Thursday, March 25, 2010

A Letter To The Enemy Within Me

Dear Fibromyalgia,

As I lie here on the couch, barely able to move, I can feel you twisting, grasping and pulling my muscles, contorting and twisting them into knots of horrific pain. My ribs feel as if I've been beaten and kicked, my head is throbbing, my jaws are tight and aching from the pain with which you are devouring my body. I can almost hear your sinister cackle each time I have to pull my body up from where I lie and shuffle, half bent over, to yet another bathroom break.

But as I lie here enveloped in your web of torture, I hear my little girl laughing from across the room....and I smile. You may think you've taken over my life, but I have news for have entered the body of a fighter.

Yes, you have changed many parts of my life. You sent me to the hospital, making me believe my heart was failing me. Your trickery of agony has brought me to a nervous breakdown and made me question my own sanity. You've sent me to the doctor, making me fear for my life, questioning whether cancer or some other fatal disease was attempting to take my life. You have even turned this drug hating, medication avoiding woman into a pill popper.But being the fighter I am, I didn't give up until you were identified as the illness that was trying to take my life from me. And the pills, hey, they silence you, they help me to sleep and they help me to take back the pieces of my life you are so blatenly trying to steal.

You see, I have your number, I know what you're all about and I know all too well how sneaky and underhanded you are. You try and take me down when I have things at home that need to be done. You wrack my body with pain when all I want to do is be up, out and enjoying the day. You lull me into this exhausted state where all I do is crave sleep.....but you see, the sleep only makes me stronger and more determined.

I will continue to smile and laugh. I will get up and spend time in the sun, my hands in the soil as I tend to my garden. I will take my little girl shopping, even if I have to stop and take a little break because you are screaming at my body with all of your might. I will play with my dogs, visit with my neighbors and continue to travel and fulfill my dreams.

You are an uninvited guest here. You are not wanted. You may think you have me....but you don't. You never will. I have been through far too much emotional pain and trauma in my life to just lie down and roll over to you. I have watched my child fight for his life and nearly die in my arms many times. I have protected another child from the dangerous hands of someone who claimed to love her. I have fought for the rights of disabled children and built a park for them when no one believed that I could. I have even set aside my own wants, needs and feelings as I handed over a newborn son to a deserving couple. I have seen some good things in life and I have seen many that are equally as bad. Compared to all of are nothing.

You, my dear Fibromyalgia, are a mere blip on my radar of life. I may allow you to slow me down, but you will never stop me. I will fight you every single day, with every fiber of my being and you.......YOU WILL NOT WIN. Never forget, you are not wanted and no matter how insistant you are, you still will not win.

You picked the wrong person to inflict. And you are in for the fight of your life. If anyone will beat you, it will be me. Because I am a fighter.....I never give up.....I never shut up....I never give in. I will win.

With hatred and disgust,

Your unwilling host,


Tuesday, March 16, 2010

Fibromyalgia + My "Type A" Personality = Chaos, Mayhem and Frustration!

Those of you who know me personally, know all too well that I am a self professed control freak....a type "A" personality. I like everything a certain way or I have a little meltdown. When things go awry, I morph into "fix it" mode....I run around like a chicken with my head cut off making phone calls, Googling things and scribbling notes in a notebook. I have strong armed county prosecutors, had medical interns fired and nearly pushed my ex son-in-laws car into rush hour traffic after chasing him through a Home Depot parking lot in my mini van.

When I got sick, nothing changed. I researched, read, Googled and spent hours on WebMD trying to pinpoint the reason for my body falling apart. Finally, a diagnosis came.....FMS..or Fibromyalgia Syndrome. SYNDROME. Definitely NOT a word a control freak (like me) wants to hear. You see, a syndrome, unlike a "disease" has no textbook set of symptoms because they vary so widely from patient to patient. GREAT.....not only is my illness making me feel like hell, it's not something I can contol by following a strick medical regimen or reading a colorful phamplet. It's wild. It's unpredictable.

The commercials you see on television about a certain drug to help control the symptoms of FMS is SO FAR OFF THE MARK! "Fibromyalgia is explained as wide spread pain that doesn't go away." Ummm, wow, what an oversimplification! You wanna know what FMS is really like? Step into my twisted world for a moment and allow me to explain.

