Tuesday, February 28, 2012

I Am Sick

I said that to my husband the other day. "I am sick." He is well trained to say, "I know." But I answered back, "No, I mean real sick, the kind you or other people get." To which I was given a curious look. "You better not let a person with Fibro hear you say that," he said. I laughed because I had not realized how I said it. I was trying to inform my husband there was something extra wrong with me that he could relate to and give me sympathy for. Because he has experienced it, everyone has. See I was not just extra Fibro-sick, I was sick sick, like a cold or flu sick. Somehow in my casual lingo that translated to "real," when here all I do is fight tooth and nail for Fibromyalgia to be considered real, because oh it is so very real. I was surprised by this statement and really examined what it meant. Do even I still hold prejudice against myself for "only" having Fibromyalgia? 

There has been many a time and many a patient who have complained people just don't understand what it is like to have Fibromyalgia. They don't understand the disabling symptoms, psychological torment, inability to function. They have no clue what it is like to have a chronic illness every single morning when you wake up, for every single minute of every single day for foreseeably the rest of your life. It never goes away and permeates every single aspect of a person's existence. And unless you have experienced something of this magnitude you definitely don't understand what it is like.

But do you really want them to? Because if they understood they would have it, experienced the hell of it, know it first hand. And I know I personally would not wish this on my worst enemy, let alone someone I loved, cared about or knew. I think back on who I was before I got sick and there was no way I would have even begun to comprehend what this is like. We are doing the best we can, sick as can be trying to get anyone to accept how serious it is. Spreading awareness and firing doctors who diminish our illness. One small painstaking step at a time to make life liveable again. Stay strong my friends, and take heart in knowing their inability to understand means they have not suffered the way you have. Then try and find a way to not want to kick them in the teeth because of it.

Thanks for joining,

Friday, February 24, 2012

Are You Ready For The Fight Of Your Life?

That's what it took me to have anything resembling a quality of life after Fibromyalgia knocked on my door and wormed its slimy miserable self into my life. This is what Fibromyalgia taught me about itself:
1) It will not kill me, no matter how badly I want it to
2) It will take everything from me if I let it
3) There is a significant amount of self-pity, fear & depression I had to go through to begin to see clearly
4) This is absolutely something the 5 Stages of Grief applied to, but my order was a bit different:
  •  DENIAL- Doctor after doctor telling me there is nothing wrong with me and it's all in my head, and part of me believing them because this makes absolutely no sense.
  • BARGAINING- With myself to just get over it already! And with those I love, work with & am friends with to understand what is happening is indeed real. 
  • DEPRESSION- Because this is real and I am no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and pure unbearable pain take over. If that's not depressing I don't know what is.
  • ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
  • ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I am not giving you any more of me. So if it is the last thing I do on God's green earth I will get something close to a quality of life back...
And that is when it really got interesting. Without the fight, without the anger, I do not believe I ever would have recovered to the point of "managed".  I could not comprehend how at the age of 28 the rest of my life was going to be spent a disabled invalid. But how does a person that is in so much pain find fight? How does someone who has been broken down, beaten and pulverized into mush re-construct their mental fortitude enough to insist on repairing their broken body, soul and psyche? Getting Fibromyalgia managed was without a doubt the hardest thing I have ever gone through in my entire life. The disease itself is bad enough, but the doubt and lack of compassion from the world at large creeps deep into the heart of a person and inflicts wounds so broad and scaring they are darn near impossible to recover from. As a person looses their ability to work and support themselves, parent their children, engage with their significant other, maintain friendships, perform basic duties (like showering and making the bed), participate in a social life, laugh, play or love, the despair and hopelessness can swallow you whole! 

There were people who criticized me harshly for stepping outside the confines of modern medicine and embracing a holistic approach. Those same people would be sitting here doubting the validity of my illness today if I were still that crumbling, quivering, unable to function mess of a woman. But I am not. I charted my own course, forged ahead, learned how to stop giving a rats-woo-ha about what anyone else thought. I ceased to look for acceptance and approval where none was to be found and clung to strength and hope I did not know I possessed. I grabbed my life, shook it silly, believed in myself and forged on to build a better tomorrow. I kept "interviewing" doctors until I found one that believed me and listened to me. I let the world know I was  hurting, but working on making it better. Projected a life of confused sanity, not sloppy despair. My worst doctor appointments were the desperate ones. The ones where I went in crying, needing, forlorn for help, only to be dismissed and turned away. See they don't know what to do with us, we are messy and complicated. Our diseases are too new to their scientific realm so therefore are dismissed. But let me ask you one question. Will medicine or science ever progress or discover anything new? Of course it will! And one day we will be understood. Till then, do the best you can, love yourself and believe in a better tomorrow, for if you don't it will never come.

