I wrote this to Washington today for the Arthritis Act.  I hope you will join me too in writing what Washington needs to hear! 

 

I have Fibromyalgia Syndrome, which falls under the Arthritis Foundation.  Fibromyalgia Syndrome (FMS) is a common condition affecting at least 3.7 million Americans, if not more.  FMS causes scattered pain, lack of energy, poor sleep and myriad of other signs and symptoms.  Because symptoms of many diseases cause similar complaints, diagnosis is difficult.  Often many weeks, months or years will go by before the person with FMS or the doctor recognizes what is wrong.  During this time the results of an examination by the doctor are normal, as are routine studies like blood tests, urinalysis and X-rays.  But reassurances that nothing is wrong provide little relief from pain, and the patient and doctor become equally frustrated that the symptoms refuse to go away.  A patient worries that a serious illness remains unrevealed, adding to the patient's anxiety.  The key so far has been the active participation and take charge attitude by the person with FMS.  There is a real need for more awareness among our health care professionals about FMS.

 

I have aching, burning, shooting pain from my muscles, fatigue and disturbed sleep. My neck hurts, my shoulders, my arms down into my hands and so does my lower back, hips, knees and feet from pain due to FMS.  I can't remember the last time I have woke up refreshed from sleep.  I have terrible headaches, irritable bowel syndrome, irritable bladder, morning stiffness, and memory problems.  I now have numbness from the elbows down into my hands most nights.  I have sensory loss, and now ocular impairment.  I have been treated in the past for non-cardiac chest pain which simulate cardiac disorder and often have abnormal smooth muscle tone in muscles surrounding the bronchi of the lungs which caused severe life threatening pneumonia on three occasions.  The list could go on, but the bottom line, I can't work, I can't hold a job.  

It takes two incomes in the Bush Administration to raise two child in today's economy and actually have food on the table.  I can't do that any more, all the burden goes to my 56 year old husband who has lost so many jobs due to down sizing, companies going under, including Enron, and lay offs, plus age discrimination, that can't be proven in this country's courts, due to the current laws and enforcement.  Mr. Bush wants to raise Social Security Retirement age higher and higher, yet employers want to lay off workers by the time they hit their 50th birthdays.  They don't want them or their families causing their insurance rates to rise due to illness brought on by age.  They want to hire young people, for less pay, who are willing to work 80 hour work weeks to keep their jobs and let their children raise themselves, of course, unless you are rich like movie stars and President Bush and have lost sight what it is really like to be a real normal person living the every day life in this country.

 

FMS hits all ages, women and men.  My daughter who is 16 years old has now been diagnosed with FMS.  It's a death sentence of pain and illness for the rest of her life unless something is done.  She lives with that fear on a day to day basis watching me suffer and feeling her own aches and pains.  You think I am kidding, you think I am blowing things out of proportion, I am making a mound out of a mole hill.  I am NOT!  FMS is a serious illness, so serious in fact that with more and more health care professionals learning to diagnosing this illness, you, are someone in your family will have this or have had this and has never really been explained.   

There are no real treatment protocols for FMS and most FMS suffers can NOT manage their pain with Advil, Alveve, or Tylenol as the Arthritis Foundation suggest.  Nor by just taking antidepressants.  They suggest exercise, but most FMS patient are in such great pain and without funds and the lack of places with 92 degree pools to exercise in that most give up.  I know, I have been on several support groups for years listening to people talk of this very issue and many more.  We can do gentle stretching of muscles all day and every day, but I can tell you, I will be in pain while stretching, after stretching and the next hour and the next day, week, and year.  This is a year in and year out illness with no hope of escape. You can rest and relax all day, all week and all year, but the pain does not go away nor the need for you to function and work to suppose your family.  

I have attended education classes on this illness and have done extensive research and so far have found very little help in actually making headway into this illness.  You can have all the healthy habits in this world and this illness will not go away.  I have been there and tried that, I have taken just about every supplement known to man and just about every medication the doctors can dish out and still I suffer, and my daughter suffers.  Just going to high school and sitting through classes is very hard, missing school days due to pain and headaches is hard to keep her grades strong for a strong future and the ability to enter college or later the work force.  I wonder if she has a future.  She is 16 and takes Tramadol, hydrocodone for break through pain, she is on antidepressant, muscle relaxants, sleep medication and going to physical therapy twice a week, as long as I can pay for it and the insurance company does not say enough!  

