Web hosting Custom Email SiteBuilder

It started because the mailing list  -lfibromyalgia@onelist.com contained many useful URLs and pieces of information that people wanted to access more easily.

It began with pieces put together by Shirl  and Fern and now includes information on many topics from group members..

Please feel free to add whatever information that you would like here.

.
 
 

Shirl's List	Fern's List FMS and Depression
Manufacturer's Free Medication Programs	Fibro Friendly Doctors
Random URLs and  Help	Shirl's ABC's
Protection and Advocacy Agencies	Children and Teens
Help with Social Security	Information Form for Members
Places to Publicise FMS	Medicare and Disability in Minnesota
Health Products and Supplements	Carol's Links about Relationships
Carole's Instructions for Backups	Article from Parade Magazine ..Patty
Sleep Disorders	Disability Links from Janice

---

INVITATION TO COPY AND FILL IN THIS FORM

Here is a blank form that has some questions that both new
 people to the list and also the rest of us may find helpful in
 sharing who we are with each other.  Anyone who would like
 to, may fill in whatever information they feel comfortable sharing.
 I have been saving information that has already been shared
 via a form similiar to this, so at some point we can put it in
 a "special" place in the archives, etc, and hopefully use it as
 a tool to learn from and about each other.

                             Name: E-mail Address: City, State:
                Birthday:
                Spouse & Children:
                Do you work?
                Type of Diagnosis:
                Medical Problems :
                How long have you lived with this illness?:
                Medications currently taking:
                Medications that did not help or made things worse:
                Current vitamins/supplements/herbals:
                Vitamins/supplements/herbals that did not help or made you worse:
                Other modalities that help: (ie. exercise, heat, cold, preventive
                measures,
                etc)
                Other modalities that made you feel worse:
                How has this diagnosis changed your life?:
                How have you chosen to handle this?:
                Has anything specific helped you?:
                Animals:
                Do you feel you have support from friends and family?
                Other comments:
 

                elaineR

BACK TO THE TOP

---

A.1. TAKE ACTION . . . GET   INVOLVED !!
1.  Did you quit aspartame (Equal, diet drinks/foods, etc)?   Then complete a VICTIM REPORT
FORM.          Go to:     http://www.dorway.com/reprtfrm.html

2. SIGN THE PETITION -- let your voice be  heard.  Please help show a strong supportive
 force by signing the petition.  It only takes a  moment.   (Louise):

3.  SUPPORT "R.E.S.C.I.N.D.":   Repeal  Existing Stereotypes about Chronic,  Immunological and Neurological Diseases.          (Patsy):

A.2.  TAKE ACTION  . . .   START WRITING !!

 1.  GET YOUR (U.S.) GOVERNMENT   OFFICIALS INVOLVED:  I recommended a  link to the list about 2.5 weeks ago -- but do not   remember what it was  ...  ...  if anyone knows  a link, please let me know.  ... ... ...  FOR  STARTERS:  FedWorld at   http://www.fedworld.gov

 2.  COMPLAINT LETTER GENERATOR --   for those of us in a fog but want to write an           attention-getting letter  (primarily geared towards complaining  about a person):

3.  WANT TO START A 'WEB' PROJECT   LIKE THE AID's BLANKET/QUILT -- see
their idea at:      http://www.illumin.co.uk/artaids/
Read the JAVA Script at the bottom of your browser's frame. Then click on  AIDS.

4.  SITE TO WRITE TO HEALTH CARE   PROFESSIONALS ?!? ?!?  If you know of a
resource, please let me know.
 

B.  SITES REF PAIN, CFS,   FIBRO, etc:   http://excite.netscape.com/directory/health/diseases_and_conditions/a_z/fibromyalgia/
 [Good composite site from Netscape w/ fibro information]
 

1.  TESTIMONY / IDEAS / RELIEF FOR   FIBRO: http://www.fms-help.com/fibro.htm

2.  SHERI's FIBRO ... Resources:  http://prairie.lakes.com/%7Eroseleaf/fibro/index.html

3.  SUPPORT GROUP (Message Index):     http://www.tidalweb.com/fms/fmsbbs/

4.  FMS LINKS:      http://www.geocities.com/HotSprings/Spa/1024/fmslinks.htm

5.  LEADING EDGE RESEARCH  [MetaPages]:   http://www.trufax.org/sitemap.html

6.  THE WALL, Posted Msgs:      http://fmpsc.org/wall/discussion.html

7.  PETITION TO CONGRESS:             http://members.aol/fibroworld/index.htm

8.  MISSION = TO OBTAIN A CURE:     http://www.co-cure.org/cocurering.htm

9.DEALING W/PAIN (personal perspective) http://geocities.com/SouthBeach/Inlet/7625/illness.htm

10. COMMON FIBRO-RELATED     ACRONYMS/ABBREVIATIONS:

11.  LINKS REGARDING ARTHRITIS:    http://www.netdoctor.com/links/arthritis.htm

12.  FOR FOOT CARE:      http://www.aofas.org/arthritis.html

13.  SUGGESTIONS FROM FERN, 4.8.99:
   http://www.hsc.missouri.edu/~fibrolfm-md.html
   http://www.myalgia.com/
   http://www.yelmtel.com/~jrleo/index.html
   http://www.tidalweb.com/fms/bigpict.shtml
   http://www.fibrom-l.org/fibromlhelp.htm
   http://www.fibromyalgia.com/

 C.  REFERRALS FOR   MEDICAL ASSISTANCE:  From   Tetrana
   http://prairie.lakes.com/~roseleaf/fibro/index.html]

  For a referral to a local support group and/or specialist, contact one of  these organizations:

