FIRST PAGE

PHYSCIAN PROTOCALS:

Most Doctors go from first level urine/blood tests to a few narrow exams (revealing little, if anything of CFIDS, a disease they didn't learned about from school). Then, they re-test, telling you to do this diet/ that exercise/ or rest. Follow your doctor's advice. You need to work together. Some of my doctors read journals after medical school and discovered that I had CFIDS. If this happens to you, consider yourself exceptionally lucky and hold on to that doctor!

With other doctors, I became a challenging vehicle for their ongoing education. They noticed overtime a pattern and then started looking for a cause. "This isn't the flu, or series of a flu" If this happens to you, hold on to this doctor. He/she is working to help you. CFIDS and many other diseases can be tricky to detect but slow diagnosis is the prodical. I DON'T trust a CFIDS diagnosis based on one or two visits and an EPSTEIN-BARR titer. It could only be Mono and then again, there could be something else going on. Look for a thorough Doctor and hold on.

Some Doctors use the same initial urine/blood test month after month after year (for the pay of it?) A horse wears blinders in a race so as not to be spooked by other horses. What is the comparison here? You can't make a jackass out of a race horse? *G* No. You need to find medical help and not a white-gown robot with a programmable loop.

When a doctor is stumped, he/she may send you to a specialist. That's okay, it's honest and not the end of the world. Some specialists know the peculiar patterns of CFIDS and you find help. Unfortunately, other specialist might be stumped too. And this might generate a circle of see this one, see that one. ("Yes, you have some neurological symptoms," said a local neurologist by phone to me. "Yet, you should be seen by an immunologist. Do inform your referring physician of this, thank you." Click. Was it my lack of financial credit?) Force your way out of the circle. Collect your medical records and make sure you have one trusting physician orchestrating your medical care. If you forget to tell him/her something in the office, send a letter. I like letters. I like the written word because it documents so well. A phone call is only a single event that can easilly be forgotten. A letter is read, re-read, posted in your file and often - by a good physician - referred to in your next visit.

Other doctors blame you for your condition ["You don't exercise enough.", "Have more sex. (really, I got that from several male doctors in OB-GYN), "It's your change of life (I was 25).", "You've seen a psychologist? Maybe you should see another.". "Here, take Prozac, ignore the side-effects, it might help!"

PROZAC CERTAINLY DIDN'T HELP ME! Many of the warning symptoms in Prozac can mask themselves under normal-CFIDS symptoms. I suffered, got off it, then looked for a helping doctor. (Was Prozac a clever cop-out for a poor doctor?)

CONTEMPT IS ALWAYS EASIER THAN CARING! You're desire is to find a physican who will help you heal. Happy Hunting. If you lack that person, be brave and move on. In this world, there are doctors who care! Sometimes it takes you or me, a trailblazer, to make a good doctor out of our physcian.

I PUSHED THEN PAID. Following false advice, I bicycled myself into relapse. As things got better, I was advised to push some more. Blaming myself became a secondary condition generated by seeing more lousy doctors. I didn't believe in me or those gentle inclinations telling me that this activity was all wrong!!! Eventually, the poor physicians got frustrated with their mirror of incompetance and "refered me away from their bogus offices. (Hear no PATIENT, Speak no CFIDS, think no MORE about it,) GOD WORKS IN MYSTERIOUS WAYS.

My daily temperature wasn't high, anymore. It sunk, frequently lowgrade, 95.7 Fah and 96.8 and even 91.6 with one occasion a bit lower! By first year's end, my primary employer fired me (Blue CRoss demanded post-employment coverage at $120/month-1989/ single-person), for frequently being sick. That was after several weeks suspension eating my savings to new levels of zilch. But, I'm not one to quit. Being fired was horrible because it was new to me. I started working a regular job at 16 and never stopped. With CFIDS and CONTEMPT, I was losing more than my sense of humour.

Who are we, if not what we do? And if we can't do what we used to, Who are we now? How about, we are the desire behind our choices. We are beings in progress, always striving. We are as we have always been, OUR DREAMS. Thank God, we can always make more dreams!

CFIDS throws a wallop at the body, mind, heart, and soul. We are still beings, it is just that we see more of our liabilities than assets. I write (short stories, poems, songs, scripts, novel) therefore, I AM. PROBLEMS are a chance to apply a creative solutions. I enjoy writing more than anything I had enjoyed in my "well" life.

THE WONDERFUL WORLD OF WELFARE My Social Worker never told me to apply for Social Security Disability. With my former employer at the hospital contesting Unemployment benefits, I had to wait 3 months before Welfare would offer help. - Why didn't they teach us this in high school? What do they teach in high school?

