/Chronic bliss. Ignorance is
others about we might learn. Ignorance is NOT Fatigue Syndrome.
Members of the support group who have read my ar- dangerous. once a year. Your presence is are the keys we
Awareness Day isKnowledge and understanding important. This is
ticles in the last two or three newsletters know that I have need. We can community know that we are here. Looking
your chance to let thenot deal competently with a situation we do for-
my heart. From
developed a problem withPost It Notes what I have been ward tonot understand. on Saturday, May 12 at our Awareness
seeing all of you
When Seminar.
told, my condition is not mitral valve prolapse. Please do not Day Educational you experience a new symptom, ask your doctor
panic thinking you willneeded up manme. You will not!
1. Volunteers all end to like tables on Aware- about the Month—What would you like to know
* Question ofit. Do not assume that it is fibromyalgia. You know
SCHEDULE FOR SEMINAR*
about FMS/CFS?say about ―assume.‖ Talk about what you are feel-
ness a moderate to severe regurgitation through
I have Day on May 12 and at 2001 Wellness andthe what they
valve, Fair June 12-13-14--times are can be readily What have you found to be helpful? your doctor.
mitralHealthbut not prolapse. This condition 8-5 in the 9:00–10:00 Setup and Registration with
ing with your loved ones and
Clark County Governmentmy case at 500 S Grand by
corrected by surgery. However, Center is complicated How doI Iam writing this at theand really doesfor the aboutnew-
find out if doctor end of March know May
10:00–10:30 Welcomingaremarkswho introductions
Central sleep apnea. I have need lots of volunteers for
the effects of FMS/CFS?
Parkway. We will been unable to tolerate the 10:30– sletter so by the time you read this I may have already had
12:00 Panel Discussion
CPAPthis one. Contact Judy 259-6459 apnea. The result is
machine, the usual treatment for or email her at Are there any foods that are badis Awareness Month for people
surgery--or maybe not. May for FM?
Benjamin Kermani, MD Doctor of Internal Medicine
fstebbins@earthlink.net. as high as it should be.
that pressure in my lungs is twice Is there havenew treatments availableDieticianI) always have to
Kerry fibromyalgia and other or (will
who anyMitchell, RD Registered similar conditions. The
special--For those of you who we don‘t know
2. PBS caused the mitral valve to leak, missed the
What has take pills? Chino, Ph.D. Clinical Psychologist ourselves, our
Alan
purpose of Awareness Month is to educate
PBS show about the be the result of damage caused by rheumat- HowTo bewill it take forfriends,to beour community in general
for sure. It could chemical companies, "Trade Secrets" long announced expert on Environmental
family members, our a cure and found? Sensitivities
link to the transcript is
ic fever when I was theLook Great!
hosted by Bill Moyers, a child. It could be caused by an infec- Is there anybody that feelsBarbara O'Rourke cured and if so, how?
about health issues they are they‘ve been Award
12-12:30 Presentations of the that not familiar with. by the LV
You
http://www.pbs.org/tradesecrets/transcript.html We will not
tion. Or it could be caused by something else.
By Fran Does anybody else feel like this is a perpetual virus by their system
P.S. I just received word that I am a Award in Lupus
FMS/CFS Support Group and the Diane Newell candidate for the
know for sure until surgery so good be examined up close
3. Our MESSAGE BOARD is a it can place to post questions Foundation
surgery. Whether it are extremely stressed or overexerted?
that surfaces when theywill be repair or replace can not be de-
about our illness.The fact many am may have the information
and personal. Anotherthat I times have you certainly does
You look great! How member overweight heard that? 12:30-1:30 Lunch** with doctor has theour answershands. Now for
* If youtermined until the Joyce Huston, yourofficial spokespersonit
have access to the internet post valve in his and/or questions
My husband and I went to Church Sunday. So many our
you are seeking. Questions and answers can be posted on
not help the condition. is a matter of Fatigue if my insurance will pay for the sur-
Fibromyalgia/Chronicat http://communitylink.koz.com/lvrj/lvfcfs.
on our message boardwhen and Syndrome, will speak about workplace
web site at to me, my you look great. I had a hard time walk-
people said http://communitylink.koz.com/lvrj/lvfcfs. This is accommodations and perform some of her music
gery to be done in Montana.
still a my left hip is really of support for our group but we
ing, as somewhat new form bad. It‘s the fibro and the Lupus. 1:30-2:30 Dr Lin Chang, MD, An Irritable Bowel Syndrome (IBS)
But gee, I look great! So I shouldn‘t hurt, right? Wrong!!
hope that it will become a regular place for members to ex- researcher and Gastroenterologist will be speaking about IBS. We will
change questions and ideas, andthe pain is inAwareness Day Educational Seminar:
I think a lot of people think answers. our heads, that also answer questions pertaining to a Research study Dr. Chang is
4. just want attention! Not so!
we In March PBS aired "Trade Secrets" hostedYour Environment Making IBS. Sick?