Thanks for joining,

This blog was originally published on 8/27/10.

Thursday, February 23, 2012

Guilty As Charged

I am quite upset about something relatively minor in the grand scheme of life, but still kinda a big deal to my here and now. Last fall I got one of those photo-radar tickets everyone is in such an uproar about. I was speeding my way home from getting my blood drawn and they nabbed me. However, I did not receive this ticket in the mail until this January. Well I sure learned what that uproar everyone was all upset about is, considering the date for me to have addressed this matter had long since come and gone. After verifying there was not a warrant out for my arrest I petitioned the court for an extension to complete traffic school and it was granted. And then I proceeded to spend the last month, much like most of my months since I had the strokes, flipping inside-out and upside-down about every single challenge, big and small alike, I encounter on a daily basis. 

By the time I looked at the paperwork from the court close enough I was within seven days of my court date, and I didn't even know they did this, but traffic school would not let me attend! So I flipped. Kinda. Because I realized all the flipping out I have done in the last month over issues which either work themselves out or go on to become what they are, well, its distracted me from doing something quite important. Going to traffic school! This made me sad. And mad. At Fibromyalgia, me, my life, my many other sicknesses, our financial issues, familial issues, marital issues, pretty much everything that has taken precedent over me taking care of me. Or more to the point, I have allowed to take precedent.

So I made a decision. To pick myself up by the bootstraps of my big girl panties and deal with it. Pay the fine, take the hit on my driving record and not freak out. The world will not cease to orbit on its axis over this one. I know I can't go head to head with a judge to get it extended because I really have no good excuse, or one that would not raise question to my right to have a drivers license in the first place. So it is today I truly learned the meaning of the phase choose your battles. I don't have a toddler or teenager to have taught me this lesson already, and quite frankly in marriage think it only leads to resentment. But I have not been picking my battles in life. I have forgotten how to roll things off my back, not take everything personally, ignore the bullshit and laugh in the face of absurdity. You know, not sweat the small stuff. Because at the end of the day very few things are not the small stuff.

Thanks for joining,

Tuesday, February 21, 2012

The Little White Pill

One cold and painful night, many many moons ago, I stood staring at the little white pain pill sitting on the counter top laughing at me. I needed the pill, for I was in pure physical agony of the kind only Fibromyalgia can deliver. But I lived on the pill in order to get through work and life and quite frankly, it sucked. I was moody, bitchy, short-tempered, nauseous and constipated. And those were my good days. There were days my pain was so bad I could not take enough to damper it and still expect to live. So on top of being moody, bitchy, short-tempered, nauseous and constipated I was also in writhing misery. Fire coursing through my extremities. There were days off of work where I simply could not take the pill that day, just could not take the side-effects, and condemned myself to lying in bed sobbing at the torturous injustice of it all for twelve hours straight.

Oh yes, that little oval Percocet and I danced every dance, boxed every match, battled every tune. When I was healthy prescription narcotics were something a person took for a short while after surgery or a car accident. Anyone else was thought of as "dependent" or sometimes more specifically "an addict". Judged and condemned without need for an explanation. So how on earth did I find myself at the age of 30 going through over 100 of these nasty little bastards a month? Me? How? I was a party girl in high-school and college but that was long behind me and this was certainly no party. I was an adult with a career and husband and a life full of promise and potential! At least before this pain started I was.

Well the more determined I became to not need the little white pill the more I needed it. Oh such a lose-lose situation, no winner allowed. One of my driving forces behind getting Fibromyalgia "managed" was to get off these suckers. I was living a dulled-out, vacant half-life but also needed to work to support myself. Believe it or not moody, bitchy, short-tempered, nauseous and constipated accomplished working a job far better than unmanaged Fibromyalgia pain did. And I learned a thing or two along the way. The more you take, the more you need. Narcotics create more pain receptors, actually increasing the pain. Hence the need for a larger dose, ie. addiction. I also learned when taking a medication prescribed for a condition by a treating doctor a person is not an addict. I was worried about this one so I asked my doctor. He asked me if I was breaking into cars to steal stereos to pay to obtain drugs illegally off the street. When I answered no he reassured me I was not addicted. I also learned living on them for the rest of my life would most likely severely compromise my internal organs and shorten my life. So I set about figuring out how to get off them. I don't take anymore than a few pills a month for severe breakthrough pain these days. Whenever I wake up the next day I thank God I don't have to live on them anymore. I also learned I would have never gotten here, not needing them, without them. They were part of the treatment plan that got me here. In so many more ways than one.

