The Thief of Many Lives

I debated about posting this, but decided that since it is so on the nose about fibro that I would. I don't want anyone with fibro reading this to get discouraged...this is a good tool for explaining fibro to others. I sent a copy of this to all of my family and friends so that they would have an idea of what fibro has done to my life. This has also been sent to pharm. companies in an effort to get more meds. FDA approved for treating fibro.

Jacki



The Thief of Many Lives

I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.
Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."
I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine.
Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense.
I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now.
On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living.
I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time.
Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.
Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. I'll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won't understand anyway. Isolation will save you all that energy.
Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable.
Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the
medical community and insurance companies. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you look like the picture of health. This is my mask of deception.
You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare.
At one point I may give you a false sense of recovery or remission. let me assure you, I'll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn't you?
Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.
I AM Fibromyalgia


wriiten by
Kathleen Houghton, Director, Alaska CFS-MCS Association

Wow Jacki I don't know much about fibro, actually nothing, but thanks for cluing me in to what you deal with day in and day out. My heart goes out to you

Thanks Brianna. Fibro is a life sentence, but not a death sentence. At least that's how I look at it. I have fibro for life, I try not to let it have my life. I work hard everyday to function in spite of it, and enjoy the good days because knowing there are good days gets me through the rough ones. Am I making any sense today? Sorry, foggy and hurtin today.

Jacki

That made perfect sense. Did I tell you how much I like your attitude

I hope today turns into a better day. Is the sun shining there? We're supposed to have drenching rains

Thanks Brianna. Trying to have a positive attitude and my two chickies keep me from letting fibro take over my life. I think if you have a positive attitude it makes getting through most anything easier. It's rainy, chilly and very windy here today. Fall starts a rough ride til spring for me. The cold is very painful, but I can't keep the heat high enough for me to feel warm because if I do it triggers the girls asthma. So from now til spring I'll have more flareups and will be struggling to keep that positive attitude. Being in pain makes me cranky. I can overcome that when the pain levels are low, but when the levels get higher I have a much harder time keeping the cranky under control.
The girls are good about it, I explained it to them in a way they can understand - I had them each put a clothespin on one finger and keep it there until it hurt too much. When they took them off, we talked about how my muscles always feel like there are clothespins on them, and I can't take them off to make the pain go away like they did. We then talked about how pain makes people cranky, and more clothespins on the muscles makes me more cranky. Now if I start getting a bit testy, they will ask me how many clothespins are on my muscles. That's my clue to adjust my attitude, and their clue that I need them to help out a bit more. It works for us, and makes life a bit easier. They aren't quite old enough to understand the spoon theory yet, but we get through by talking about all of this in language they can understand.
Gosh...I talk a lot! lol
Jacki

That's a good analogy Jacki, the clothespins. Never thought of it like that. I wish I knew more about fibro. Keep up the good attitude, and vent away here if you feel the need

Thanks Mike. I will try to get more info about fibro posted for any who want to learn about it. For me, knowledge is a weapon in my arsenal. The more info I have the better armed I am when advocating for myself with my team of doctors.

I'd be interested in knowing more about it too Jacki. I've only heard vaguely of it before. If we know more maybe we'd be able to help you more

I will definately get more info., there are so many aspects of fibro to provide info. about. I'll get started tomorrow, I'm a bit worn out from my son's visit today...gonna rest up a little.

Rest up friend. We just want to know more about it so we can help you