                    Fibromyalgia Alliance of America,   Inc.  Fibromyalgia Network
                    PO Box    21990      PO Box 31750    Columbus, OH   43221-099
                   Tucson, Az. 85751-1750
                                                       (614) 457-4222
                    Phone      info  line: (520) 290-5508       (614) 457-2729
                    Fax          fax:    (520) 290-5550
 

D.  SUGAR & DIET - RELATED    HEALTH ALTERNATIVES   [from DORWAY.COM]
1.  ABOUT STEVIA:                       http://www.dorway.com/stevia.html
2.  RESOURCE LIST:  Stevia & Other  Sweeteners: http://www.holisticmed.com/sweet/
3.  SWEETENER MADE FROM KIWI   FRUIT:   http://www.sweetbalance.com
4.  INFO ON OTHER SWEETENERS:      http://www.sweetbalance.com/data.htm
5.  Sites from Leading Edge Research:                      http://www.trufax.org/

ASPARTAME:          http://www.trufax.org/menu/chem.html#aspartame
 ?? ?? REF ASPARTAME:               http://www.trufax.org/research/119.html.
 FOOD/SUGAR/ASPARTAME:       http://www.trufax.org/menu/food.html

6.  PHYSICIANS COMMITTEE FOR   RESPONSIBLE MEDICINE:    http://www.pcrm.org/

7.  ALTERNATIVE HEALTH-RELATED   ISSUES:  http://www.healthy.net

8.  EMOTIONAL HEALTH:    http://www.rebt.org/index.html

9.  DORWAY -- About aspartame/Equal:     http://www.awod.com/
     DORWAY -- About aspartame/Equal:     http://www.dorway.com/
 
 

1.  Carol,   3.7.99
a. Fiibromyalgia & Chronic  Myofascial Pain Syndrome  A Survival Manual
    Devin Starlanyl, M.D.      Mary Ellen Copeland, M.S.,    M.A.
 b. Guaifenesin Therapy (Humibid)
 c.  3.29.99 -- "Let's Get Well", by    Adelle Davis (a nutritionist from the 60's)

2.  Terry C, 3.10.99:  Serzone medication --   really puts you into the REM sleep.

3.  Tina, 3.8.99  --  Noni juice

 4.  Margo,
  a.  3.12.99 --  "Simplify Your Christmas"  by Elaine St. James  --  Book brings  sanity  back  into family events (applicable to  Thanksgiving, Passover, Easter, etc.
   b.  3.28.99 -- suggested by her chiro:  big  huge glass of TONIC water before  bed  for a big   charge of calcium.

5.  Sharon, 3.15.99 -- ResTonic Mastress  (Queen size = $150), along w/ egg carton   mattress cover.

6.  Tetrana, 4.9.99 -- Mindful Movements by  Thich Nhat Hanh

7.  Several members have asserted that hot   tubs, aqua exercies in a warm pool (87 to  93  degrees), saunas, and whirlpools have been of   tremendous help.  A source for  portable/inflatable (?) hot tubs:   http://www.intelihealth.com

8.  Marybeth, 4.10.99 -- Co enzyme Q 10supplement; and Reversing Fibromyalgia by
     Dr Joe M Elrod

 9.  SHiRL,    4.3.99 --
 Any books by Dr Wayne Dwyer   (PhD) and/or Dr Depak Chopra (M.D.);
 Meditation; relaxation  and,  a hobby one can get  lost in.

                                                ~   ~ ~     ~ ~     ~ ~     ~ ~     ~ ~   ~ ~  ~
                                                   SHiRL WRENN, Director / Advocate
                                                              ~  DETAiLS >> FYi  ~
                                            Information Research / Legal Advocate / Tutoring
                                                                             .
                                                              sfw2details@vcu.org
                                                              Richmond  VA   USA

MEDIA:                      http://listserv.american.edu/cfids/cfids-l.media
GOVERNMENT:      http://listserv.american.edu/cfids/cfids-l.govt
 PATIENT GROUPS:  http://listserv.american.edu/cfids/cfids-l.orgs

                Suggested starting points -
                Fibro Awareness Page        http://www2.whidbey.net/FM/
                FOX NEWS:  http://www.foxnews.com/
                LIFETIME (USA Television network station for women):
                 http://www.lifetimetv.com/
             DISCOVERY/LEARNING CHANNELs:  http://www.discovery.com/
 
 

One of the most important things you can do to help yourself is to understand Fibromyalgia better. The more you know, the more you are able to explain to others and the more you can put your own mind at ease. And it doesn't hurt to know about your illness when going to the doctor.. you will find for the most part, most fms patients know more about their illness then their doctors do. We can only hope that in time this will change,and Fibromyalgia will become more known among the medical community.

The above was an excerpt from my FMS newsletter and I thought it was a very good comment.

1. Sensitivity to environment
a. noise      b. humidity      c. flashing lights   d. odors      e. photophobia (bright lights)
f. temperature (heat or cold)
2. Debilitating fatigue
3. Headaches
     a. tension
     b. migrains
4. Paresthesia (numbness/tingle)
5. Sore throat
6. Swollen/tender/lymph nodes
7. Muscle aches/spasms
8. Joint pain and stiffness
9. Sleep disorders
10. Weight gain/loss
11. Night sweats
12. Chills
13. Lack of endurance
14. Chest pains
15. Balance problems (vertigo/dizziness)
16. Symptoms that wax and wane
17. Irritable bowell syndrome (diarrhea/constipation or both)
18. Sensitivity to sunlight (rash)
19. Alcohol intolerance
20. Bleeding gums/mouth sores
21. Swelling extremities,face and tongue
22. Multiple allergies
23. Prostrate pain
24. Butterfly facial rash
25. Irritable bladder (frequent/feeling of fullness)
26. Hung over feeling (despite sufficient sleep)
27. Frequent infections (sinus,respiratory,urinary or yeast)
28. Myocalonus ( restless leg syndrome)
29. Intolerance to medications
30. Skeletal pain (anterior chest, cervical,thoracic,and low back)
31. Blurred and visual field abnormalities
32. Morning stiffness
33. Reynauds Syndrome
34. Muscle twitch/spasm/weakness
35. Tendor points (18 in all)
36. Sjogrens syndrome
a. Sicca syndrome (dry mouth,skin,eyes and mucous membranes (nose,throat,larnyx, bronchi,vulva and vagina
b. generalized collagen-vascular disease   1. pericarditis    2. sensory neurropathy   3. joint inflamation
37. Fibrocystic breast disease
38. Carpal tunnel syndrome
39. Shortness of breath
40. Thyroid disease (hypo and hyper)
41. Digestive disturbances
42. Premenstrual syndrome
43. Feeling of swollen extremities
44. TMJ
45. Coordination problems        a. clumsiness          b. dropping things       c. stumbling
46. Mitral valve prolapse
47. Skin/hair/nail disorders
48. Exercise and stress intolerance
49. Bursitis and tendinitis
50. Oxygen deficit after physical activity
51. Post-extertional pain
52. Pain on all four quadrants
53. Keratitis Sicca; Dry eyes ( dryness,burning,irritation and photophobia)