Thanks for joining,

Friday, February 17, 2012

Getting Off Cymbalta

Cymbalta is without a doubt one of the worst medications I've had the horror of coming off of. It was prescribed while I was in the hospital during my last pancreas attack in 2007 to combat the pain I was using Percocet to manage. My hospitalization was an awful experience over all. Then a few days after starting Cymbalta, I felt this sticky sweat cover my body. It made me feel gross and clammy. I was in the hospital for six days and thought it was being there that was inducing that nasty slick. But upon returning home, I could not get away from it. I could not sleep without waking up drenched, constantly felt dirty, and was sweating out of my head profusely.

That one was really helpful for good hair days. One evening while at my aunt's house for dinner, I had to blow dry my scalp three separate times because my head was soaked. I looked like a menopausal, wet dog sitting at the dinner table fanning my head while everyone stared at thirty-one-year-old me. I was not aware this was a documented side-effect of Cymbalta until I was perusing through Prevention magazine one evening and started reading the fine print on the drug's advertisement. It was like a light bulb went off. So that's what all the sweating was about!

I suppose it helped with the pain, although there wasn't a marked difference and I was still taking narcotics daily to get through work and life. Desperate for anything to damper the throbbing, stabbing, aching fire that coursed through my body, I stayed on the drug for two years. Eventually my pain was managed with high doses of Lyrica. Thanks to my doctor's refusal to prescribe, I was off Percocet entirely.

But I gained serious weight while being on those drugs. More than fifty pounds. My complaints to my doctor fell on deaf ears. I was paranoid I was going to have another pancreas attack. He told me I would never get off Lyrica or Cymbalta. Instead, he instructed me to go on a medically supervised starvation diet and gave me a referral to a bariatric surgeon. Whoa! Are you kidding me? Get my stomach stapled because he had no idea how to treat my conditions and didn't want to prescribe narcotics? Sadly this was not the first time I realized "do no harm" was decidedly not at play for this chronic pain patient.

So I went on a holy quest to get off as many medications as possible. I blamed them for my weight gain and feared the consequences a lifetime of taking prescription drugs would have on my organs. Cymbalta was my first attack. I tapered down to half a dose. After about a month I stopped entirely. Oh, I really should've cut the half in half, but it was a name brand prescription and too expensive.

Well, shortly after stopping, I started feeling withdrawal symptoms I can only assume are like coming off some hard-core drug. Inside I felt like a telephone wire cut in half by lightening, whipping and snaking in the air, cracking electricity with every contact. It would course through my veins and cause me to twitch and tremble. I felt like an eel, a shorted wire, a wet plug, in a word ELECTRIC.

I was moody and grouchy and angry and frustrated and negative. Emotional garbage came pouring out as I became consumed with every injustice ever inflicted upon me, intentional or otherwise. I cut off contact with family and friends. The pure anger oozing out of me was so great, I couldn't differentiate what was real and what was a magnified perception from the withdrawal. I sat at my computer and wrote and wrote and wrote, getting it all out, feeling justified and victimized and wronged. I became extremely negative at work and borderline suicidal. I started seeing a therapist again because I was fearful of my actions without honest accountability to another person.

What I glean now from this experience is Cymbalta was masking psychosis from Lyrica, and once I was off Cymbalta the full experience of Lyrica took over. At this point I'd fired Dr. Stomach Staple and was with my new doctor at the Mayo Clinic. She upped Welbutrin to help my anxiety and quickly switched me off Lyrica and back on Neurontin (gabapentin). I began to feel better emotionally and mentally, but of course never anything easy, the pain came back. I started loosing weight, though. Guess I didn't need that bariatric surgeon after all.

I have tried darn near everything out there to manage this disease that is so unbelievably destructive to living a decent life. Drugs, diet, exercise, supplements, acupuncture, more drugs, stress management, lifestyle management, disability, physical therapy, more supplements then anyone could possibly imagine, working barely part-time, more drugs, rearranging my priorities and expectations, moving to a warm-weather climate, serious sleep management... Oh you name it, and I have tried it.

And my fibromyalgia is managed! I can work, love, laugh and savor a little. No, I'm not the woman I was before I got sick. But even though I had my physical health then, I am much more mentally and emotionally full now. I am clear in mind and conscious. I know what I need out of life, where to put my priorities to get it done, and what to just plain ignore because it will do nothing but suck me down. We are all different and each fibromyalgia patient must keep trying until they find the right combination of lifestyle and medical management to get their life back. But as for me, Cymbalta, we are broken up, never getting back together again, and I am sorry I ever met you!

