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,

Leah

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.

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,
Leah

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,

Leah

*Medicine Net.com

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,

Leah

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,

Leah

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.

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,

Leah