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| DEALING WITH FIBROMYALGIA ~ PART 2 |
| ~ TESTIMONIAL ~ Today was a good day. The talons of the DD(dreaded disease) loosened its hold enough that I was able to work in the yard for a few hours. When I speak of yard work, I do not mean grubbing and hoeing, or even raking, rather sitting on a soft cushion and pulling weeds out of my moss lawn. Some would not even call that work, but for me it is a big deal. See, I have had Fibromyalgia for longer than it has had a name. When I was first diagnosed in 1976, it was called fibroneuromyofacsitis. A fancy name for a disease that causes so much grief in so many people, mostly women. The years of muscle inactivity, along with multiple surgical procedures on my neck have created a cycle of profound weakness that leaves me unable to take a plate down from the kitchen cabinet. If i need something before my husband comes home from work, I have to 'make do' with whatever I can safely retrieve. This past weekend is a prime example of this, when I tried to take the iced tea pitcher down from the top shelf of the refrigerator. Naturally, for me, I dropped it. It landed on top of my already chronic sprained ankle and glanced off my shin creating a huge bruise. Just try and go an entire day not lifting your arms, imagine not being able to curl your own hair, or even brush it, or having so slip bras down over your head because your arms are too weak to fasten the hook. Imagine not being able to take off your good clothes, if they slip over your head, until your husband comes home to do it for you. Imagine the derision not being able to travel creates in a distanced by miles family. I have only seen my youngest daughter's children three times in their lives, and my grandson just turned eleven! She admits she is too lazy to bring them from Florida to see us in Virginia, although her sister, a working professional, makes it a point to get up here every summer. Of course when I do have the opportunity to see my son's children who live locally, although it is not often enough, I am worn out within ninety minutes, but I try hard not to let them see the pain. I don't want to scare them. The best way to describe the daily pain is searing, although on the 'bad days', it is almost unbearable! Add to it the fact that pain medication makes me ill, and that the loss of sleep leaves me nodding off unexpectedly. My clothes no longer fit due to the inevitable fat pad around my belly, i.e. inner tube. My nails are ridged and brittle. I am often short of breath, dizzy, and disoriented with the subsequent result of loss of balance. I am overly sensitive to heat, cold, and humidity, that limits the days I can work in my beloved garden, and I can no longer drive at night, thus many meetings I wish to attend are beyond my capability. My eyeglasses hurt my head and behind my ears, but the changes brought about by the disease have left my vision too weak to go without them, and contacts are out of the question because of the inherent dry eyes, that burn all of the time. Just read a list of symptoms, and I have almost every single one of them, but I have had many, many years to accumulate the worst of the disease. Almost anything that I do requires intense effort and sleeping is one of the more difficult. People who live with chronic pain cannot sleep well since every move creates pain. We live in a world of semi-sleep while deep sleep is denied us. That creates another realm of problems because we find it difficult to concentrate, often totally forgetting the word we are trying to use. Also, don't be offended if I have forgotten your name, which is par for the course, and don't ask me to write anything if you ever want to be able to read it. This is just an example of the myriad of problems that living with the D.D. entails, but if you want to know