Thanks for joining,

Originally published in August of 2010

Thursday, February 16, 2012

S#%t And Sleep

Communicating with Fibromyalgia patients and observing the many stages each and every person goes through as they navigate life with this nightmare of an illness triggers major flashbacks for me. Different people, varying root causes, separate co-mingling conditions, but we all experience the pure misery of a sickness they don't know why we get and certainly don't know how to cure. Little lightbulbs like the twinkling dance of blinking Christmas decorations pop off and on as memories long forgotten rise to the surface of my conscious. Time and time again I answer a question with, "Holy shazam, I totally forgot about it but that happened to me too!" Two major issues impeding my ability to get Fibromyalgia managed were my sleep deficiencies and, ahem, bathroom problems.

I was a small little person trapped between two big thick walls crushing together. The walls of life and sickness. They did not get along, could not meet in the middle and made mincemeat of all unfortunate enough to be caught in their path. I was finally crushed to smithereens between them on September 6, 2006. Raging insomnia, excruciating pain and mental anguish consumed me. I cancelled the sleep study it had taken a whole year to obtain a referral for because I broke down. Bad. I saw no point in living. Same reasons I have gone over in every other blog; anger, pain, frustration, sickness, guilt, panic, fear...it goes on. I was free-falling and the deeper I went the less I cared enough to hang on, the less there was to grab at. I was not suicidal, but it was the first time a complete and overwhelming loss of hope rationalized the will to live as unnecessary. It took a breakdown of this proportion before I finally took this illness seriously, accepted it was not going away no matter how much I willed it to, and it was up to me to figure this out. I got the medical help I needed and started sleeping. And I dreamed! It had been years. Many years. But suddenly strange, odd and sometimes disturbing visions filled my nighttime slumber. My unconscious had found its filter and and trapped images exploded through my brain and out my head. I know now that sleep disturbance, unrecognized by me and medicine alike, was the shotgun at the start of the race to the Fibromyalgia finish line for me, genetics notwithstanding.

So I was sleeping and doing a lot better, but still not well, at all. I was constricted. So stiff, puffy, painful to the touch. It felt like one gentle poke would burst my skin open like an overstuffed sausage casing. I was on Lyrica and gaining 10lbs. a month. Full of toxicity, distorted, swollen, grogging through quicksand, my digestive system was free of the candida imbalance which caused IBS but was still not function properly. I went to dinner at a friend's house and her mom was going on and on about getting a colonic. It dawned on me all the drugs I had been on, dead sickness inside me, the fermented toxins settling in my cells and tissues, none of it had a way to get out. But I was not quite ready to have somebody stick a  tube up my butt to suck it all out either. I did many cleanses, got off the drug obviously not fit for me and started eating healthier, even walking again. Vegetables were good, psyllium husks even better. Slowly but surely as I cut out processed foods my stomach stopped swelling after every meal and elimination became regular. The puffiness came down and there was a marked difference in my quality of life. Now I was sleeping (repairing) and eliminating (toxicity removal) and the energy in my body was flowing. At this point I could actually move forward with the many other layers of healing my dear little central nervous system required. I was now free to set out to repair everything else it had demolished on its way to breaking down.

Thanks for joining,

Tuesday, February 14, 2012

Assessing My Priorities

"I never think of the future. It comes soon enough." 
-Albert Einstein

Some family came to town this past weekend. We had fun, hanging out and catching up and laying by the pool drinking Moscow Mules. Oddly enough, as we relaxed and unwound, I was a bit surprised to discover I was not fighting with my husband. At all. Which was a bit unusual considering that has damn near become our default these last few months. As that tightly wound ball of stress, expectation and self-flagellation relaxed and unwound inside me I realized there was a marked difference in my perceptions and reactions. Because I was not stressed out! The more relaxed, and quite frankly myself, I became the more I noticed a massive disconnection from the person I am, and the person I have become. As the weekend ended we bode our fond farewell and came back to our life. I was determined to maintain this awareness and figure out how to change my reality. 

But Monday morning came, as it eventually does, and I was horrified to wake up the same me I have been lately! My reality and expectation and stress was sitting there waiting for me. Nothing had changed. I just had a little break and wanted more. So of course I dived in head first, for that is what I usually do. But I whined all day about how my reality and me, we are stretched too thin! I am overcommitted. I am doing too much. How do I change this? What do I give up? These thoughts whirled around my head all day as I fought with my hand, arm, shoulder and neck to release the vice-grip of shooting pain they were paralyzed in, rendering me unable to type. I got so frustrated I just took a nap, knowing all this would be there for me when I woke up, but hopefully I would be in a better mood.

