Fight back from the nasty depressing and discouraging Cfids. You have assets within. Take the time
What can a CFIDS person do?
Well, I've got CFIDS and now, I'm a published author (May 21, 2001)
It is hard to struggle when your stanima is clipped by Chronic Fatigue Syndrome. The easy glimpse is to sit back and shrink behind four walls. When your memories outway your dreams, it's time to get more dreams! Summon the power of your soul to a person, again. Humor helps. I hope my Cfids pages tickle a little empowerment in you.
MY DOCTORS CALLED IT CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome, and FM (fibromyalgia). If you are virtually clueless, relax, you're not alone! If you are a patient with CFIDS, aka a PWCs, you suffer cycles of pain, frustration, and broadband selection of annoying maladies throughout your body. CFIDS' cycle of sicknesses make up a true medical syndrome. Even with today's modern technology, CFIDS baffles very well. ROBYN's CFIDS Page.) Power is ours when we support each other.
Hello, I'm a PWC (person with cfids) ten year and furious with the lack of effort and funding directed for toward the treatment of this disease. Come on, FDA, where the hell is that Ampligen approval?!! I don't exist to fund my doctor's office bills. He and she and they seem to be covering them quite well. We have seen several rounds of longevity studies using Ampligen. The pro is that folks who had it, improved, some times as much as 95%. The con is ...what? The patent rights? come on!
FAITH IS FOR GOD NOT DOCTORS: my first CFIDS coping lesson! (RELAX, NO TEST LATER) I've the "CFIDS variety-pack", to name a few options: Fibromyalgia, (like having arthritis only it runs through all bones. Pain, fever-chills, muscle weakness, skin thingies. They vary in severity by lessening for a brief time before coming back in full regale. The sicknesses seem to lesson or leave only to return. THAT's NUTS! And that's the hallmark of CFIDS.
I've bizarre allergies (the list of non-allergies is shorter!!), endometriosis. [took a prudent doctor to test and discover that those maladies have caused a plaguing of extreme menstral and back pain for over ten years! It was otherwised assumed by several specialists and general practitioners to be a - giggle - "psychosomatic disorder".
Now, don't get angry. They wanted to save you money because I'm now poor and reduced to Medicare/Medicaid. Those Laparoscopies in the early years were just so darn expensive (a couple thousand when all was tallied!). Were they right? Hm. Let's see what they saved you. Afterall, it wasn't my welfare they secured.]
GOD MADE US "HUMAN BEING", NOT HUMAN DOINGS! (thank you, CAROL!!)
At age 24, I WAS WELL,tackling full-time school, several part-time jobs, something called WEEKENDS, clubs, and the usual then some(s). Suddenly, BANG, Ocotber 11 1987, I recorded a high fever and couldn't raise myself from bed. As the days went forward, I suffered freight-train diahrea (bathroom Sprints!) with vomiting (gave me something else to do then just sit on the bowl).
At first, the school nurse dubbed it "the flu" and passed me anti-biotics. Within the week, the symtoms began to subsided. Cool, I thought I was getting better (Tantilus would understand!), but the round of sicknesses returned to hurt me all over again and again. [ Do you know what it is to become accostume to using a mirror leaned against a bathroom door to finish watching a tv-shows in the livingroom so you won't be clueless?!] Eventually, I could afford a VCR but come on!
WEIGHT CHANGES This I consider the worst. In the first two months, my body morphed up 40 lbs. Nope, it didn't stop there. In order to keep up, I had to purchase new dress-sizes every other week and plan ahead to get at least one set of clothes with the next larger size - just in case.
It was so bizare, these sickness cycles. I couldn't touch cigarettes (smoked only a pack a week). Placing make-up on my face burned. After a few months, I credited an arthritis-type pain running along my arms and legs (developing-fibromyalgia.) I asked, "Am I getting old, Doc?"
I missed many workdays and classes (my attendance before was almost perfect!). TEACHERs at COLLEGE SENT ME TO NURSE because they saw an awful metamorphis. By the beginning of the next semester, I saw a visiting doctor (College Health Coverage) who couldn't believe the persist reoccurance of influenza! He gave me antibiotics and a pep talk then sent me home for bedrest.
