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    Letter from the friend of an MLC worker--

 

"It is about time our faceless disease was out in the open, without shame and somehow acknowledged for what it does to not only the person that is encumbered by this horrible thing, but also the social shame, families that grow apart, friends that think your lazy or neurotic and self absorbed. The problem of not being able to work, but unable to qualify for disability, etc.  Not to mention one of the worst things which is being unable to get medical insurance for under a $571/monthly rate, paying bills with a small savings account, but too panic stricken to even be able to discuss it with anyone because of all the fear involved.  This is what many of us are going through.  The depression and anxiety is overwhelming. 

 

We need both medical and psychiatric professionals to open their hearts and minds to us - to offer some type of assurance that we will at least be able to "survive" this horrible thing that has taken our bodies over - assurance that there will be medical and prescription bills which will get paid, some type of income to help us survive with a roof over our heads.  Be able to qualify for the purchase of a home with 1% down and no closing costs which is offered if you have been employed for 2 years, most of us will never see employment again, and we are many of the persons that "really" need to know that we will have a place to live because we are handicapped and are unable to work.  Yes, low to moderate income families need to be able to purchase a home for themselves, but most of us has contributed to the economics of our country and are unable not only to qualify for these types of "grants" but shamefully can't even qualify for any type of government assistance because we "don't look sick".

 

As you can tell by the time of this writing, insomnia is so common and with that comes the next day of feeling so ill from the lack of sleep, etc., etc.

 

Please contact me at your earliest convenience - look forward to participating in this long overdue cry for recognition from major people whose words and faces are known and carry a modicum of credibility - they seem to be our only hope for this debilating disease to get recognized and funded for immediate research.  We have been the silent few for far to long. 

 

The MS Society gets an annual grant of $34 million dollars a year.  They estimate that 500,000 people have MS, many of them aren't diagnosed with it for several years, if ever.  However, once they are diagnosed, they are eligible for EVERYTHING  the government has to offer, this includes medical help, pharmaceuticals, home health care, low cost housing, all the amenities that a "qualified" disabled person is entitled to under the Disabilities Act.  Many of these people are functional, working and carring on with their lives.  ?e need to be recognized and placed in our own segment of "disabilities" officially by the AMA/Government."

 

 

 

 

I'm enjoying a book by Barbara Johnson called "SPLASHES OF JOY IN THE CESSPOOLS OF LIFE."  It's great for anyone going through adversity....which is most of us with FMS/CFIDS!   It is very uplifting and helpful!

 

I am very blessed to have a wonderful pastor and loving church family at Russell Baptist Church in Green Cove Springs, Florida.  They have sure helped me through a lot of trials lately....."Bear ye one another's burdens, and so fulfill the law of Christ." (Galatians 6:2) 

 

 

 

With my dad's recent illness and death www.fms-help.com/eulogy.htm and looking out for my 83 yr. old mother who lives 50 miles away and has a lot of health problems, my nerves have been shot!  I noticed my heart beating very hard and my pulse very fast.  I felt sick like my head was going to explode most of the time.  Every time my cell phone rang (which is a lot), it made my nerves jump from all the distressing calls during my father's illness.  I finally went to the doctor and he said my heart was beating too fast from too much adrenaline.  He put me on a low dose of atenelol (for blood pressure) and a tiny dose of lexapro (for depression and anxiety).  I was having a hard time controlling my emotions--dissolving into inconsolable weeping when I thought about what happened to my father.  The  stress from the intense grieving was destroying my health.   These meds are helping me and I feel a lot better now!   I am taking less than what the doctor prescribed to avoid the side effects of extreme fatigue.  (Those of us with FMS/CFIDS don't need any MORE fatigue!)  Other than all that, I have been doing fine!  A list of what I use/do is at www.fms-help.com/what.htm  This is how I normally maintain my health and keep up with my busy schedule! 

 

One more thing....I was on TV last week during 2 news segments about fibromyalgia and its symptoms of insominia, depression, muscle pain, fatigue, IBS, irritable bladder, etc.  A TV reporter for Channel 12 in Jacksonville interviewed three of us who have FMS/CFIDS--me, Carla (who works on the Million Letter Campaign) and Regina (from the Arthritis Foundation).   In one of the segments, the reporter pointed the microphone toward me and asked how many times a night I get up for the bathroom (in reference to irritable bladder problems associated with FMS).   I told her 6-10 times on a bad night.  Well, that episode was seen by people my husband works with, people I know at church and in the community.  (Let's just say it was somewhat embarrassing!)  The next day, my husband came home from the grocery store with 24 double rolls of Angel Soft toilet paper.  He said, "I hope you enjoy this!!!"  HA!!!!!  Seriously, I only get up once or twice a night now, but during my worst FMS days, it was much more, so that's why I gave the answer I did.  The purpose of the TV segment was to provide the community with more awareness of fibromyalgia.  It seems to have worked, because Carla and I are getting quite a few calls and emails from the program.

 

Well, I hope you are enjoying the spring weather.  Get out and get some sunshine!  Here in north Florida the azaleas have already bloomed.  It is in the low 80's today.

 

May God's blessings and His eternal purpose be with you and your family.

 

Faithfully yours,

 

 

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