Finally I gained my perspective. I am stretched too thin, way too hard on myself and have too much on my plate. But I am not willing to give any of it up. I blog, am writing a book, proudly run The Fibromyalgia Crusade and of course admin The Fibromyalgia Fun House on Facebook. That takes up an awful lot of time. I am also a full-time housewife, puppy mom, patient and last but not least a girl that cares about my appearance. But I have to figure out a way to not be so uptight and miserable, stressed out and racing around getting nothing done because everything feels like it is crushing in around me. And finally the light bulb of my brain lit up and I realized how to do this. Keep my hands in all these honey pots without going completely nuts. I need to slow down! I can still do all of this, I can. But it's just going to take me a lot longer to get everything done. Back in the days of yore when I was in interior design school I learned clients want three things. Fast, inexpensive and quality. And any designer worth their salt would inform the client two are possible. Fast and quality? It's not gonna be cheap. Inexpensive and fast? Don't expect marvelous quality. And inexpensive with quality? Oh it's gonna take a long time. I, my friends, am okay with it taking a long time. I just need to go mediated now to re-learn to live in the moment, not spend today obsessing about what might happen three days from now.

Thanks for joining,

Friday, February 10, 2012

Back To Life, Back To Reality

Last night I had a vivid dream I was filing the freckles and sun-spots off my body with a fingernail file. This reminds me that I need to see the dermatologist for my annual once-over for skin cancer (Arizona can do that to you), need to make my annual female appointment and basically get back to tending to my life. It has been ignored as I have stroked, Prednisone-freaked and blog-obsessed these last few weeks. I am taking Flexeril to keep myself calm and from spinning out into a steroid-frenzy, exhausting my body with activity spurred by energy I do not own. It is making me groggy and foggy. Manic and headache-inducing or groggy and foggy, why are those my only choices? 

A whole new world has opened up since going "live" with my blog only seven days ago. The response has been overwhelming, and as I connect with so many beautiful souls, each absorbed in their own layer of process with this illness, I am touched, honored, reminded and renewed to keep going...keep on keepin' on. I set goals in my life I am no longer able to keep since the strokes. Although sorely disappointed, I am trying to be compassionate towards myself. Not only is there no immediate masters program in my future, I don't even feel comfortable taking two classes so I have dropped down to an easy conversational Spanish class solamente. I could not make it to puppy training class last night, layering yet another burden of responsibility on my overworked, overwhelmed, stressed-out husband. I need to pay the bills and get my thank you notes out and do laundry and get back to cooking dinner at night and stretching every day and going to bed early and managing our household and still somehow find a way to rest and renew. And I really need a paying job. Ahhhhh!

I saw my psychiatrist yesterday. He is taking me off the SSRI, given the possible link to RCVS's unknown etiology. I told him I only want to take "old" drugs, with years of documented side-effects. I simply do not trust the new ones. The flip side is I am now on eleven prescriptions. Half of these are to combat the side-effects of the ones keeping me alive. Absurd! I am not allowed to take my customized cocktail of supplements due to unknown interactions with the steroids. But I keep having these horrible viral flare-ups and my immune system needs a major prop-up. So I am sneaking a few anyway. Just reviewing all this, taking a moment to ponder the snapshot that is my life, I am overwhelmed with what is actually happening to me and understand the need for rest and relaxation. I will survive this, yet again another psychotic round of prescription drugs and scary medical conditions, and will get to the other side. But as my brain sits in a fog and my leg and foot will not stop bouncing a mile a second, my hands shaking uncontrollably as I type, I understand the crazy juxtaposition I am in and think I am going to take a nap. Yeah right. Where did I put that bottle of Flexeril anyway?

Thanks for joining,

This blog was originally published on 8/18/10. A year and a half and nearly 110,000 hits later I cannot imagine my life without this blog and the amazing people I have met because of it. Thank you, friends and readers. You have given me a purpose I did not know I was created for.

Thursday, February 9, 2012

Help Me Miss Clairol

Last night I got all up in my magnifying mirror to pluck some eyebrows and wax some upper lip hair. WELL let me tell you how horribly awful that experience was. The latest shingles outbreak I have been battling showed up in such a lovely place, my chin. So there is a dry, flaky, red rash covering it. I have tons of tiny blemishes from hormones or eating sugar or I don't know what competing with my freckles for facial space. Those sweet age spots are enlarging, crows feet deepening, oh it was not a pretty sight. But as I shook my head in dismay and critiqued myself in high definition the piece de resistance revealed itself...I have blackheads on my nose! Now clogged poors I am used to, but not something as dark and obvious as...a blackhead.