I have tried acupuncture and acupressure, massage, biofeedback at Baylor Hospital, meditation and guided imagery.  And, I can tell you for a fact that when I have a major flare of this illness nothing works other than going to bed with 325 mg of Percocet as many as four times a day.  I can be in bed for days, weeks and even months.  The longest flare was for 6 months.

 

I have seen many doctors from rheumatologist, general practitioners, psychiatrists, chiropractors, nurse practitioners, occupational therapists, and physical therapists and more to no real avail!   

I have use my humor, sense of purpose, sense of control, social support, and positive self-image only to have this FMS still cut me down.  FMS has effected my sex life, my marriage, and my life to the point of no return.  I don't want this for my daughter, my child, my future hope in tomorrow wasted away due to FMS.  I don't want the cycle of pain, reduced activity, deconditioning, fatigue, depression, and stress to haunt her for the rest of her life.  What parent would want this for their child or for themselves for that matter!  You can have all the proper body mechanics and still you will have pain from FMS. You can develop energy saving techniques and you will still have pain from FMS.  You can stand on your head and ask God to take you and, if he doesn't, you still have pain from FMS.  You lose your ability to make an income and you lose your ability to manage FMS.  You have grief for the former self because you have suffered a loss, you grieve for your old life, your family grieves, they want the old you back.  Some family members can never except FMS, they can never acknowledge FMS and if they try they often spiral into depression right along with the patient.

 

No FMS patient can take enough of every day stress out of their lives with little income to handle stress and emotional challenges that most well people can manage.  If you lack financial funds, jobs and health care no one can manage FMS. NO ONE!

 

Mr. Bush, where are the jobs that are needed in OUR country.  Why are US companies taking our jobs away from Americans to third world countries, so that they can just make more money to line their greedy pockets to help you pay to stay in office.  Do you really care about the American people?  Our men and women are dying in a senseless war and we pour billions of dollars into third world countries, but do little at home to make sure that we have good jobs, health care, and retirement for today or for the future.  We are supposed to be the greatest country in this world, what happened?  Your children are born with silver spoons in their mouths, they don't have to worry.  But, my children and the bulk of children in this country are NOT!  I hate to say this Mr. President, but you have blinders on, you know the kind that you put on a plow horse.  You do know about plow horses, right?

 

Senator Hutchison, Senator Cornyn and Senator Hall what are your plans for the Arthritis Prevention, Control and Cure Act?  Will you let my daughter's life fall through a crack, will you be their to pick up her broken heart, will you be their to hold her hand when she suffers such pain she can barley breath or talk.  Who will be there to make sure she has health care, a job, a life without pain and suffering beyond what any cancer patient suffers with day in and day out, year in and year out, until one picks up a gun and ends it or dies a slow painful death from having FMS with NO hope in sight for proper treatment, medication or cure.  

How would you like to walk in my shoes and suffer with FMS and watch your child suffer with no hope in sight in their life time.  That's what my mother has had to do with me and now her granddaughter.  When will this all end?  I need your help.  I'd love to get in front of congress and state my case.  Pay for me to fly to Washington, my hotel and food expense, help me lobby for FMS, but wait, I most likely will be too ill to travel that day, the stress of traveling or speaking in front of the house would cause me the pain and the flare from hell.  I can not do this illness on $928 dollars a month from Social Security income and neither can my daughter.  

What does it really take to get people in Washington to hear the people, after all I pay taxes, your salaries, your health care, your retirement.  You don't retire on what social security offers any way.  What about me?  Where is my job, my health care, my hope for the future, my retirement, where are my golden years, what happens to my child after I am dead.  My mother wonders the same things about her daughter and now her granddaughter.  I know I am not rich and I really don't matter to you, but I should!  Please help support this bill and other questions that I have asked.  Please do not send me a form letter telling me how you may or may not support this bill, please just do your job and care and support this bill and the concerns of the very people who placed you in office hoping for a brighter tomorrow for their children.  Good jobs, good health care and retirement for the golden years.  

Not everyone gets to go to The University of Texas of Harvard nor will have learned to invest in the stock market, mutual's, or the bond market.  What happens if and when it crashes like it did in the 30s, and not so long ago when people lost all their life savings.  I guess I should learn to pull a rabbit out of my hat.  But, please don't let my daughter down and not vote for this bill, YOU are all that she has.