COGNITIVE AND EMOTIONAL PROBLEMS
1. Disorientation (getting lost easily)
2. Inability to focus attention (concentration)
3. Difficulty pronouncing/finding words
4. Inability to calculate simple math problems  5. Short term memory loss
6. Phobias and anxiety
7. Mood swings
8. Nightmares
9. Panic attacks
10. Easily confused
11. Memory blocks
12. Word mix-ups (when talking or writing)
13. Irritability
14. Depression
         a. low self esteem
         b. feeling of helplessness
         c. thoughts of suicide
         d. poor appetite
         e. over eating/under eating
         f. frequent crying spells.

This by no means suggests that you would have ALL of these symptoms at any given time. The symptom could be associated with fibromyalgia or can stand alone as their own or with another disease. Should you have any questions about any of these symptoms talk it over with your physician.
This list was supplied at the Spokane Fms conference. It was supplied by the Inland Northwest Fibromyalgia Association. ( BHTitan@aol.com )
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Three basic feelings are usually expressed by  depressed patients:

                 1) Physical inactivity and lack of desire to  socialize
                 2) Feelings of worthlessness or loss of self-esteem
                 3) Thoughts of self-injury and/or suicide

                 Symptoms may include:

                 Changes in appetite
                 Difficulty sleeping or sleeping too much
                 Inability to concentrate in usual activities
                 Isolating oneself/withdrawal
                 Lack of desire or motivation to participate in usual  activities
                 Inability to make decisions
                 Disinterest in daily hygiene
                 Crying easily or for no apparent reason
                 Changes in personality such as becoming more demanding or angry
                 Always being "happy" and pretending everything is  okay
                 Anxiety
                 Loss of interest in sex

Chronic Pain Scale

                Pain Level 10
                Pain is intolerable and totally disabling.  The pain interferes with  any attempt to function.
                Physical activity is halted.  I cannot sleep with this kind of pain.
                Pain medicine only takes the  edge off of the pain. This pain occurs during severe flare-ups.
                How I feel: I cannot concentrate.  The only thing I can think about is   the   pain.  I feel
                depressed   and have no hope.

                What causes a "10": severe changes in the weather, doing too much the  day  before,
                several days  of unrelenting muscle pain.

                Pain Level 8
                Pain is severe and difficult to tolerate.  The pain limits physical  activities to only those
                required  such as preparing a meal or performing daily hygiene.  Sleep is  disrupted
               with this level of pain.
                Pain medicine is still only partially effective in decreasing the pain.  I   have this level of pain
                almost every day by late afternoon or early evening.

                How I feel:  I have great difficulty concentrating on any activity.  It   takes great effort to
                care for  my children or even have a conversation.

                What causes an "8": damp, cold weather, exposure to loud, repetitive   noises,
                standing or sitting  in one position too long.

                Pain Level 6
                Pain is distressing and difficult to ignore for more than 30 minutes.
                It is  necessary to stop and   change position or take a break from activities.  Sleep is
                somewhat  better  with this level of pain  but I am awakened two or three times a
                night  with pain. I experience a  level 6 a majority of the  time.  This is my normal condition.

                How I feel:  I feel fatigued after short periods of activity.  I get easily  frustrated and
                become   irritable and anxious.

                What causes a "6":  Daily chores, riding in a car for more than 20  minutes,
                and any prolonged  activity.

                Pain Level 4
                Pain is annoying and distracting.  Sleep is fairly good at this level   with
                the aid of a sleeping pill.

                How I feel:  I feel irritated and impatient.

                What causes a "4":  I never have less pain than a level four even after
                taking pain medication.
 

                Pain Level 2

                Pain is a very minor annoyance.  I don't remember the last time my pain
                was   less than a 4.

                How I feel:  I feel very frustrated and depressed that for the past six    years I have not had
               a single  day without pain.

                What causes a "2":  I wish I knew how to achieve a level 2!

                NO PAIN - It has been six or more years since I can say I have been  free of  pain.
 

                I have a pain level of six 50% of the time.  I have to take breaks from
                any  activity after 30  minutes.  If I am required to be outside of the home for several hours
                for therapy or a doctor's   appointment, my pain level increases to a level 8 and sometimes
                even a   level  10.  I experience a   level 8 approximately 4 days a week.  I experience a
                level 10    approximately  3 or 4 times a   month.

                Pain medication only takes the edge off the pain when it is at a level  8 or  10.  When my
                pain is a  level 6, pain medication will bring the pain down to a level 4 where I  can
                function.
                From Fern

Addicts take narcotics to escape from life, chronic pain patients take them   to participate in life!!!