I got pissed. This is not life threatening, causing me pain or shortening my life. But it still sucks. And still represents another aspect of how Fibro infiltrates every part of your life. When I was working I had the money to go get a facial. Now I don't. So feeling old and unattractive, this morning I got up, dyed my increasingly graying roots blonde and painted my cracked and chipped toenails. The repetitive motion of applying the dye to my hair exacerbated the pinched nerve in my neck that causes immeasurable shoulder, arm and hand pain and near paralysis. Painting my toenails was nowhere near better. Keeping my hand forcefully gripped to roll my foot evenly in front of me was agony on my hands and hips alike. But I got them done. At this point it was exacerbating my pain quite profoundly, though.

So here I sit with pretty pink toenails, blonde growing out of my head with a face void of unwanted hair. In far too much pain to actually get dressed, put on makeup and go anywhere. But I am not going to stop caring about my appearance. Not now, not ever. It is who I am. I sold face cream and did makeup for nine years. I wore makeup in high-school (as poorly applied as it was), dyed my hair everything from platinum to fuchsia to black. When I was a little girl I used to play with my mother's makeup and fancy gowns. Big circles of red cream rouge drawn on my cheeks by a child arm stacked with glittery bangles. For goodness sakes my 95 year-old grandma still wears makeup and paints her toenails! It's damn near programmed into my DNA. I have given up so much for Fibro. It's depressing when what the "me before I got sick" could do before she went and worked a nine hour shift takes all day and causes so much pain. But what I really should be doing is pacing. A little bit each day. Hey I have managed to have a clean bathroom for two weeks that way!

Thanks for joining,

Tuesday, February 7, 2012

Restless Sleep Syndrome

The other night my husband was lying in bed playing with his phone and I was washing my face, on my way to join him. He asked me what restless leg syndrome is. I said, "You know how I wiggle around and move every 30 seconds?" Yes, he knew. "Well it's like that but like 50x worse," I answered. Then he informed me because of my late nights and the horrible hours I keep I am impeding his sleep. The way he chose to tell me this was by hollering out, over the sound of running water splashing my face, "Well I have restless sleep syndrome, and it is all your fault! Yorkie and Porkie do too! It is a terrible condition that affects men in their 30's (my husband is 35) and dogs from ages 2-6 (Porkie is 2, Yorkie is 6). When you don't come to bed at the same time we do, well, we can't sleep!" Now restless sleep syndrome is not a medical condition or diagnosis, but was purely invented by my husband who clearly has illness envy. We giggled and laughed as he teased me and I hauled the laptop to bed in an effort to not exacerbate my dear husband's horrible restless sleep syndrome.

When I first started blogging I did not know the difference between a disease and a syndrome. So many things are attached to the word "syndrome" that are completely ridiculous. Years ago, when I was trying with all my might to get a diagnosis for this horrible pain and fatigue I was suffering from I became aware of a phenomena known as "white coat syndrome". See every time I went to the doctor my blood pressure was high, but at the end of the appointment it was fine. Well apparently this spike in blood pressure during a doctor appointment was common enough it had earned itself a name. Quite frankly the future of my life hung in the balance of the outcome of each doctor appointment. I was not at all shocked my blood pressure spiked from nerves. I was also in pain and that alone raises blood pressure. But I was not willing to go on blood pressure medication because I did not have high blood pressure! Or at least when I was not at the doctors I didn't. A few months back my mother was trying to find a home for a black dog she rescued off the streets. She told me about something called "black dog syndrome", where it is harder to find homes for black dogs than dogs of any other color. Now this is indeed true, it is harder and quite well known about in the rescue community. But the use of the word syndrome in this instance was frivolous, and knowing full well what it means by now, I hit the roof. 

See Fibromyalgia is a "syndrome". The condition that caused my strokes (RCVS) is a "syndrome". Hell even SIDS is a "syndrome" (Sudden Infant Death Syndrome). And AIDS, oh yes, AIDS is indeed a "syndrome" too. All the word syndrome denotes is, "A set of signs and symptoms that tend to occur together and which reflect the presence of a particular disease or an increased chance of developing a particular disease."* That is all. It does not mean it is not real. It is not imaginary or make believe or fantasy. It simply means they don't know the cause of a specific set of symptoms but the same symptoms are prevalent in enough people to assess there is actual illness causing these symptoms. So they give it a name and slap syndrome on the end of it and set out to research the cause of these symptoms. Sometimes they find it, as in AIDS, the cause is HIV. But sometimes they don't. Or it takes generations of patients morphing into an epic health crisis to really push them to source the root cause. The word syndrome will continue to be used in the medical community to denote an illness of unknown origin. And it will still be used by society to label things they cannot explain. But please, my friends suffering with Fibromyalgia Syndrome, don't think for one second your illness is any less real than a stroke-causing, baby-suffocating, deadly virus. It is not killing us, but man oh man is it real!