Is by Bill Moyers conducting on You
I the chemical companies. The link to the transcript is
aboutrarely complain, maybe that‘s it. Maybe if I let more 2:30-3:30 Dr Charles Graham, MD Ophthalmologist will discuss the
WHEN: SATURDAY, MAY 12, 2001
people know I hurt. That I just want to stay home and not run
http://www.pbs.org/tradesecrets/transcript.html effect of our illness, medicines, and weather on our eyes.
5. over. Maybe then they would realize be provided)
are happy to welcome Rheumatologist Gregg isn‘t
all WeTIME: 9-4:30 PM (lunch will it‘s true, sheMiddle- 3: 30-4:30 A special video address from Representative Shelley Berk-
LOCATION: Columbia Sunrise both Southwest ley 3186 S Maryland Parkway
feeling well. Las Vegas. Dr. Middleton sees Hospital Auditorium,explaining what is being done by Congress about chronic illness
ton, M.D. to
But Associates HMO patients and with their own of the
Medicallife is not easy, people are busypatients outside lives to and their relationship to our environments.
care whether I hurtto us with a very impressive background
HMO. He comes or not.
See inside for more details
*Schedule may be adjusted to accommodate speakers.
So, I a background in fibromyalgia. For more information **
includingguess I‘ll just continue along life‘s path trying to
Lunch donated by Ian Campbell in honor of his mother, Julie Camp-
you others and hope sometime that maybe
help may contact his office at 877-8330. they‘ll help me.
bell who has Lupus.
As It Is
By Lois
When our Support Group held our first meeting in September We publish a 12-14 page monthly newsletter written by
of 1993 there were 13 people in attendance, 13 very frightened and our members which is sent out nationally regardless of whether
isolated people with a diagnosis of fibromyalgia. I had started the members have paid dues or not.
group, the first in Las Vegas, with the encouragement of Dr. Bar- We provide a variety of handouts about our illness includ-
bara O'Rourke. ing a 12-page new member information package.
When I made the decision to start a support group believe me, We also provide members different ways to meet other
it was not because I needed to feel important or that I needed a people with their illness and to forge new friendships.
project. At that point in my life I felt incapable of thinking of my- Our support group has been the subject of a number of
self in those terms, as did most of our other members. Never did I articles written by the Review Journal‘s Al Johns in his Sunday
dream that almost eight years later how that little group and the column, Action Seniors and Lisa Furguson, a reporter with the
constantly repeated question, ―Fibro…what?‖ would impact so Las Vegas Sun.
many lives including mine. This year one of our Board members, Joyce Huston, has
Initially our members were referred to us by Dr. O'Rourke but been speaking through out the Las Vegas Valley raising
it was not long before we were receiving referrals from doctors, awareness about Fibromyalgia/Chronic Fatigue Syndrome.
hospitals, county agencies and national organizations to name a You will be able to hear her speak and sing at our annual edu-
few. Today we number almost 900 members. We also have not cational seminar, which we have been doing since 1998 with
one doctor to refer to but a referral list of over 100 doctors willing the Lupus Foundation of Southern Nevada. This year‘s semi-
to treat our members or learn about our illnesses. nar will be held May 12th on Awareness Day, a day in which
We are an autonomous group that is run solely by patients we will honor Al Johns of the Review Journal with the presen-
with Fibromyalgia/Chronic Fatigue Syndrome, many of whom are tation of the our annual "Barbara O'Rourke Award" for his
no longer able to work. involvement in the education of others about our illness,
We have a limited nonprofit status with the State of Nevada. Fibromyalgia/Chronic Fatigue Syndrome. It is our way of
But we do not have Federal 501C nonprofit status since our illness honoring the memory of Dr. O'Rourke who passed away from
places major limits on our energy levels and we are not a fund rais- cancer.
ing organization. Instead we chose to use our energies towards Like I said earlier, never could I have dreamed of these
educating ourselves so that we can educate others with our end accomplishments when this group was started, but these ac-
goal being a better quality of life for all of us. complishments are not the result of any one person. They are
We charge annual dues of $10 and collect them by using the the result of the hard work of many people who just like you
honor system so that no person is denied support or placed in an suffer from Fibromyalgia/Chronic Fatigue Syndrome with li-
embarrassing situation due to their financial condition. Our post- mited amounts of energy to give. Over the years they have
age costs are subsidized by ads placed in our newsletter by com- given bits and pieces of themselves working as a team with
munity organizations and businesses. And our newsletter is printed others to make the accomplishments of our support group a
through the generosity of Nevada Power. reality--something we can all be proud of and thankful for.
Since the inception of our support group, our mission state- Just as many of you have been helped by coming to a
ment has not changed. We are still a group dedicated to helping meeting, speaking to someone on the phone or visiting our
each other learn how to make responsible health care choices for web page there are many others out there seeking our help.
ourselves by learning good coping skills, listening to our bodies For that we need a constant supply of volunteers.
and being partners with our healthcare providers. We have two major projects coming up where we are in
We are proud to offer support through: need of people to sit at our information tables. One is our
educational seminar on May 12th and the other is the Clark
Monthly Meetings County Wellness Fair in June.