No Income, NO savings, Thank God for friends!! Bills rolled in, most friends walked out (sick people can be kind of boring.) A local pastor proclaimed that I must be suffering some kind of God-deserts! I couldn't visit as a free-laborer to scrub rectory toilets and bake Church basement goodies. Collection agents called daily (God bless their hearts!) After the tears, I realized that a crying woman is one that is alive. It was a odd moment to celebrate!

DESPITE FOLLOWING DOCTORS ORDERS
After the first year, my weight was 100lbs over normal and plateaued (Thank God!) Treatments for one symptom generated complications or aggravated prior conditions. Taking the reigns of my life, I mailed inquires to medical institutions, made phone calls, and flipped pages on medical references remotely covering symptoms I suffered.

THE HOME SHOW with GARY COLLINS and DANA FLEMING showed CFIDS and some test my doctors could run. MY OB-GYN ran Epstein barr. THE TITER WAS high..I was so happy to have a name that might account for my ills. Then, I heard that bottom line: CFIDS HAD No cure and No set treatment.

My appendix was taken, my Gaulbladder's gone, plus ovaries-uterus-ta da [Chronic tonsilitis for better part of 10 years, but they won't take them out, because I'm too old now! BECAUSE THOSE DOCTORS ARE Chickens! *L*]

Dr. Cheney's book
Researcher, activists.

CFIDS WAS ABSURD, Why me???! I was a JOGGER, ate my Veggies, and followed my Doctors' ORDERS. As far as I knew, I commited NO Heinous SINs!...(don't have the energy, now!)
Diets were changed: low-salt, low-fat, low-sugar, lactose-free, cholesterol-free, and even the dreaded allergy-diet. I began to refrain from the white-jacket hordes hurting me for failing their "treatments".

BE GOOD TO SELF Now, I seek ways to live for today, and not on wishes that may/may not happen! The odd cyclic periods of "betterment" have become "To-Do times". When the dependable variety of hells (Allergies, allegic asthma, migraines, pain,"the gross toilet epics", and yadeda) kick on, I concoct lists and agendas for "Can-Do" days.

PROBLEMS ARE OPPORTUNITIES TO FIND CREATIVE SOLUTIONS. If your creativity is running low, collaborate! Ask for help, that's allowed. We all have strong and weak points. (Except Sir Anthony Hopkins, he is perfect *SMILE*)

KEEP YOUR MIND GOING:

Crafts are a great way to "take you away." Working on a project then finishing it, generates a wonderful feeling. We need the satisfaction of accomplishment. Making it to the doctor's door doesn't do it for me. Making it to the bathroom door is another story.

You might be able to work online. I'm finding some success with it, now. Maybe you'll need software skills to do computer stuff offline. Maybe you want to explore doing your own programming like me. Maybe you want to do VCR repair or paint, sculp, chisel, or whatever. If you have some programming background, how about putting up some of your own shareware. There are many places to do that for free. Plan, strive, live, dream, survive!

AFTER "4 YEARS" I was diagnosed as having CFIDS complicated with FMS (fibromyalgia), IBS (the toilet epics!), 'yadeda' and Multiple Allergies. I was told, I would ever recover. "Treating you is a "research matter", we're not pursuing "(SUNY-HSC at Syracuse!). At least, they were upfront and honest about not giving a care. Sad that they are a teaching medical institution.

THE JUDGE called it a horror story! I had to fight for my Social Security Disability! I still fight to keep it every other year. Every three years, I am forced to undergo a review. The last review, ended a few weeks ago. It consisted of a letter threatening to dismiss my benefits (survival funds) on a week's notice, contingent on the medical evaluations submitted by THEIR doctors. The whole process was elongated to last from August to Novemeber. I was forced to see a medical doctor and a shrink. I was bombarded by absurd phone calls at odd hours of the day from Social Security and I was sent difficult forms to fill out without help. I'm more angry now than anything else.

Though, I'd love to have a self-sustaining paycheck. The initial court costs were $18,000,
and legal aid was $9000
and you, the taxpayer, paid it(together with the fact that most surgeries that I received where Emergency Room expenses.
Since MEDICAID Considered modern tools like a lazar not covered, I was gutted like a fish from my heart to below my belly button in order for them to remove my gaulbladder. Instead of a one-two day proceedure with four one-inch incisions, you paid for a week long hospital stays. THEN, you paid for a second week because I suffered a major staff infection from my 52 staple incision.