Thanks for joining,

Monday, February 6, 2012

The Butterfly Affect

The butterfly is embraced as a symbol of Fibromyalgia awareness. Soft as breath, nearly weightless, it is an excellent allegory to the impact even the lightest touch has on a Fibromyalgia patient. When a fellow Fibrate states hugging their child hurts too bad they can't do it, it breaks my heart. A major symptom of Fibromyalgia is sensory sensitivity. Not only touch, but sound, sight, smell, taste and feelings at times can all become extremely oversensitive. This is a real symptom, but is often discounted. When my husband says something unoffensive in a short tone and I burst into tears, I know that whatever Fibromyalgia neurologically does to exacerbate sensitivity, well, it's happening to me. Same with five people talking to me at once, music I don't like playing way too loud and the immediately necessary removal of the bra I am certain is cutting and burning into my flesh, making my skin crawl. 

But our little butterfly suits us, friends, and in more ways than just a symbol of sensory sensitivity. There are four stages that complete the total life cycle of the butterfly. First, mom lays the egg. The egg grows into a caterpillar that looks like a colorful worm. As it grows it sheds it's skin a minimum of four times to accommodate the new growth of its increasing size. Then the caterpillar forms itself into a pupa, a fuzzy sack of rapidly forming growth not visible from the outside. But a metamorphosis is happening still the same. As the adult butterfly emerges from the chrysalis a miraculous transformation has occurred. A winged beauty flies away, off to pollinate flowers, mate and lay it's own eggs, continuing the circle of life.

I can tell you I was not a very pretty picture when I got sick. A tiny egg with a huge job ahead of it. There were certainly four sheddings of my former skin required to strip me of the garbage from my past, at least. And there was a time of retreat, where the world was shut off and internal mountains were moved. Eventually that day came when I too was ready to fly away and find life again. We live in an instant society. Many are fortunate to have what they want before they even know they want it. But Fibromyalgia is at direct odds with this on-demand lifestyle. Modern medicine can hardly treat the symptoms, let alone have knowledge of the cause or a possible cure. But I believe, based on my experience, I would not have emerged strong and victorious from my Fibromyalgia journey if I did not allow the life cycle of being sick, losing everything, standing up on wobbly legs and putting one foot in front of the other until I was running again, ready to fly into my infinite unknown. I have done nothing harder in life, but can tell you beyond the shadow of a reasonable doubt I would not be who I am today if I had not gone through this painful metamorphosis. Life is richer, less complex and far more precious than I ever imagined.

Thanks for joining,

Friday, February 3, 2012

Do You Know Why The Caged Bird Sings

A free bird leaps on the back of the wind
and floats downstream till the current ends
and dips his wing in the orange suns rays and dares to claim the sky.

But a bird that stalks down his narrow cage
can seldom see through his bars of rage
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied so he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

~Maya Angelou

Oh Maya, my inspiration, my hero! You flow so poetically with the poignant truths of life. You are a revelator, your frank honesty and raw descant of an experience imprisoned in time and place. You have broken free from the chains that bound, tried to keep your brilliance down. You lead a life of truth, dignity and pride. Thank you for your courage, thank you for your voice.

So many of us Fibromyalgia sufferers, chronic pain sufferers, unexplained illness sufferers, sit in silent misery. We are unable to communicate to the most brilliant doctors or closest loved ones how horribly awful it is to be locked inside a body racked with pain and sickness. We are usually blessedly cursed by not looking sick. No, we may not look as good as we once did, but most are not wheel chair bound, wasting away to 90-something pounds, hair falling out, skin peeling off...you get my drift. So we do not get the immediate and compassionate sympathy of others. In fact, more often than not, it is the complete opposite. 

"What do you mean you can't make it to Father's Day, 4th of July, Christmas Eve?  Why can't you go to work today? Why is the house such a mess? Why don't you cook dinner anymore? Where are my clean socks? Why are you always sick?" 