Our Own Web Site Our logo has in it the words ―Friends Helping Friends‖
A Web Based Message Board going in a circle. Won‘t you please join our circle of ―Friends
E-mail Updates Helping Friends‖ by contacting Judy Stebbins, 259-6459 or
Monthly Newsletters emailing her at fstebbins@earthlink.net to offer your help to
Handouts others who may be as frightened and isolated as you and I
Friendship were when we first came to this support group?
An Annual Educational Seminar
Motivational Presentations We want to thank all the people from our Support
Group and the Lupus Foundation who have worked many
Our monthly meetings have been held at Sunrise Hospital long hard hours to bring us this year‘s Educational Seminar
since our inception in 1993 where we encourage education by pro- and Awareness Day Activities.
viding speakers and handouts. Our meetings are also a place where We also want to wish Sherly Brewer, the leader of our
patients can make friends and feel less isolated. Support Group well with her surgery and hope that she has
We have our own web page courtesy of the Las Vegas Review a speedy and successful recovery.
Journal, http://communitylink.koz.com/lvrj/lvfcfs complete with To all of you we give our most prized gift
message boards and abbreviated copies of our monthly newsletter. of thanks—soft loving ‗fibro hugs.‘
We also offer email communication and support.
REVIEW OF MARCH MEETING
By Mimi Lamb, Secretary for The Las Vegas FMS/CFS
Support Group
If I Had My Life To Live Over If you came into the Las Vegas Support Group feeling down when you left I am
I would have invited friends over to sure you were full of optimism after hearing out speaker Jo Ann Colton. Jo Ann shared
dinner even if the carpet was with us how her sister, Marie, suffered may years and yet was very successful because
stained and the sofa faded. of her positive outlook on the future. At age nine Marie's philosophy was "look to the
future, tomorrow is our future, don't forget the moment. You have the power
I would have eaten the popcorn in to succeed. Don't let age get in your way, it is never to late to pursue your dreams.
the "GOOD" living room and Jo Ann reminded us life is like a bowl of Cherries, once the Cherries are gone life
worried much less about the dirt could be the pits. The second and most important food for thought Jo Ann gave us are
when someone wanted to light a fire the ABC's of life:(Jo Ann's version of Alphabet Soup for life):
in the fireplace. A = Be aware you have choices
I would have taken the time to B = Believe in yourself
listen to my grandfather ramble C = All of us have choices
about his youth. Be a free spirit. You can achieve and exceed in anything you choose.
I would never have insisted the car
windows be rolled up on a The Word Of The Month Is “FICKLE”
summer day because my hair had just By Arlene Kagan
been teased and sprayed. My name is Arlene Kagan and I was sort of diagnosed with Fibro about 12 years
I would have burned the pink candle ago. I say sort of because at that time I was not sure as to exactly what Dr. was saying.
sculpted like a rose before it Twelve years ago the word fickle would never have entered my mind because I thought
melted in storage. this feeling would go away and never come back. At that time as in present time I was
I would have sat on the lawn with my physical and very conscious of my weight and physical being. I thought by having an
children and not worried active exercise life it would make me exempt from fibro and its annoying effects. As
about grass stains. the years went by is when I put the word fickle into play because in my mind whatever
I would have cried and laughed less was happening to me had no rhyme or reason. It was like having a good friend share in
while watching television and your secrets and your life and all of a sudden turn on you. A fickle response hit me
more while watching life. because I in my mind I was doing all the right things and this new found friend (loose-
ly used term) was turning on me.
I would have gone to bed when I was Don‘t remember exactly when I started reading up on Fibro and meeting lots of
sick instead of pretending the lady's who seemed to have similar problems. To bring this article to a quick close I
earth would go into a holding wanted to say that meeting another of our group on the net was actually part of my
pattern if I weren't there for the day. salvation. At this point we haven't met face to face but will in the near future. I feel she
I would never have bought anything has her own set of fickle friends but always seems to relate to me and my f.f. (fickle
just because it was practical, feelings). I hope this short article will bring a new word into your vocabulary because
wouldn't show soil or was guaranteed it sure fits in mine. The word of the month is FICKLE.
to last a lifetime. Fondly Arlene Kagan
Instead of wishing away nine months Share your tips for dealing with aching feet and legs on
of pregnancy, I'd have cherished every our Friends Helping Friends Message Board.
moment realizing that the wonderment http://communitylink.koz.com/lvrj/lvfcfs (Bookmark the
growing inside me was the only chance site for future reference)
in life to assist God in a miracle. COPING ON L
I would never have said,
Help For Lupus Patients-- Lupus and Fibromyalgia/Chronic Fatigue Syndrome
(FMS/CFS) are very closely related. Most people with FMS/CFS do not have Lupus but
"Later. Now go get washed up for dinner." AWARENESS DAY IS COMING UP—EDUCATE YOU
many Lupus patients have FMS/CFS.