ARTICLE in PARADE MAGAZINE distributed NATIONALLY as Sunday   newspaper insert.
 Dated July 18, 1999      Page 16

Fibromyalgia -- incessant muscle pain throughout the body --    afflicts 6 million Americans.
It's cause is not known, and there is no cure at present, but there are various ways to obtain relief.

IF YOU'VE HAD MOST OF THESE SYMPTOMS FOR AT LEAST 90 DAYS,
YOU MAY SUFFER FROM FIBROMYALGIA
 **  Deep, aching pain in any part of the body -- the neck,   between the shoulder blades, hips, knees.
**  You don't sleep well and are up several times in the    night for no reason.
**   You don't feel rested in the morning and are very tired  throughout the day for no apparent reason.
**  Your throat tends to be sore.
**  You have attacks of diarrhea or constipation, despite a   normal bowel examination.
**  Bright light, odors and loud sounds bother you.
**  You don't tolerate heat, cold or changes in the weather well.
**  Your skin has a mottled look.

**  Moist heat. Try hot packs, relaxing warm baths, heating  pads or whirlpool baths in a physiotherapy clinic.
**  Transcutaneous electrical nerve stimulation.  Many of my patients are helped by these little devices, which are worn  under the clothes and stimulate nerves to relieve pain.
**  Gentle massage is beneficial.
** Relaxation.  I encourage my fibromyalgia patients to try relaxation exercises, such as those in Dr. Herber Benson's THE RELAXATION RESPONSE (Avon),  Biofeedback, Tai Chi and yoga also relieve stress.
**  Acupuncture or acupressure ease symptoms too.
**  Aerobic-type exercises.  Also stretch the muscles that hurt.

Fibromyalgia is a chronic, disabling condition that causes aching or burning pain in muscles throughout the body.  It strikes both sexes at any time in life, but mostly women between 20 and 40.  Physical examination reveals no apparent cause for the pain:  There is no history of injury,   no fever, and the routine physical exam is normal.  Yet  those afflicted feel sick and miserable.  Unlike arthritis,
 in which joint pain is aggravated by movement, the muscle symptoms of fibromyalgia are always present, even at rest. While patients often can hold jobs, they do so in almost constant discomfort.
In addition to their pain, individuals with fibromyalgia suffer from constant fatigue.  They tend to
wake repeatedly during the night, and they awaken  tired in the morning.  When tested in a sleep clinic, they show objective evidence of sleep disturbance.  They're also apt  to be depressed, and many suffer from a "nervous stomach."  Other symptoms include sore throat; diarrhea or constipation; sensitivity to changes in temperature, bright light, odors and loud sounds; and mottled skin.
Because fibromyalgia often is not diagnosed, patients go from doctor to doctor and usually are told that the  problem is "all in your head."
Despite the fact that there is no specific test for fibromyalgia, however, the disorder has been defined by the American College of Rheumatology, and it was accepted as ad isease entity by the international medical community in 1993.  So, fibromyalgia is not "all in your head" --- and  that's official!  There is no specific inheritance pattern ,but if you suffer from it, chances are that a blood relative has it too.

Fibromyalgia is estimated to affect about 6 million Americans, or 2% of the population.  These patients all have "trigger points," which are little knots that form in the muscles.  They can occur anywhere but generally are in the same place on both sides of the body.  These trigger points aren't just tender to the touch, they really hurt.

The cause of this disorder is unknown, and patients usually are not aware of what triggered their illness, although some report that its onset followed a stressful event.  Blood tests often are normal but may reveal a deficiency of serotonin, a chemical that transmits nerve messages in the brain and whose levels also are lower in depressed individuals.

The most effective treatment for this disorder is  regular exercise.  I refer my patients to physiotherapists to help set up exercise regimen of aerobic-type exercise, such as walking and swimming, as well as stretching exercises that involve areas of the body that hurt most.

Several medications can help relieve the symptoms.  Among the most widely used at this time is amitriptyline (Elavil) which prolongs deep sleep and -- because it is also an antidepressant -- raises the patient's deficient serotonin levels.  Similar drugs, including Flexeril, Tofranil and Desyrel, also are effective.  Some antidepressants, such as Prozac, also raise the level of  serotonin, but they can interfere with sleep.  I often  prescribe Elavil at night and Prozac in the morning  Sleeping medications, such as Ambien and Xanax, also may work.

Some doctors prefer nonsteroidal anti-inflammatory drugs, including ibuprofen, the newer Cox-2 inhibitors (such as Celebrex), tramadol and other pain killers.

Remember that the depression which accompanies fibromyalgia is the result of the problem, not the cause.   Although it usually lasts a lifetime, many of the measures  described here will permit you to lead a nearly normal  life.

Page 15 of the PARADE MAGAZINE has an advertisement with the  giant title:

She has had Fibro for 30 years and she believes in treating  the whole person.
Massage, Acupuncture, Pain medication and Relaxation  techniques also Pressure Point therapy.
From Eva

Indigent Prescription Programs

How to Apply to Free Prescription Drug Programs

Prescription Drug Patient Assistance Programs

Accessing Free Medication - The Patient's Advocate

The Medicine Program Free Prescription Medicine

Pharmacy Programs - Phone Numbers

The Good Deeds Foundation

Medication Manufacturers' Indigent Drug Programs

How to Apply  to Free Prescription Drug Programs

Prescription  Drug  Patient Assistance Programs

The Medicine Program

Hope some of these will be helpful to those of you who need assistance.
Don't be afraid, shy, or feel ashamed to ask for assistance.  YOU did not put yourself in this position; your illness did.  You have earned this.  Go for it!!