more, you don't have to look far, someone at every gathering you attend is coping with this illness. Pray to God it never happens to you ! NOT SO NEW TECHNOLOGY: Today is some better because of a not so new technology that is just now getting some attention since Jerry Lewis, in Reader's Digest, talked about his release from chronic back pain. This new therapy is an implanted tens unit. The basic way it works is that an electrical stimulation device is implanted under the skin with a wire that goes from the unit to the spinal cord. There its function is to block pain impulses with a very minor 'shock'. The brain cannot process pain in two places, so the electrical shock pain should absorb the pain of the D.D. This is in a perfect world, and while it helps, it does not alleviate the symptoms I spoke of above. The pain is lessened, but the functions that are so normal to most, like the ability to raise my arms, is not lessened. I will take whatever relief I can get and thank God for research and physicians who care. It was worth the two (three in my case since I had an adverse reaction after the first implant) day surgeries it required. I would do it again. Oh, the medical term for this is spinal neurostimulator, I think. My short term memory is not great either ! Written and submitted by Diane S. Sanfilippo~ 8/11/04 ~ ~ ~ ~ SO THERE YOU HAVE JUST A FRACTION OF WHAT THIS DISEASE DOES TO YOUR BODY. THERE ARE SOURCES AND COPING AIDS AND ARTICLES TO MANY TO COUNT, ON THE INTERNET, BOOK STORES MAGAZINES, AND OTHER PUBLICATIONS TO MAKE YOU AWARE OF THE SYMPTOMS AND OTHER SYNDROMES IT CURTAILS. BUT UNTIL YOU EXPERIENCE THEM FOR YOURSELF, THERE IS NO UNDERSTANDING THE PAIN, THE DEPRESSION, THE SLEEPLESS NIGHTS. THIS IS THE REASON I WANTED TO START THIS SERIES ON THIS SOMEWHAT UNKNOWN AND MISUNDERSTOOD DISEASE. IT EFFECTS SO MANY AND STILL SO LITTLE IS KNOWN ABOUT WHY IT IS THERE AND WHY THERE IS NO KNOWN CURE. AS FOR MYSELF, THE FIRST FEW YEARS THAT I HAD THIS DISEASE, I WOULD ACTUALLY HAVE WHAT I REFERRED TO AS REMISSIONS. I WOULD GO FOR WEEKS, SOMETIMES MONTHS WITHOUT ANY PAIN TO SPEAK OF, AND THEN I DISCOVERED WHY. THE MAIN TRIGGER FACTOR FOR FIBRO IS TRAUMA. IT DOES'NT NECESSARILY HAVE TO BE PHYSICAL TRAUMA, EMOTIONAL TRAUMA CAN CAUSE FLARE UPS AS WELL. FOR EXAMPLE, A DEATH IN MY FAMILY WOULD CAUSE A FLARE UP, AND IT WOULD LAST FOR A FEW MONTHS, AND I WOULD HAVE A PERIOD OF RELIEF. HOWEVER, THIS PAST YEAR JUST BEFORE CHRISTMAS, I TOOK A MAJOR FALL HERE AT HOME, I WAS HAVING ONE OF MY MANY SLEEPLESS NIGHTS, AND WAS ON THE COMPUTER. MY OFFICE DOES NOT HAVE A PHONE, UNLESS I KEEP A CORDLESS PHONE WITH ME. THIS WAS VERY LATE AT NIGHT, AND OUR GRAND DAUGHTER WAS SLEEPING OVER, THE PHONE WAS ON ITS BASE IN THE KITCHEN. ANYWAY TO MAKE A LONG STORY SHORT, MY HUSBAND WHO IS ALSO A DOTING GRAND FATHER HAD CLOSED THE SAFETY GATE BETWEEN THE KITCHEN AND THE GREATROOM, THE PHONE RANG, AND I HURRIED DOWN THE HALL TO THE KITCHEN TO ANSWER IT BEFORE IT WAKES UP THE ENTIRE HOUSE HOLD. WELL, NOW YOU KNOW THE REST OF THE STORY. I GO PLOWING INTO THE GATE HEAD ON, FALL FLAT OF MY FACE, TEARING DOWN THE WOOD SLATTED EXPANDING GATE, IT SHATTERS INTO PIECES, AND CAUSES ME MUCH BODILY HARM IN THE PROCESS. I SAY MUCH, A FEW SCRAPES AND BRUISES, BUT THE MAIN THING THAT IT DID WAS TRAUMATIZE EVERY TENDER POINT FOR PAIN IN MY BODY, THUS, SO, I HAVE NOT HAD ANY RELIEF FROM PAIN SINCE, UNLESS IT IS WITH STRONG PAIN KILLERS AND MUSCLES RELAXERS. ~ ~ ~ ~ ~ ~ I HOPE THAT SOME ONE HAS BENEFITED FROM THIS PUBLICATION, AND I PRAY FOR THOSE WHO SUFFER, BECAUSE IT IS A LIFETIME THING. YOU LEARN TO COPE BY USING YOUR ABILITIES TO DO OTHER THINGS, LIKE WRITING, TALKING WITH OTHERS WHO ALSO SUFFER, BEING ABLE TO RELATE WITH SOMEONE REALLY HELPS. FOREMOST IS KEEPING YOUR FAITH AND YOUR TRUST IN GOD. |
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