There would have been more "I love you's" If you or anyone you know has Lupus and would like to find out more about this
http://www.chronicfatigue.about.com/health/chronicfatigue/ --Ch
and more "I'm sorry's" possibly debilitating disease, call the Lupus Foundation of America, Southern Nevadasufferers an
den. Lisa writes and advocates on behalf of CFS/FMS
.....but mostly, given another shot Chapter‘s hotline at 566-1425.number of other publications. In education relief from this crippling
The Chapter offers support and search of through their
at life, I would seize every monthly meetings and their newsletter.
medications, battled for disability benefits, and struggled to find ne
minute.....look at it and really see http://www.fmaware.com/ -- National Fibromyalgia Awareness C
it ... live it ... and never give it back. ter. To receive a membership package containing extensive inform
Information Book and a subscription to the quarterly newsletter alo
~~ In honor of women's history month send $25.00 (U.S. funds) tax-deductible annual membership fee 24
and in memory of Erma Bombeck Is Your Environment Making
http://www.fmnetnews.com/ --Fibromyalgia Network has a webs
You Sick?
who lost her fight with cancer. materials on fibromyalgia syndrome (FMS) and chronic fatigue syn
Awareness Day
is a quarterly newsletter publication that provides patients and heal
Saturday,conditions.2001 essential resource for pati
FMS, CFS and related May 12, It's an
An annual subscription is only $25 or 45 for 2 years. Call 800 853
Box 31750, Tucson AZ 85751-1750
http://www.teleport.com/~nfra/ --The National Fibromyalgia Re
(FMS) activist organization in Salem, Oregon. Their mission statem
cure for fibromyalgia." NFRA has consistently built on this premise
Only The Chemical Avenger Knows…
By Angel De Fazio, B.Sc.,A.T.
President, National Toxic Encephalopathy Foundation
I recently had the pleasure to attend the opening for the new I finally had the pleasure of meeting face-to-face Mr. John
expansion of Desert Springs Hospital. It is well known that Wilson, the General Manager of Southwest Ambulance servic-
new construction is the primary contributor of Sick Building es and his partner. They are about to go on 911 calls and they
Syndrome and exacerbates our illness. I had a lot of trepida- are going to remind the Emergency Medical Technicians
tion walking into a newly constructed building knowing full (EMT‘s) of my protocols to be fragrance free. The county has
well, that this was not built green. I was amazed, no shocked, specific rules regarding glass on the trucks and unfortunately,
that the reception area was remarkably safe. I did not notice a they cannot have glass bottled water, only plastic. I did not
single trigger from that area. Now, the attendees were another realize that they are forbidden to dispense something as inno-
issue, but I was more concerned about the building as a whole. cuous as an aspirin, unless it is in relation to a heart attack
For a new building, it was noticeable in the admitting patient. As I had requested that they carry Alka-Seltzer Gold
area, but that area had not been subject to a full airing out. For to stop any reactions that they might encounter. They are ex-
a room that has been basically sealed, it was not something I changing linens with the hospitals and that could have pre-
would have expected, with the low amounts of Volatile Organ- sented a problem, but fortunately they carry burn patient blan-
ic Compound (VOC‘s.) I had the pleasure of receiving a tour kets. Also, I suggested that they use the sheets for burn pa-
from the Risk Manager, Mrs. Jolene Cotton. I have deal with tients as they are washed differently, from what I understand
risk managers and Jolene is truly a concerned healthcare pro- than regular sheets, they do not use chlorine bleach. We do
fessional. She is truly concerned with environmental issues not have to worry about toxic disinfectants, as they can use
that exacerbate us. I had mentioned that I was in the restroom 30% hydrogen peroxide, which dissociates into water and
and noticed that the soap was fragrant and she is going to look oxygen.
into having it changed. No other medical facility in this state John and his company are very concerned about transport-
would have approached the problem in this manner. Most ing chemically sensitive patients. I introduced John to Jolene
would have just suggested that we not use their facilities. and they both are committed to doing what it takes to make it
The outside areas are desert landscaping and therefore, no safe for not just this segment of the population, but others will
pesticides would be needed. The parking lot on Spencer I am benefit from their assistance.
assuming will be paved and that will create a temporary barrier During the actual dedication, one of the speakers said that
until that is finished. But there are still other entrances so, that they were looking to the future of healthcare and with their
should not hinder anyone trying to access this new medical agreement to try and protect this increasing segment of the
facility population, I believe that they will.