Minnesota Senior Federation
                Seven County Region
                47 North Park Street
                Mora, MN 55051
                Phone: (320)679-4700

                First don't let the name throw you off, because I discovered, after I
                was forced to take medicare, that as long as you are disabled and on
                medicare, regardless of age, you can become a member.
                Membership is $10.00 a year, and this is what you get for your $10.
                The program is based on an agreement with doctors, that they the
                doctors, agree to accept Medicare payment as full payment, which means,
                go as often as need, because that 20% you always had to pay, is no
                longer there.

Fibro Frog Support List   for all ages but with an emphasis on teens.

Chronic Pain, CFS, FMS, Filing for Disability and other Medical Resources   From Elaine R
Stress Management  From Fran
Fibro Web Ring   From Leslie
This is a web  site for   members of a fibro chat room http://members.tripod.com/~masterdunc/fibrohome.html   from Leslie
This site provides info for  different health care providers (doctors, dentists, opticians, PT's,
 surgeons). It is a very informative site.    http://www.sover.net/~devstar/sheets.htm    From Leslie
The  Internets Only LIVE Personal/Professional Medical Web  From  Carol
Moira's Canberra FMS Site.... MUST see   From Fran
Psycho Babble... Questions answered by a doctor   From Fran
The Oregon Fibromyalgia Page  From Fran
Dr. Hansen's page   From Leslie
MYCOPLASMA    The Institute for Molecular medicine.    Fran
MYCOPLASMA The Roadback Foundation           from Fran
MYCOPLASMA   Go to this site and type in the word mycoplasma or  mycoplasma fibromyalgia http://www.compkarori.com/arthritis/piosa.htm   From Fran
Mycoplasma     http://gulfwarvets.com/mycoplas.htm   From Marybeth
Mycoplasma  http://www.immunesupport.com/bulletins/articles/062599bul2.htm From Marybeth
Health Science Centre    From Carol
American Medical Association   From Carol
Health information from the Mayo Clinic.  Includes information about  illnesses, diseases, exercise, nutrition, and medications, a glossary  of medical terms, and medical news.
On-line medical dictionary:              Shirl
9th Circuit Court of Appeals Fibromyalgia Decision      From Sharon H
20 Ways to Cope with FMS     From Elaine R
Free Internet connections      http://www.freei.net/          http://www.netzero.net/   From Carole
Internet Call Manager for those with  one phone line   Elaine B
Medscape Primary Care..medical questions and research      Patty
Alphabetical Disease Listing      From Elaine R
Job information from IHA        Shirl
Web MD
Internet mental Health Medications    From Kathy
Guide for Relatives and Companions   From Tonya
In the LS&S catalog  you can get the Pill-Alert  for  $9.95.  It is a pill container that can be set for different times to  remind you to take pills that can be stored in the container in  separate
compartments.  Their number is 1800-467-4789   From Kathy
Lotronex Appears Promising As Treatment For IBS     From Elaine B
Abundant Health Products   For information about Gaba    From Fern
Dicky's  page about fibromyalgia   an excellent personal view with practical suggestions.

Sleepnet.com
The Dream Emporium
The Sleep Medicine Home Page
Sleep Paralysis
Sleep Medicine Associates
Northside Hospital Sleep Medicine Institute

ABCs © 12.24.98 -- Revised May 99
REALiZE the REALiTY of REALiZM
ABC's written & copyrighted by SHiRL -
PLEASE -- printing, copying, or quoting with out giving credit to the author is not authorized.
 
 

Social Security Memo      From Lori B
Guide For Social Security   Elaine R
Social Security Online       From Shirl
Active Living Alliance for Canadians with a Disability     From Shirl
For someone still in the military and has been diagnosed w/ a disabling  disability       From Shirl
Have you tried to apply for Section 8, of HUD  (Housing & Urban Development)
1800-669-9777    From Madeline
Sample claimant (patient) statement in support of application for  disability
 http://www.cfids-me.org/socsec.html#psych    From Shirl
Supportive info on applying for SSD        Shirl
Social Security Disability Frequently Asked Questions (list of 50+ questions)       Shirl
Guide for Health Care Professionals / Sample questionnaire for MD to  complete
http://members.aol.com/pbcers/rfcq.htm
http://www2.rpa.net/~lrandall/ssdi_cfs.html         From Shirl
A lay person's "Steps to Obtaining SSDI"   http://www.jcn1.com/pedersen/FMS/ssdi.htm
An attorney's guideline for applying for disability for those dx'd w/ fibromyalgia:
http://www.fmagw.org/disability.html#dis
http://www2.rpa.net/~lrandall/ssdi_fms.html    From Shirl
Info regarding Worker's comp
Great info on how to approach the disability medical exam (SS will have  their own  md examine you)
Severe, Disability Law Information         From Shirl, David

From:   Dean A. Choate
            Disability Rights Advocate
            Stevens Point, WI  54481 USA
            dch4806@g2a.net
 

              ALABAMA
              Katie Flora
              Alabama Disabilities Advocacy Program
              POB 870395
              Tuscaloosa, AL  35487-0395
              (205) 348-4928
              (205) 348-3909 (Fax)

               ALASKA
               Cynthia Berger
               Disability Law Center of Alaska
               615 E. 82nd, Suite 101
               Anchorage, AK  99518
               (907) 344-1002
               (907) 349-1002 (Fax)

                 AMERICAN SAMOA
                 M. Thompson
                 American Samoa P&A
                 Box 3937
                 Pago, Pago  96799
                 (011-684) 633-2441
                 (011-684) 633-7286 (Fax)

               ARIZONA
               Ann Meyer
               Arizona Center for Law in the Public Interest
               3131 North Country Club
               Tucson, AZ  85716
               (602) 327-9547
               (520) 323-0642 (Fax)

                ARKANSAS
                Jan Baker
                Advocacy Services, Inc.
                1100 N. University, Suite 201
                Little Rock, AR  72207
                 (501) 296-1775
                (501) 296-1779 (Fax)
                HN5322@handsnet.org