Oh many of us have heard it all. The guilt associated with letting down those we love, having to protect and take care of ourselves while fighting for our right to be sick. It makes it all the more devastating, as doctor after doctor can tell us we are fine and healthy and just need an attitude adjustment, therapist or anti-depressant. Or my personal favorite, more exercise. It is a battle fought against yourself for yourself, and that is just so damn hard to take!

But let's step back from the immediacy of our own reality and recognize that "imprisonment" has been going on for thousands of years. Since the beginnings of humanity. And people have been fighting it and winning the entire time. Slavery, oppression, captivity, servitude, thralldom. We get peaks into the survivors, the Life Is Beautiful moments in time where an exceptional person will not let their circumstances get them down. It is possible. Really freakin' hard, but possible. When I was at my sickest the sheer horror of my quality of life flushing down the toilet in front of me made me fight against it all the more, pushing myself hard to deny it and fulfill the responsibilities of healthy me. Well ultimately that made me even sicker. If I had taken myself seriously in the beginning, had more self-respect or self-esteem or something, maybe. If I had already been failed by modern medicine's limited knowledge and knew every ailment did not come with a procedure or pill to cure it, maybe. If I declared myself ill and had taken charge I believe the virus that gave me CFS/ME would not have been given the opportunity to rattle around and engulf my central nervous system, leaving me with permanent nerve damage. But I did not. I pushed myself hard and let it fester. I felt like I was letting everyone down, including me. So I ignored it, while completely succumbing to it, in ridiculous denial. The virus sat blooming in the control center of my body and left its permanent mark. It took me down, a hard crash and burn, after it took everything else away from me. There is nothing I can do about the past, but what do I do now?

I embraced the best of everything to get Fibromyalgia under control. There was no pill, surgery, treatment, protocol, test or hardly a doctor to diagnosis it. I had to go outside the confines of modern medicine to get better. If you go to the grocery store and just buy vegetables or just buy meat or just buy bread & pasta you are going to have a very poor diet and get sick, not getting the variety of ingredients infused into your body that it needs for health. Think of Fibromyalgia like that. It is an under-studied, somewhat new, non-life threatening disease that modern medicine only started paying attention to when Pfizer pushed Lyrica through FDA approval and launched a heavy ad campaign to recoup their cash. Don't get me wrong, the commercials help awareness, and I myself did benefit from Lyrica for a time so it holds its place in the process of my recovery. But there is so much more out there. So much more! I am constantly asked how I got "better" from Fibro. I can't answer that because I didn't get better, I got it managed. It took an exceptional amount of work, perseverance and an unwillingness to accept defeat. I did not know I possessed that much strength, but somehow it was there. When I was stripped bare and at the darkest bottom of my lowest low I realized control in life is but an illusion and the one thing that can never be taken from me is how I react. So here I stand now, waving my arms on the other side of hell and back, beckoning all to join me. Life is precious and short and overwhelmingly worth living. But as long as I am living it will be under my terms, no one or anything else's. This awful, terrible and ultimately freeing experience taught me why the caged bird sings. Because it can.

Thanks for joining,

This blog was originally published on 8/17/10. It reminds me of the long hard road behind me and that I can again conquer the long hard road in front of me.

Thursday, February 2, 2012

What About Me?

I stood in the bathroom today gripping the counter top with white knuckles, fat tears rolling down my cheeks. Those words I just scribbled in pink lipstick stared back at me in the mirror. What about me? I was besides myself with a newly tapped anger. Apparently that blog I wrote the other day about not self-sacrificing anymore due to my guilt about getting sick really stirred some things up. I was finding my power and it was...painful. See all the crap I have swallowed and times I have denied my basic needs for my husband's superficial desires hit the wall last night under the guise of high-speed internet prices. He wants the good stuff, I don't want to pay for it. This is not the first technology vs. humanity argument we have had in our marriage. My husband, well he likes technology. I have found that most men do. I, on the other hand, have very well documented issues I've ranted about in many a blog. So my effort to get back to living by reduce household costs, and get off the proverbial TV nipple satiating us since I got sick, was proving to be quite unpopular. 

But where before I could roll my eyes, put up a mild fuss and go do something else, this time I was fuming in anger. Because this stupid argument represented every time I had not stood up for myself in the past. My oppressive guilt orbited me in a holding pattern of well justified self-sacrifice for years. But not no more! The beast had woken, she had stirred and she had roared. And she was taking no prisoners. So as I embark on a journey of meeting minds with my husband I can say I am grateful. He is ever the willing partner, never shying away from working on the success of our lives. And although not perfect he rises with me willing to conquer another day. However, I will be keeping my lipstick message on the bathroom mirror for a few more days. After all I think we could all stand to be reminded, what about me?

Thanks for joining,