The elevator was still a little fresh, but that could be con- None of the considerations that we are being given from
tributed to the panels that they placed in there to absorb sound. Desert Springs would have been possible without the consid-
The rooms were surprisingly safe. The window treatments eration of Ms Karla Perez, the Chief Executive Officer. I had
were mini blinds. The guest chair was fabric versus leather the pleasure of dealing with Ms Perez when she was at Valley
(no formaldehyde off gassing); I could not really smell the Hospital a few years ago. Her attitude towards helping people
linoleum flooring. The shower curtain seemed to be fabric was apparent even then. When I approached her in her current
versus plastic/vinyl that decreased the amount of toxins in the position she listened to my concerns and forwarded our issues
room. Jolene was so understanding of my concern regarding to Jolene.
the bedding and linens that we went to a room and looked up I realize that many times you do not have the luxury of
the materials that they were constructed of. selecting a hospital, but when that option is available I highly
I could easily convert one of the new rooms to a safe room recommend Desert Springs for any in patient stay. Patients do
if they had the materials on hand. As most of the offending have the option once stabilized to be transported to another
chemicals were localized to the bedding and related material. facility and I think using Southwest Ambulance for transport to
Almost all of the rooms are private which is the greatest bene- Desert Springs is the right choice.
fit to the members of all our groups. Every time I comple- I will be promoting these businesses through my founda-
mented Jolene on the wonderful job that they did, her response tion, as I believe we have finally found guardians of our
was, we try, which they truly did. health. Also, I believe that these two health oriented business-
es will be setting the standard for Nevada.
I Say, Keep On Trucking
By Lori Blakeney
Awareness...there are so many things to
be aware of and appreciate in Life, the stars, the moon, the Since my darling son has brought me his computer, my life has
beauty of blooming flowers, the graceful and snow covered been uplifted. I still have a brain. What an amazing thing to
mountains, one's family and friends.... But I am also aware that find out about oneself!!!!.
I am not the young, active, joyous person I once was. Yes, I forget things, have very poor short-term memory,
Fibromyalgia, sleep Apnea, chronic fatigue syndrome and but still have a long term memory that allows me to remember
osteoarthritis has changed that. When I many wonderful things that have happened throughout my life.
wake up and have a pain and fatigue free day, I marvel at the So I am very grateful for that. Now the time has come to make
experience of it, thinking of all the years past that I took it for a decision, a big one, my roommate is moving out of our
granted. I am here in Vegas, basically alone, work full time at apartment and moving into a friends home, so I must decide
a casino which is a terrible whether to find a new roommate or move to another apartment.
environment to work in. I do not want to move!!!!!! The thought of it makes me
The stress, abuse and effort it takes just to get there and crazy.....so instead of worrying about it, I am sending out posi-
work 6 to 8 hours a night have become overwhelming. I mar- tive Vibes that my new roommate will be a good, honest, sta-
vel that I can still accomplish just staying on the job, pushing bile person. Say a Prayer for me please. I cannot afford to
myself to do what has to be done. I am proud of myself and live here alone.
give myself credit, after all, who Else will. I am very fortunate Well, tonight There was a beautiful sunset, right in the
to have a few wonderful, caring friends, a Loving son, but no- middle of winter, how great is that?? To all my fibro buddies I
body, I mean nobody, has any idea of the pain, discomfort and say, keep on trucking. Find one thing every day to look for-
fatigue that I go thru, except those with the same malady. ward to.
Love Lori Blakeney
REFLECTIONS FOR MAY
Copyright 2001 by Libby Rosenauer PhD
Just a little something to reflect on . . But if you focus on your family, your friends, the needs of
I've learned that no matter what happens, or how bad it others, your work and doing the very best you can, happiness
seems today, life does go on, and it will be better tomorrow. will find you.
I've learned that you can tell a lot about a person by the way I've learned that whenever I decide something with an open
he/she handles these three things: heart, I usually make the right decision.
1-A rainy day, I've learned that even when I have pains, I don't have to be
2-Lost luggage, one.
3-Tangled Christmas tree lights. I've learned that every day you should reach out and touch
someone. People love that human touch-holding hands, a
I've learned that regardless of your relationship with your warm hug, or just a friendly pat on the back.
parents, you'll miss them when they're gone from your life. I've learned that I still have a lot to learn.
I've learned that making a "living" is not the same thing as I've learned that you should pass this on to someone you care
making a "life." about, I just did. Sometimes they just need a little something
I've learned that life sometimes gives you a second chance. to make them smile.
I've learned that you shouldn't go through life with a catcher's Note: People will forget what you said, people will forget
mitt on what you did, but people will never forget how you made
both hands. You need to be able to throw something back. them feel......
I've learned that if you pursue happiness, it will elude you.
THANK YOU
By Lynn D. Smith
For our Educational Seminar on May 12th we wanted to provide lunch for about 125 attendees.
When I contacted Ian Campbell to ask if he would caterer a luncheon within our limited budget, Ian's re-
sponse was immediate. Ian not only agreed to host our luncheon but said that he would do it free of charge to
honor his mother, Julie Campbell who has Lupus.
This act of generosity and kindness put a lump in my throat.