               CALIFORNIA
               Tymour Ravindi
               Protection and Advocacy, Inc.
               100 Howe Ave., Suite 185N
                Sacramento, CA  95835
                (916) 488-9955
                (916) 488-9960 (Fax)
                E-MAIL: MikeK@Sacramento.pai-ca.com

                 COLORADO
                 Kimberly Erickson
                 The Legal Center
                 455 Sherman Street, Suite 130
                 Denver, CO  80203
                (303) 722-0300
                (303) 722-0720 (Fax)

                 CONNECTICUT
                 Gretchen Kunff
                 Office of P&A for Persons with Disabilities
                 60B Weston Street
                 Hartford, CT  06120-1551
                 (203) 297-4300
                 (203) 566-8714 (Fax)
                 E-MAIL:  HN2571@handsnet.org

                 DELAWARE
                 Sue Weimer
                 Disabilities Law Program
                 913 Washington Street
                 Wilmington, DE  19801
                 (302) 575-0660
                 (302) 575-0840 (Fax)
 

                FLORIDA
                Gary Blumenthal, Executive Director
                Advocacy Center for Persons with Disabilities, Inc.*
                2671 Executive Center Circle W., Suite 100
                Tallahassee, FL 32301-5092
                (850) 488-9071
                (850) 488-8640 (Fax)
                (850) 342-0823 (Voice)
                (850) 346-4127 (TDD Only)
 

                GEORGIA
                 Naomi Isipora Walker
                 Georgia Advocacy Office
                 999 Peachtree Street, #870
                 Atlanta, GA  30309
                (404) 885-1234
                 (404) 607-8286 (Fax)

                GUAM
                Rodney Priest
                The Advocacy Office
                P.O. 8830
                Tamuning, Guam  96931
                (011-671) 472-8985
                (011-671) 472-8989 (Fax)
                HN5986@handsnet.org

                 HAWAII
                John Manion
                 P &A of Hawaii
                 1580 Makaloa Street, #1060
                Honolulu, HI  96814
                 (808) 949-2922
                (808) 949-2928 (Fax)
                E-MAIL:  HN4981@handsnet.org

                IDAHO
               Mary Jo Butler
               Co-Ad Inc.
               4477 Emerald, Suite B-100
               Boise, ID  83706
               (208) 336-5353
               (208) 336-5396 (Fax)
               E-MAIL:  HN5880@handsnet.org

                 ILLINOIS
                 Zena Naiditch
                 Equipment for Equality
                 11 East Adams, Suite 1200
                 Chicago, IL  60603-6303
                 (312) 341-0022
                 (312) 341-0295 (Fax)

                INDIANA
                 Gary Ritcher
                 Indiana Advocacy Services
                 850 N. Meridian St. #2-C
                 Indianapolis, IN  46204
                 (317) 232-1150
                 (317) 232-8077 (Fax)

                 IOWA
                 Joan Swanson
                 Iowa P&A
                 3015 Merle Hay Road, Suite 6
                 Des Moines, IA  50310
                 AT Program Coordinator
                 (515) 278-2502
                 (515) 278-0539 (Fax)
                 E-MAIL:  HN5317@handsnet.org

                 KANSAS
                 Sherry Diel
                 Kansas P&A Services, Inc.
                 2601 Anderson Avenue, #200
                 Manhattan, KS  66502
                 (913) 776-1541
                 (913) 776-5783 (Fax)

                 KENTUCKY
                 Bill Morrison
                 Protection & Advocacy
                 100 Fair Oaks Lane, Third Floor
                 Frankfort, KY  40601
                 (502) 564-2967
                 (502) 564-7890 (Fax)
                 E-MAIL: bmorriso@advocate.pa.state.ky.us

                 LOUISIANA
                 Scott Kirkland
                 ACED
                 8281 Goodwood Blvd. #D-1
                 Baton Rouge, LA  70806
                 (504) 925-8884
                 (504) 925-9625 (Fax)

                 MAINE
                 William Furber
                 Maine Advocacy Services
                 POB 2007 (32 Winthrop Street)
                 Augusta, ME  04338-2007
                (207) 626-2774
                (207) 621-1419 (Fax)

                 MARYLAND
                 Leslie Margolis
                 MD Disability Law Center
                 2510 St. Paul Street
                 Baltimore, MD  21218
                 (410) 235-4700
                 (410) 889-8576 (Fax)

                MARIANA ISLANDS
                Lydia Santos
                P&A Systems, Northern Mariana Islands
                P.O. Box 3529 C. K.
                Saipan, MP 96950
                011-(670) 235-7274
                011-(670) 235-7275 (Fax)

               MICHIGAN
                Bill Fleener
                Michigan P&A Service
                106 West Allegan, #210
                Lansing, MI  48933-1706
               (517) 487-1755
                (517) 487-0827 (Fax)

                MASSACHUSETTS
                Pat Freedman
                Disability Law Center
                11 Beacon Street #925
               Boston, MA  02108
               (617) 723-8455
               (617) 723-9125 (Fax)
               E-MAIL:  HN0473@handsnet.org

                 MINNESOTA
                 Steve Elliott
                 MN Disability Law Center
                 430 1st Ave., N., #300
                 Minneapolis, MN  55401-1780
                 (612) 334-5785 X214
                 (612) 334-5755 (Fax)
                 E-MAIL:  HN5418@handsnet.org

                 MISSOURI
                Keith Halcomb
                Missouri P&A Services
                925 South Country Club Drive, Unit B-1
                Jefferson City, MO  65109
                (314) 893-3333 X26
                (314) 893-4231 (Fax)

                 MISSISSIPPI
                 Jack Bach
                 Mississippi P&A System for DD, Inc.
                 5330 Executive Place, Suite A
                 Jackson, MS  39206
                 (601) 981-8207
                 (601) 981-8313 (Fax)