Wide spread muscle pain: I like to call it, "Guess what hurts and win a cookie!" From day to day, I NEVER know what's going to hurt. It could be my head, my knees, my neck, my back, my arms, shoulders, ankles, jaws, scalp, spine, stomach, ribs, chest plate, hips, hands, fingers or toes. In addition to that, I get these incredibly unpredictable muscle spasms. I don't have to lift anything heavy, twist the wrong way or strain myself in any way. Just out of the blue, my shoulder or back or shoulder AND back will go into painful spasms. Sometimes it feels as if someone is reaching in and ripping my spine out through my skin. Seriously, no exaggerations here.

Other types of pain also happen and can vary depending on what sort of mood my FMS is in. It can be a dull ache, a sharp-shooting pain, a knife-in-the-head type pain, a burning sensation, a burning and itching sensation at the same time, needle pricks, sore and throbbing or stiff and painful with movement.

Other things that plague me and other FMS suffers (in Edie speak) are:

Morning Wood.......I get up in the morning and suddenly, I have no knee joints! My legs feel like the trunks of trees...they're heavy, stuff and achey. I walk around a bit looking like I have a stick up my butt and eventually they work themselves out and I again have knee joints. I also get morning wood in my back, arms, hips and shoulders.

The Potty Dance.....It never fails, I can be on my way out the door to a doctor's appointment, a shopping excursion or a jot to the mailbox and suddenly I have to squeeze my cheeks together and run to the bathroom.My tummy bloats, gets extremely gassy, rubmles, gurgles and decides on an hour by hour basis what it will tolerate. Some days, I get up, have my decaf and a little breakfast and all is well. Still other days, the minute something hits my stomach, my irritable bowel syndrome hits the big red eject button and a mini explosion begins to take place within my bowels. So please, don't get offended if you ask me out for lunch and I politely decline. IBS is nothing you want to take into public....especially if you;re like me and REFUSE to go number two in a public restroom. And if you happen to catch a foul scent shortly after I've had a meal, remember, the dog did it.

Sniffling, Sneezing, Snotting & Stuffy Fun......I've never had allergies. I could dance among the blooming spring flowers, roll in the grass and pet every kitty cat in the neighborhood....but not anymore! Oh no! In the spring, I sneeze over grass and tree pollen, flowers, weeds and anything else that tickles my nose. Summer, fall and winter are no better either. Dust, dust mites, name it, it makes me react either by sneezing and having my entire head clog up so I feel like my head is as big as the Goodyear Blimp or I begin to produce mucous like a fountain! Add to that the itchy eyes and scratchy throat and it's time for a Benedryl party!

I've got the flu.....PSYCHE! There is nothing worse than suddenly developing a fever, body aches, chills, nausea and extreme fatigue. When it happens you just know you've got the flu or some other nasty bug. But with FMS, you can feel like that one day and just KNOW you are destined for a week in bed with a box of tissues, a trash can within easy reach and terrible daytime television. But then guess what? PSYCHE, a day or so later, you're fine. This has happened to me quite a few times. My family actually thought I was harboring some sort of rare moneky flu that lay dormant in my body and would pop up once a month or so.

The Morning After Glow.....This happens after a beautiful night of making love......or mopping the kitchen, weeding the garden, walking around the block or shopping for an afternoon. I will wake up the next day feeling as if Jillian Michaels has been working me out for a solid 7 days with no break. Every muscle in my body is sore...and not just sore, BRUISED. Don't touch me! Trust me, I will cry like a toddler! it hurts to move, it hurts to sit, lie down and if I have to sneeze, that's all she wrote!

The Faux Heart only takes three or four visits to the emergency room before I realize that I'm not having a heart attack. I'm actually having nonspecific chest wall pain. Damn sure feels like a heart attack. And when I'd have that pain in my chest, of course, I freak out....I get anxious, sweaty, clammy, dizzy, nauseous and....look those symptoms up and see what you get! Heart attack! But nope, it's just FMS's way of letting me know who is in charge.

And let's not leave out the other fun things that FMS has brought to my life......

Fibro Fog (I lost the keys AND my ass and by the way, who are you again?)

Gritty being lost in the Sahara Dessert without ever leaving the living room. A cool way to travel the world...not.

Mood Swings.....woo hooooo, this is fun, no, I'm bored. WTF are you doing breating in my space?! Heyyyyyyy, I love you!!

Irritable Bladder.....gotta I don't....gottta pee.....never mind....OH! I really gotta pee!

Insomnia.....I watch ALOT of late night TV. Never realized there were so many "little people" shows. And some of those cable channels get pretty riske' after midnight!

Sleeping beauty....the only time I don't have pain! And I can sleep until noon, maybe later! Try me!