IN THE MIDDLE OF THE SECOND SEMESTER:
My life was really droll. NO WEEKEnds- NO CLUBS - NO OTHER FUN ANYTHING-N0 kidding Withdrawing from school allowed me to keep two of my part-time jobs. My paychecks were meek yet my bills never stopped. And,neither did CFIDS.
THE "FATIGUE" IS A TYPE OF ANERGY To overdo with CFIDS = collapsing to the floor, dropping your baby, falling down a flight of stairs, weakening behind the wheel. When at work (was a retail clerk at one job), a fellow employee found me lying in the aisle. I was barely breathing by her estimates. She got help to send me home.
Later she told me,"Customer's would probably think you were a typical employee sleeping on the job, but I know you. What's going on?"
I said often, "I don't know but the doctors are looking." In a way, I knew my doctors were looking in a circle. They ran the same tests that showed the same nothing results. An impulse encouraged me to right the Endocryn section of the local University Medical Hospital. I was unusually enormous and not through overeating. I had a lack of energy and lack of too many aspects which I associated as "Being Me."
"Hope you feel better soon!".
"Oh, sure," I would say.
not being able to read swirling words on a page. I found myself strategically leaning on any available surface just to stand and sometimes just to sit up. Often, I looked for places to sit when I went out. Standing soon lead to a panting event.
I wasn't sure how much was the weight gain or whatever. My legs cramped, my back pinched as if squeezed in a vice. The "sick episodes" cycled quicker with the hurting effects growing longer. Shortly, employers sent me home regardless of what I wanted!
"Hope you feel better soon, Ann!"
"Do everything the Doctor says and you'll be fine in no time!"
"Keep your chin up, you'll be dancing soon!"
What people offered in caring phrases became so irritating. A lot of Chicken Noodle came the first year. Towards the second year of LIMBO, a few lasting friends sent lists of bizarre home rememdies. I stuck with my doctors.
As years past, the strange remedies became more and more appealing to this desperate science student. I often dreamed of my being flowing downward in a pitch cavern. Those wonderful cycles of antibiotics danced around a two-week curfew. Sure, they made things better for a short time. But, Benedryl didn't maintain a level which chased my allegies to stand-down. When my doctors issued anti-depressants to "bolster the immune system?", my sickness flare-ups increased. And, my Gaulbladder didn't survive the stones they formed.
Codeine, pain killers, meant more compounding irritation for IBS [Irritable Bowel Syndrome- that's technical for diahrea that "freight-trains" through your system.] (What Sadists invented the Colonoscopy?) Valium lasted a few months to relax some muscle in my neck that pulled while I was sneezing my head off. Now, regulations won't permit it for more than a few weeks. We have to "tough-it out." Oh yeah, tough you!
Doctors ordered more medications to counteract bloodpressure fluxes. Then, I got some for stomach upsets, and sleep deprivation, and menstral imbalances, and water retention. yadedas brought me up to 19 different medications at once. Was I alive then? Always physicians referred my case to more physicians. I soon felt like Abbot & Costello's Who's on First! Don't doctor's know, I go to them in hopes to feel better? Is medication red-tape hypoallergenic? *G*
My Mom said it used to be, "in doctor you trust." NOW, watch-out for "clinician's Inc," and the sHMOs, and the "medical institutions" who derive funding from powerful drug companies. We've "help-care persons" with more asperations in profit margins then actually helping a person feel better. Ever notice double and tripple charges for some of the same lab test? One for the doctor's office, another for some "labratory" in another state? What happened to HEALTH "CARE?" Oops, I keep using that four-letter word.