Tobi Bellow put me in contact with Ian Campbell. Tobi is Program Manager of Project Dignity, a dedi-
cated multi faceted non-profit program designed to address the needs of the youth of the Las Vegas Metropolitan
My Personal Proclamation
area. Tobi‘s wealth of knowledge has been a wonderful contribution to our Lupus Chapter. So to you Tobi we also
By Jean
give a heartfelt thank you.
If hope and comfort on the that if we is how I
Dear Ones: It is people like Ian Campbell and Tobi Bellow that give us theyou were to call meto knowphone, thisreach outwould
someone will be there to help. Thank you both for your support!!!! with you. My name is Jean and FMS is part of me.
converse
Southern Nevada Lupus Chapter
Las Vegas Fibromyalgia/Chronic Fatigue Syndrome Support Group
We try to work as a team. I let it have its days and I am fortu- not offended, a point for him. I have to admit, I have been feel-
nate to have my days. ing a change in my back. It can go slightly longer with sitting
I have been married 32 years in June. My husband is a at this computer or vacuuming without cramping or spasms.
devoted and wonderful husband. You have not ever met me, I I, like most of you have tried almost everything. I hate
have not been a participate in the groups. Sometimes, God taking pills and have tried to keep them to a minimum. When
gives me wisdom and insight that I know comes from Him my doc hands me a handful of Rx's to fill. I use my own dis-
because there was no way I could have known the information cretion as to which I will take.
about to whom I am speaking to. So to be in a group setting Of course, I honestly tell him why. I am also trying to stay
and share how He gets me through all this mess the world is committed to juicing with additives as well as trying to clean
giving me or to share some spiritual insight, I am not sure how out my system of toxins. I am doing this all at a slow pace so
it would be received. Afraid of rejection? I guess that's me. my body can get adjusted. I have also tried new meds for sleep
I'm a person with a great sense of humor. I love to laugh hoping I can get into a natural and normal sleep rhythm. This
and love to make others laugh. I love people. I hate smoke. I 3:00 AM or 6:00 AM sleep time is crazy. It hasn't worked yet.
am very harsh about smokers. (I am a x-smoker, I have been It's 1:00 am right now.
told we are the worse.) Second hand smoke hurts my lungs. I I welcome phone calls and visits. I would love to start a
am very truthful and have been told to a fault. I would NEVER group just for women because I feel being a woman is awe-
deliberately hurt someone, but I have been told I have done it. some and we have so much to offer.
I am sorry and try to make up for it. God is teaching me To finalize my note to all my fellow FMS sufferers, I be-
how to be a better person. No one likes to be showed their bad lieve things are they way they are for a reason. We can make
character traits or habits but how am I going to improve? I good out of it or bad. We are the only ones that can make that
believe FMS has made me a much better person. I have choice. I am not saying all my days are good. Today was aw-
learned a lot about myself as well as others. I try not to dwell ful. All I can do is pray and ask God to show me what to do
too much on how much or where I hurt, but if someone is will- next.
ing to listen, I'll tell them. It feels good to have someone listen Believe me, I am not near perfect. I have gotten many
doesn't it? times to the point where I just want out of this world. A Chris-
I have recently started Chiropractic treatment. He's a gen- tian music artist has a song that I have taken as my own per-
tle man and knows FM. He is also a believer and says it's the sonal proclamation. ―Life Is Hard, But God Is Good!‖
only time he can put his hands on his patients and pray for With that, I say God Bless ya'll,
them. I am not a fan of Chiropractic treatment, but had reached Jean
a point where I was losing the battle. I told him this and he was
Your Support Group does make a difference.
Attend our Educational Workshop on Saturday, May 12, 2001 and see for yourself.
“Thank You” To The Members Who “Give”
Jo Ann Varner
Recently I received e-mail stating that both Sheryl and Lois have been ill and in desperate need of articles for the next newsletter.
From time to time I‘ll think of something, but never actually ―send‖ an article in. Now that my brain and fingers are operating simulta-
neously, I may end up with more than one!
The support group has always meant very much to me and frequently I‘ll feel that I‘m ―taking‖ more than ―giving‖ to it. Like al-
most everyone else, I read the newsletter thoroughly and benefit from it. Then there are the actual meetings, which I try to attend as
often as possible. Not only are the speakers interesting, but ―being there in person‖ makes me feel that I‘m not alone in fighting fibro.
It also helps me realize how ―mild‖ my case is. However, I‘m sure those members absent from meetings are probably really suffering
even more.
I feel fortunate that I am still able to work. When asked how I‘m doing. My response is usually that ―with medication, physical
therapy and limiting my activities, I am able to keep the pains tolerable‖. As many of us, when I ―look‖ normal, no stranger would
guess anything is wrong with me. The only exception is when I get up after having sat for an hour or so at a restaurant. Then I have to
hold on to the table and stand still until the old leg and feet muscles are ready to ready to allow me to walk. After a few steps, I‘m
normal again. However, the area I must concentrate on constantly is doing stretches for my neck and shoulder muscles.