                 MONTANA
                 Ed Myers
                 MAP- DLC
                 415 North Higgins #2
                 Missoula, MT  59802
                 (406) 549-8464
                 (406) 543-3417 (Fax)

                 NEBRASKA
                 Tanya Diaz
                 Nebraska Advocacy Services
                 522 Lincoln Center Building
                 215 Centennial Mall South
                 Lincoln, NE  68508
                 (402) 474-3183
                 (402) 474-3274 (Fax)

                NATIVE AMERICAN POPULATIONS
                 Therese Yanan
                 People's Legal Services
                 P.O. Box 392
                 Shiprock, NM 87410
                 Executive Director
                 (505) 368-3216
                 (505) 368-3220 (Fax)

                 NEVADA
              Jill Smith
                NV Disability Advocacy and Law Center
                1135 Terminal Way #105
                Reno, NV  89502
                (702) 486-7600
                (702) 486-7758 (Fax)

                 NEW HAMPSHIRE
                 Donna D. Woodfin
                 Disabilities Rights Center
                 P.O. Box 3660
                 Concord, NH  03302-3660
                 (603) 228-0432
                 (603) 225-2077 (Fax)
                 E-MAIL:  HN6217@handsnet.org

                NEW JERSEY
                Nancy Faccone
                New Jersey P&A
                210 So. Broad St. 3rd Floor
                Trenton, NJ  08608
                (609) 292-9742
                (609) 777-0187 (Fax)
                E-MAIL:  HN6222@handsnet.org

                 NEW MEXICO
                 Greg Trapp
                 Protection & Advocacy System, Inc.
                 1720 Louisiana Blvd., NE #204
                 Albuquerque, NM  87110
                 (505) 256-3100
                 (505) 256-3184 (Fax)
                 E-MAIL:  HN5412@handsnet.org

                 NEW YORK
                 James Sheldon
                 Neighborhood Legal Services
                 Ellicott Square Bldg., Room 495  295 Main St.
                 Buffalo, NY  14203
                 (716) 847-0650
                 (716) 847-0227 (Fax)
                 E-MAIL:  HN0627@handsnet.org

                 NORTH CAROLINA
                 Barbara Jackson
                 Governor's  Advocacy Council for Persons w/Disabilities
                 2113 Cameron St. #218
                 Raleigh, NC  27605-1344
                 (919) 733-9250
                 (919) 733-9173 (Fax)

                 NORTH DAKOTA
                 Mark Douglas
                 North Dakota P&A
                 Jamestown Mall Ste 218
                 Jamestown, ND  58401
                 (701) 328-2950
                 (701) 253-3295 (Fax)

                 OKLAHOMA
                 Moira Robinson
                 Oklahoma Disability Law Center
                 4150 South 100th East Ave.
                 Cherokee Blvd., Suite 210
                 Tulsa, OK  74146
                 (918) 664-5883
                 (918) 622-4679 (Fax)

                 OREGON
                 Glennis Gold
                 Oregon Advocacy Center
                 620 SW Fifth Ave., 5th Floor
                 Portland, OR  97204
                 (503) 243-2081
                 (503) 243-1738 (Fax)

                 OHIO
                 Carolyn Knight/Tim Tobin
                 Ohio Legal Rights Service
                 8 East Long St., 6th Floor
                 Columbus, OH  43215
                 (614) 466-7264
                 (614) 644-1888 (Fax)

                 PENNSYLVANIA
                 Lynda Blackway
                 PA P&A, Inc.
                 116 Pine Street, Suite 102
                 Harrisburg, PA  17101
                (717) 236-8110
                 (717) 236-0192 (Fax)
                 E-MAIL:  HN6067@handsnet.org

                 PUERTO RICO
                 Virgilio Torres
                 Office of Ombudsman for Persons w/Disabilities
                 P.O. Box 4234
                 San Juan, PR  00902-4234
                 (809) 725-3606
                 (809) 721-2455 (Fax)

                 RHODE ISLAND
                 Jim Engstrand
                 RI P&A System, Inc.
                 151 Broadway, Third Floor
                 Providence, RI  02903-3052
                 (401) 831-3150
                 (401) 274-5568 (Fax)

                 SOUTH CAROLINA
                 Caroline Todd
                 SC P&A System for the Handicapped, Inc.
                 3710 Landmark Drive, Suite 208
                 Columbia, SC  29204
                 (803) 782-0639
                 (803) 790-1946 (Fax)
                 E-MAIL:  HN5319@handsnet.org

                 SOUTH DAKOTA
                 Robert Keanard/Lynn Vialenti
                 SD Advocacy Services
                 221 S. Central
                 Pierre, SD  57501
                 Executive Director/AT
                 (605) 224-8294
                 (605) 224-5125 (Fax)

                 TENNESSEE
                 Cynthia McLendon
                 TN P&A
                 P.O. Box 121257  2146 21st Ave., South
                 Nashville, TN  37212
                 (615) 298-1080
                 (615) 298-2046 (Fax)

                 TEXAS
                 Maureen O'Connell
                 Advocacy, Inc.
                 7800 Shoal Creek Blvd #171-E
                 Austin, TX  78757
                 (512) 454-4816
                 (512) 323-0902 (Fax)
                 E-MAIL:  HN2414@handsnet.org

                 UTAH
                 Ron Gardner
                 Legal Center for People with Disabilities
                 455 East 400 South, Suite 410
                 Salt Lake City, UT  84111
                 (801) 363-1347
                 (801) 363-1437 (Fax)
                 E-MAIL:  HN5856@handsnet.org

                 VERMONT
                 Judith F. Dickson
                 VT DD Law Project
                 P.O. Box 1367
                 Burlington, VT  05402
                 (802) 863-2881
                 (802) 863-7152 (Fax)