Chronic Fatigue Syndrome...I wake up, but can't get up, can't stay awake, can't do anything! Or I'll be fine and suddenly, it hits me and I crash....can't move, can barely lift my head. Oh no, gotta pee again! No, I don't.

The Carnival Dizzies
....what fun to have a carnival ride in my own head! I can spin while watching television or typing on the computer and if I want a really wild ride, all I have to do is get up really fast! Sometimes I see colors and stumble!

Numbness fun.....this is a doozy! Sometimes my fingers will tingle and my hands will go numb. But that's not all, my feet will do it too! And when my shoulders and neck spasm badly enough, my neck and face will go numb too! Go ahead, poke me, see if I feel it!

FMS Headaches.....these are such fun. They start at the tender points in my neck and shoulders, they then shoot up my neck, into my jaws and radiate into my scalp. Sometimes, on really special days, I get stabbing in various areas of my head.....without headache pain too! I must look like a nut walking through the Dollar Tree and suddenly grabbing the top of my head and saying, "Ow".

Anxiety and Panic.....YES! The disorder that threw me into the ER (along with the faux heart attack) and led me on the road to diagnosis. Anxiety starts with that little tingle in the pit of your stomach and then the brain takes over..."OMG! That pain in my it a brain tumor? it could be. Maybe I should Google the symptoms. OMG! Now I'm short of breath and my heart is skipping! I'm short of breath, having a heart attack and I have a brain tumor!" Before I know it, I'm sweating, chilling, pacing the floor, the room is spinning, I can't think, I can't talk...I'm trembling from head to toe. This can happen any time, any home, in the car, at the just never know!

Tummy addition to the IBS and bowels from hell, I get tummy aches. Indegestion, heart burn, bloating, gas and nausea. The nausea is fun....can happen at any time and for no reason. All I can do is grab and little trash can, line it with a grocery bag, lie down and hope to keep my lunch.

Itchy, Scaley, Scratchy......ahhhh yes! No it's not jock itch or scabies.....just my irritable and sensitive skin.....which I never used to have. Winter is the worst....I get little itchy patches on my arms and face. I must look like I have Bolgarian Body Rot or something cuz I feel like I'l always scratching.

Bye, bye vision......suddenly, I can't read whether the Hamburger Helper box reads 1/2 cup of water or 1/3 cup of milk. Newspapers can only be read by the window and at arms length. Paperback books....hahahaha...forget it. I have about 8 pair of cheapie reading glasses I picked up at Target. I NEED those now or else I'll end up taking 13 tablespoons of cough syrup every 2 hours.

And I can't leave out breast pain, hot flashes, night sweats, feeling as if things are swollen, dental pain from grinding my teeth, inflammed ribs and breast bone and a host of other things I'll remember when they rear their ugly heads once again. I'm just a walking party, aren't I??!! HA!

The cool things about Fibromyalgia....I got a cool, new, technologically advanced heating pad with 4 heat levels and an automatic shut off! I have a nice selection of stick on heating pads that usually end up on my back or shoulders. I now have my own personal pharmacy that includes anti-anxiety drugs, muscle relaxers, allergy tablets, nasal spray, analgesics, anti-inflammatories, acid reducers and rash creams. I drink a killer herbal tea to help me sleep and my husband is actually considering a newfangled air type matress for us so I'll stop sleeping on the broken down, extra soft and cushiony couch. I'm also going to get glasses soon and I'm looking into massage therapy.

When people ask me how I'm feeling, I know that they care.....simply because they know that question could bring on an onslaught of complaints and whining. When people don't understand how I can be so sick, but look so "normal" it makes me frustrates makes me cry. I wish everyone could understand that FMS is a real illness that makes the sufferer miserable. I wish everyone would understand that when I'm up, out and about...or if I'm happy, laughing and smiling....I'm having a really good day with tolerable pain or occasionally no pain at all. Those are special days! I just wish everyone would take the time to read tell their friends.....and to be aware. FMS sucks. I can't control it and I hate that the most. from day to day, hour to hour, I don't know how I'm going to feel.

As I close this essay......I'm kicked back on the couch, computer in my lap. My vision is hazy partly from eye strain and party from the 2 muscle relaxers I took an hour or so ago for left shoulder-chest pain. It still hurts when I breathe, but the meds are helping along with the Therma Care heat wrap stuck to my shoulder. My neck is sore, it hurts to move it and I have a bit of indegestion from the burger I had for dinner. But bedtime is soon and whether I sleep right away or three hours after I lie down, it's something I look forward to. With sleep, I feel no pain. I'm just Edie again, dreaming about what it was like to be healthy and pain free.