The hospital doctors released me with antibiotics and another infection. Funny, those medical reports never quite make it to referring doctors. Even Social Security can't get all those reports from the University Hospital.

Because SOCIAL SECURITY has a hard time recognizing CFIDS/FMS as a chronic disabling ailment, my initial paper petitions for Social Security Disability was ignored. This is considered a standard formality for court! THey deny outright the second paper petition. My real advocacy, review, comes when I went to court.

I have been housebound. On most occasions, I can't drive safely. I have been subject to episodes of allergic asthma, collapsing, muscle fatigue, and episodes of limb "failure?" Going to most doctor has been a repulsive waste of time, (how many choruses do you need to hear "I can't do any more for you.") I did have a terrific physician and I wish I could have moved her when I needed to move in with my mother. It is strange being 36 and needing to live with my parent. At this point, I can't afford anywhere else. $600 a month is not a bounty to live on.

PRIMARY FACILITIES AND TERTIARY CARE Hopefully, the AMA will start nickpicking in their own backyard, even if it is only to improve the quality of their alphabet-associates! We need compitence not mutual fund experts.

DOC, please leave comedy to comedians and maybe a 'next office visit' might provied the satisfaction of being a tru "HELP" experience for both of us.

THANK YOU for Visiting! Someone you know has this disease. CFIDS and other chronically ill patients deserve more than contempt when reaching for care. Be the one friend who makes the difference. Start a differnece with that first few awkward visits. Real change starts physically. A check in an envelope just doesn't cut it for any soul; yours, theirs, or mine.

***UPDATES July, 1997
I'm daring to say that I am getting better. I've been following Jeff's link on Mercury toxin + Candida in the blood and am getting stronger. From wheelchair to some walking and steps to make that wheelchair ancient history.

***March, 1998
I feel God towing me along. There's never any advantage to quitting folks! Last month, I made $75 for a writing project. I enjoyed it! With more stories to peddle and a script to sell, I hope to greet self-sufficientcy this year. Keep the FAITH! GOD BLESS YOU ALL!!!

***April 1998
In addition, I'm selling books online/offine. Climbing for independence isn't easy. We all deserve it just ask Tantilus. *grin* God Bless you!

***MAY 1998
A few setbacks won't kill me. My computer is on the fritz and as you know that means trouble. Though, I've high hopes for book selling on Internet. And, I've finished my tutorial on BASIC/learning C++ now. Wish me luck!

***JUN 1998
Plugging away at C++, BASIC was fun. There is a lot to learning computer animation especially from a book. Every problem can be smashed into pieces easy to handle. I've sold some books online. Step by step.

*****SEPT 1998
Summer was brutal. Relapse..climbing out as best can. That's kicker...just need to keep coming back for more.

*****Feb 1999
Happy New Year. Things are progressing. I've been reading a lot. For a short while, I got the chance to drive. When I had to pull over, because i couldn't tell what the lights on a traffic signal meant in the moment, I wisely gave it up. There are other challenges to find.
One of my short stories made a publisher's "short-list". The editor wrote in long-hand that she enjoyed my tale. it's a rejection but it's a better rejection. It's a measure saying I'm getting better. I'll get there.

April 11, 1999

Just had a birthday and a kick in the teeth. We come into this world crying because we are alone. In substance, we aren't are we? I reach for faith and find a certain solidity, I'm not. Battling ON!

Jan 2, 2000

Hey, I've made it into the new millennium and notice that I've spelled it right! *L* As an associate with Amazon, I sold over $1,200 worth of goods and have earned a commission that is roughly $70 for two months. I went to Social Security to ask just what help I could expect and what the right thing for me to do, earning funds. I was laughed at. Social Security does not help with education or costs or true incentive programs that might help me make a steady income. I was told if I make more than $63 a month, I will be penalized for my Social Security I - supplemental. I was told if I receive more than $400 a month, I will lose my $600 Social Security check. I was told that expenses like paying for the Internet, upgrading my computer, learning programs/ software would not be allowances and unless I was blind and needed a machine that reads allowed text, they had nothing to help me and had no place to refer me. And that's our Social Security Middle-Finger of help, folks. But, I will not quit. God didn't give me a breath for that!

>THE DISABILITY ACTIVIST	__FRONT PAGE__	CFIDS and MERCURY POISON/ profile of a "Cured-Patient!!"
WAZZIE & CFIDS!	cfsring	LISTENING TO CFIDS
FMS ADDRESS BOOK

Page edit: 12 02 99

annml@hotmail.com

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