In keeping tills article fairly short, I just want to say ―thank you‖ to the members who ―give‖ more to this support group than they
―take‖. Whether you‘re in the front lines or behind the scenes, you are appreciated.
Fibromyalgia, Yes, No, Maybe?
By Roberta Wisnosky
In the summer of 1992 I was diagnosed with Hashimoto‘s Thy- The web site which I read for thyroid news, the
roiditis, an autoimmune disease of the thyroid gland. In the fall of www.about.com thyroid site, told me that the New England Journal
1992 my primary care provider decided I also had Fibromyalgia. A of Medicine reported in Feb 1999 of a small study which showed
different primary care provide diagnosed me with Fibromyalgia in hypothyroid patients did better with both Cytomel and Synthroid.
1997. From the research I had done on both Fibromyalgia and Ha- My new primary care provider agreed to let me try their suggested
shimoto‘s I knew that a low thyroid condition can create very simi- doses of both medicines. Since that time muscle aches in my arms
lar muscle aches and pains as occurs in Fibromyalgia. I was taking and legs have disappeared. I do have painful feet from osteoarthritis
medicine for my low thyroid condition but I also knew from my in my feet.
research that many people with low thyroid felt better when they Due to that foot pain I also have trouble sleeping if I don‘t take
took two different medicines, a T3 medicine and a T4 medicine. a small dose of antidepressant before bedtime. Last May when I
I asked my doctor in 1997 whether she would prescribe Cyto- went to see a rheumatologist she did the tender point exam after I
mel, a T3 medicine, in addition to the Synthroid, a T4 medicine, told her I had been previously diagnosed with fibromyalgia. There
which I was taking. She replied that that was not the gold standard was no pain in any of the tender points. She said my fibromyalgia
method of treating thyroid disease. She thought that my Synthroid was in remission. So again I wonder do I really have fibromyalgia–
was sufficient. For that reason and some others in 1998 I decided to yes, no or maybe??
switch primary care providers.
What Works For Me
By Jacqulin Botosanu
I am new to this site and support group. However I am not new sleep that I can function very well. I understand that FMS for most
to FMS, I was diagnosed in 1985 and have lived in pain and illness people, that sleep is a very big problem. Ambien is not a cure but
that I can't explain. Since last July my Rheumy put me on Ambien has helped me function 95% better than I have ever before. This
for sleep, that has been my biggest battle was lack of sleep, if I can might be of some help to others as well. By taking Ambien I am
sleep I can handle most anything else. Ambien is not for most down to 1/2 of Ultram for pain twice a day with very little side ef-
people use as matter of fact you are not to take Ambien for more fects. I go to a chiropractor once a week for therapy. These are posi-
than 30 days in most cases. However in my case 1/2 of 10 mg of tive steps for me and fighting the awful illness. I don't know if you
Ambien a night sometimes a 1/3 of a dose has given me enough can use this in your article but maybe parts of this will be helpful.
My email address is botosanu@gateway.net
My Discovery
by Ann
I know many of us have allergies, and when I was 'down', I got 3. has a 10-year life span, and
behind on the housework. With 4 cats, yes 4, and last summer being 4. is cheap, about $21.00
so dry, I noticed the hose was more dusty than usual. I started hunt- The other is a set of 52 filters, that you put inside of the
ing around for something to cut down on the dust, and I discovered vents/registers, can be cut to fit and you replace every three months.
two items that may interest the group. They are not available locally, Cost about $20.00.
but I am working on that. I had to order mine, but I am going to see if Wal-Mart will car-
One, is a AC/furnace filter that: ry them. If not, since there is shipping and handling on each item
1. negatively and positively charges the dust in a three part sys- ordered, maybe they can be ordered in groups, so there is only one
tem shipping and handling charge. I will keep you posted on what I find
2. is reusable, rinse and replace out.
Review of Magazine Article on Fibromyalgia
By Judy Stebbins
An article in a recent issue of US magazine was brought to our They had trouble understanding her diagnosed fibromyalgia and she
attention. It was titled ―A.J. Langer‘s Life of Pleasure and Pain‖ – had to deal with anger, fear, confusion and helplessness. A.J. says
her sitcom, THREE SISTERS, is a hit, but fibromyalgia leaves her she found the meaning of life in Costa Rica. She learned to stop
chronically fatigued – by Oliver Jones. It included several photos of herself and really examine every choice she makes. She now eats
her that show her looking happy and healthy. As the article ex- what she wants and exercises when she enjoys it. She said that
plains, when you have fibromyalgia and do this kind of challenging learning to surf was better than any prescription medicine. A.J.
work, you need to know how to take care of yourself. Four years knows that she will keep the pain of fibromyalgia from getting the
ago, A.J. was in great pain and at a low point. Today she still has best of her with the support of friends and family and the knowledge
the pain, is chronically fatigued and often doesn‘t sleep for more and self-awareness she has gained.
than two hours in a row. She feels happier now doing what she This is a very uplifting article that puts fibromyalgia in the spot-
loves and is more aware of the exercise, relaxation and limits that light and gives us hope for our own successes in the future.
are needed to cope with fibromyalgia.