Inbetween the worst cycles came a respite, a "can-do" time. At first, I believed that each bout, each cycle was an individual illness and that I just kept having the misfortune of catching the contagion again. Then, I suspected that it was one strange illness that teased a sense of getting better. The betterness times acting like a "false-hope" whenever my doctor gave a new medication and judged an improvement sign. My doctor was wrong. I even fell for it when I dabbled into some dire home remedies. (I always fell for it!) Later, I found some of herbal, amino acid, and overthecounter suppliments that helped to improve and shorten the bad times. There is hope, folks. Hang in there!
FRIENDS AND FAMILY believed I would heal. Naturally, they can't picture me in any other sense. My physicians said,"It's nothing to worry about," "It's not like it's contagious!" "It's not like it is AIDS."
I asked, "But what is it, Doc?"
And, Later I asked, "Why can't I give blood?"
In fact, in 1995, the CDC listed CFIDS as a "Number 1 Priority Infectious Disease." This classification has not changed.
And, "Why is the flu shot considered harmful?", "I have a long list of don't. But, what else can I do?", "Where can I go to get help for CFIDS?", "I WANT MY LIFE BACK!"
I was honestly told to forget about recapturing a healthy life. I was told that I needed to adjust to the level at which I live now. Now is the only living to which we really can cheat ourselves.
I've learned that medical silence can be horrific. If you know this too well, ARM YOURSELF WITH INFORMATION!
"If you want from this world, you got to give to this world." Take the time to be a person. I had to stop myself from being a whirling dervish to those who stopped to care. Folks around you need your direction. If you lend a little compassion, your angels will guide you to a higher plateau. In the last few years, I've come to believe in angels. It's the best endorsement I can give. God's Angels never let you down if you ask them in.
_____ ALL RIGHT! Trade Size Book is released, 467pgs, good size print, and is featured at Xlibris: Strategic Partner of Random House Inc. www.xlibris.com/DamselintheRough.html Xlibris is publisher and is also a bookstore taking orders online and off. At the moment, they are the only ones accepting orders.
Ask for title: "Damsel in the Rough"
ISBN # 0-7388-9892-9
Author: Ann Mary Tempesta
This title is available to any Book retailer who uses Ingram, Lightening Source Inc, or Baker & Taylor Distributions. In addition, any qualifying book seller is entitled to retailers and wholesaler discounts from Xlibris Corporation. Should you decide to add DAMSEL IN THE ROUGH, please, let me know. I will add your online link/ offline information here.
Many blessings to you!
Concerning irregularities with webpage displays at Borders: and Barnes and Nobles. As yet, the large distributor that supplies Amazon.com, Borders, and Barnes N Nobles has not fully registered the title: DAMSEL IN THE ROUGH. The registration process takes 60-days from publication date in order to fully register a "Print-On-Demand" book. (Roughly, 60-days will fall on July 21, 2001.)
_____SAMPLE TEXT: This is Chapter 4 split into small pages, no frames, and much kinder to WEBTV browsers.
PWC Pages/E-mail folks with cfids/Sign UP for FREE! NEW!!!GUIDE TO CHRONIC FATIGUE SYNDROME/ Excellent! LISTENING TO CFIDS
Eat for the Health of It Martha A. Erickson, Barbara L. Dempsey. Your eating can help or hinder your health condition. Whether you have a health problem or not, what you eat can help or hurt. EAT FOR THE HEALTH OF IT provides meal plans for many health related problems. Fibromyalgia and Chronic Myofascial Pain: A SURVIVAL MANUAL by Devin J. Starlanyl, Mary Ellen Copeland. Whether you were just diagnosed with FMS, or have been searching for FMS information for some time now, this is THE book for you. It's complete, easy to read, and a must for all FMS sufferers. Fibromyalgia Advocate : Getting the Support You Need to Cope With Fibromyalgia and Myofascial Pain Syndrome by Devin J. Starlanyl (Introduction), Hal Blatman. This book covers all aspects of how one must live and cope with FMS. It gives insights into what a FMS patient is experiencing and helps the person to ask the right questions of her/his doctors, helps her/him explain their condition to employers, and makes her/him aware of her/his rights as someone living with an "impairment" that few understand. A MUST own for FMS patients. **Amazon rates book as top: 5 stars
Page edit: 03 26 2002