                 VIRGINIA
                 Dave Buehler
                 Dept. for Rights of Virginians w\ Disabilities
                 9th St. Office Bld. 202 No. 9th floor
                 Richmond, VA  23219
                 (804) 225-2042
                 (804) 225-3221 (Fax)
 

                 VIRGIN ISLANDS
                 Zaloma Turner
                 Virgin Islands Advocacy Agency
                 7A Whim Street, Suite 2
                 Fredericksted, VI  00840
                 (809) 772-1200
                 (809) 772-0609 (Fax)
                 E-MAIL:  HN5454@handsnet.org

                 WASHINGTON
                 Debbie Dorfman
                 Washington P&A Systems
                 1401 E. Jefferson, Suite 506
                 Seattle, WA  98122
                 (206) 324-1521
                 (206) 324-1783 (Fax)
                 E-MAIL:  pippin@spacworks.com
 

                 WISCONSIN
                 Tom Lavacek/Monica Murphy
                 WI Coalition for Advocacy
                 823 N. Second St. #910
                 Milwaukee, WI  53203
                 Director of PAAT Program/AT
                 (414) 342-8700
                 (608) 267-0368 (Fax)

                 WYOMING
                 Sheldon Ray Skelcher
                 P&A Systems, Inc.
                 2424 Pioneer Ave., #101
                 Cheyenne, WY  82001
                 (307) 632-2675
                 (307) 638-0815 (Fax)

                 WEST VIRGINIA
                 Mark McWilliams/Susan Edwards
                 West Virginia Advocates
                 Litton Building, 4th Floor
                 1207 Quarrier Street
                 Charleston, WV  25301
                 (304) 346-0847
                 (304) 346-0867 (Fax)

Ginko Biloba    http://www.naturesaide.com/products/index.cfm
America's Health Network     http://www.ahn.com/aboutcom.htm
Health information -- sponsored by the U.S. Government:  http://www.healthfinder.com/
A guide to more than 8,000 prescription and over-the-counter medications, courtesy of the Mayo Clinic.              http://www.mayohealth.org/usp/di/uspA-AM.htm
Healthlink USA      http://www.healthlinkusa.com/    Elaine R
Low levels of magnesium & Type II Diabetes
Magnesium:
                 http://www.thriveonline.com/health/Library/CAD/abstract592.html
                http://www.futureone.com/~hunter/ftext14.htm
           http://pharminfo.com/pubs/msb/mg_asthma.html
Zinc:
           http://www.thriveonline.com/health/Library/CAD/abstract29202.html
           http://www.pslgroup.com/dg/91392.htm

Trace Minerals
Cautions re: Chromium Picolinate ('96):
           http://www.thriveonline.com/health/Library/CAD/abstract25786.html
                http://www.mediconsult.com/mc/mcsite.nsf/conditionnav/vitamins~medicalnews
 

Chromium Picolinate & Type I Diabetes ('98)
Vitamins C & E, Chrominum, CoQ10 and Type II Diabetes
CoQ10
Vitamin B-6
Selenium:
                 http://www.thriveonline.com/health/Library/CAD/abstract27196.html
                 http://www.thriveonline.com/health/Library/CAD/abstract27173.html
           http://www.thriveonline.com/health/Library/vitamins/vitamin44.html
           http://www.thriveonline.com/health/Library/CAD/abstract29448.html

Harvard on Excess Vitamins/Minerals
Glucosamine Sulfate [Basically promising]
L-Carnitine
Mayo Clinic on Supplements:
                 http://www.mayohealth.org/mayo/9707/htm/me_6sb.htm <=Herbs
                 http://www.mayohealth.org/mayo/9707/htm/me_jun97.htm

Mayo on Supplements in the Headlines
Eat Your Way to a Good Mood  "Studies show that carbohydrates have a calming effect, but take at
 least two hours to kick in. Avoid mixing carbohydrates with high-fat or protein-heavy foods, which can dilute or neutralize the serotonin effect."   From Elaine R

Relationships

Invisible  Disabilities Advocate-Chronic Illness

Nobody Understands!

I copy my personal files and frequently changed folders on zip discs and update them periodically. It is also possible to do a complete  systems backup that includes frequently used files. However, I
recommend a complete system backup before adding any additional software or personal files. Then just backing up OR copying the  personal files as they are created and or modified. This works  especially well for art and music files as well as long documents like  journals.

A list of all the important  things and   where to find them on the computer. I also recommend that you set  aside a  time each week to update all of these backups and always keep them  on discs  as well as your hard drive.

Files ...................................      Copy From/Replace to
Favorites -............ Windows /Favorites
Offline Web Pages  ...... Windows/Offline
wab - (address book).....Windows/ApplicationData/Microsoft/Address Book...UserMPS and UserMPS.wa~
Stationery * ....... Program Files/common Files/Microsoft shared/
stationery *
Music *..................................Windows / Media (*only save these if you have stored additional files there)
personal documents...............C:/My Documents or wherever else you  have chosen to store them  and wherever else personal files are stored for use within programs.
With programs like Quicken (backup from within the open file) or copy  files using windows explorer from Program Files ? / ? / ? Finding these files may require some detective work on your part depending on the software that you use.
Quick Launch..(task bar icons).. C:Windows /Application Data/Microsoft/ Internet Explorer ( if you have icons on the quick launch bar at the bottom of your desktop)
E-mail ..(Outlook Express 5)...  Windows/Application data/ Identities/{4D3D0560-27CD-11D3-etc,etc}/Microsoft/Outlook Express
(these files might be stored elsewhere if you have Outlook Express 4) look for DBX, MBX, ?BX file extensions.  You should recognize the folder names. Copy everything with *BX extensions and update them frequently.
Our mail files change all the time. Netscape and other mail programs  might use similar locations that would require that detective work  again.