A turning point was when she went to Costa Rica after becom-
ing estranged from her family and breaking up with her boyfriend.
A Survival Kit For Living With FMS/CFS
IS YOUR ENVIRONMMENT
MAKING YOU
SICK?
THE LUPUS
FOUNDATION OF
SOUTHERN NEVADA
AND
OUR FAMILY THE FOOD WE EAT
ENVIRONMENT THE LAS VEGAS
FIBROMYALGIA/
CHRONIC FATIGUE
SYNDROME SUPPORT
GROUP
PRESENT THEIR
5th ANNUAL
EDUCATIONAL
THE AIR WE SEMINAR DOCTOR/PATIENT
RELATIONSHIPS
BREATHE
ON
SATURDAY, MAY 12
AT
SUNRISE HOSPITAL
AUDITORIUM
FROM
9:30 A.M. TO 4 P.M.
FOR MORE INFORMATION
WORK CALL THE PRODUCTS
ENVIRONMENT 566-1425 WE USE
I'm Just a Mother? Excuse Me???
A few months ago, when I was picking up the children at you do in your field?" Coolly, without any trace of fluster in
school, another mother I knew well rushed up to me. Emily my voice, I heard myself reply, "I have a continuing program
was fuming with indignation. of research (what mother doesn‘t) in the laboratory and in the
"Do you know what you and I are?" she demanded. Be- field (normally I would have said indoors and out). I'm work-
fore I could answer (and I didn‘t really have one handy) she ing for my Masters (the
blurted out the reason for her question. whole darned family) and already have four credits (all daugh-
It seemed she had just returned from renewing her driv- ters). Of course, the job is one of the most demanding in the
er's license at The County Clerk's office. Asked by the woman humanities (any mother care to disagree?) and I often work 14
recorder to state her occupation, Emily had hesitated, uncertain hours a day (24 is more like it). But the job is more challeng-
how to classify herself. ing than most run-of-the-mill careers and the rewards are in
"What I mean is," explained the recorder, "do you have a satisfaction rather than just money."
job, or are you just a.....?" "Of course I have a job," snapped There was an increasing note of respect in the clerk's
Emily. "I'm a mother." voice as she completed the form, stood up, and personally
"We don't list 'mother' as an occupation...'housewife' cov- ushered me to the door.
ers it," said the recorder emphatically. As I drove into our driveway, buoyed up by my glamorous
I forgot all about her story until one day I found myself in new career, I was greeted by my lab assistants - ages 13, 7, and
the same situation, this time at our own Town Hall. The Clerk 3. Upstairs I could hear our new experimental model (6
was obviously a career woman, poised, efficient, and pos- months) in the child-development program,
sessed of a high-sounding title like "Town registrar" or "Offi- testing out a new vocal pattern. I felt triumphant! I had scored
cial Interrogator" "And what is your occupation?" she probed. a beat on bureaucracy! And I had gone on the official records
What made me say it, I do not know. The words simply as someone more distinguished and indispensa-
popped out. "I'm a Research Associate in the field of Child ble to mankind than "just another mother."
Development and Human Relations." The clerk paused, ball- Motherhood...what a glorious career. Especial-
point pen frozen in midair, and looked up as though she had ly when there's a title on the door.
not heard right. I repeated the title slowly, emphasizing the Whether a stay at home Mom or a career
most significant words. Then I stared with wonder as my Mom, we should all carry this title.
pompous pronouncement was written in bold, black ink on the
official questionnaire.
"Might I ask," said the clerk with new interest, "just what
Thanks I Needed That
Procrastinator's Creed
1. I believe that if anything is worth doing, it would have been done already.
2. I shall never move quickly, except to avoid more work or find excuses.
3. I will never rush into a job without a lifetime of consideration.
4. I shall meet all of my deadlines directly in proportion to the amount of bodily injury I could expect to receive
from missing them.
5. I firmly believe that tomorrow holds the possibility for new technologies, astounding discoveries, and a reprieve
from my obligations.
6. I truly believe that all deadlines are unreasonable regardless of the amount of time given.
7. If at first I don't succeed, there is always next year.
8. I shall always decide not to decide, unless of course I decide to change my mind.
9. I shall always begin, start, initiate, take the first step, and/or write the first word, when I get around to it.
10. I will never put off tomorrow, what I can forget about forever.
Cfs Tips For All Occasions
1. If you have to vacuum the bed, it's time to change the sheets.
2. If you take the dog for a walk, make sure he brings you back.
3. Never mind about taking one day at a time. Just stick to one thing at a time.
4. Try to spend at least 45 minutes each morning doing one get-up.
5. Work at learning something new every day, like sitting up, for example...
6. Remember to breathe when napping. It's unnerving to wake up and see vultures staring at you.
7. Learn to understand your "body language":