Thursday, June 28, 2012

Inertia Creeps

It's amazing to feel the changes in my body developing without physically being able to see them. Like someone who knows she is pregnant but she isn't showing yet. There is a massive shift & growth going on yet it remains hidden. Chronic illnesses are much the same-the person can feel a flare coming on where their symptoms magnify. Sometimes the flare comes on gradually in the distance-you can see the storm clouds & hear thunder but it may take hours to actually rain. Sometimes a flare comes on very aggressively & sudden-like an attack that is fast & forceful. I often feel like I am being stalked by this illness-not knowing when or how tough the impact of attack will become. Will it stalk me like a white shark, taking it's time, or launch from the depths with a crippling hit.



Wednesday, June 27, 2012

All work makes Marnie a dead girl

So as this push for us suddenly moving then suddenly moving weeks sooner is happening, my body has given out. We had/have been saving my room for last, & it was a disaster. 5 years to go through of substitute items as my real ones were/are packed in a box, now 3 states away. Cards, little post-it's, the 'get well' to the 'I know you're dying inside' to throw away, dust off if keeping. 5 years of 3 beloved pets, 2 buried now in the ever fleeting back yard & 1 curious but sick wonder bunny & the fur & dust that comes with shedding, cat litter, etc. All of the huge undertaking that I had to give up from my mail art/pen pals days, letters never answered in physical form but in my mind & heart-when it became too much to write back I would mentally plan a reply with the art & handmade paper & envelopes I would send. Clothing that got put in another room, for me to go through soon & keep or give away. 95% will be given away, as they don't fit since this body is no longer mine & has very strict rules on what it can or will wear. Mom & dad's things stored in 'my' closet. After trying to help as much as I could while watching my dad fall, cut his face, sweat, vacuum, & sneeze while mom was having heart attacks downstairs worrying. After sleeping & rolling over in a thousand times in this loosely based sleep, I've woken now to a furious back, mad as I just got spinal shots & have basically cancelled them out. I did so little work but I could feel myself pushing too far as dad's face dripped with sweat & hopes & good intentions. My brother & family here on vacation are coming back tonight & I don't know if I'll be able to make the trip downstairs to see them. This was Chai bunny's reaction yesterday, framed in hiding.


Monday, June 25, 2012

The guilt of being sick

As dad is in my room, vacuuming & preparing for the carpet guys to come measure for carpet to replace what Chai bunny & I ruined, my heart breaks. I feel I shouldn't be allowed even to have pets. We say some people shouldn't have the right to have kids in their care & now I wonder the same about me after Chai bunny passes.

After seeing my brother, his lovely wife, & adorable nephews yesterday, I woke up today so sore my arms feel like they have been run through pasta maker arms that flatten over & over-& I wasn't even able to sit while they ate lunch, pick up my one year nephew & barely could gently hug my older nephew. I realized as we will soon live a few miles away from then they are probably realizing that I will become their burden-one they don't deserve, need, or should have to handle.



Wednesday, June 20, 2012

The rooms

She sits on the cold, uneven, pebbled floor looking up at the curved, winding, beautiful cliched staircase. Not able to get up the stairs she's searched all the bottom floor. Through the long, narrow hallways which seem more like strangely familiar passageways she finds so many doors. Each doorway holds magic. All different colors & tones & decorated in styles all their own. She used to take photographs of doors all around the world, & somewhere lost in an obscure mislabeled box the remaining ones are framed & unloved. Her search for an opening is exhausting, as she has to stop every 3-5 minutes to sit & rest. In the old days those passageways would have been scavenged in minutes-not hours. Each door has a unique doorknob...some ornate, some simple letting the door itself be the star, some a repurposed item like an old chalice. She keeps reaching for a camera that no longer is there, trying now to memorize the details in hopes of dreaming of them later for pain control. Trying so hard to create or grow a photographic memory, her brain gets foggy from the search, the turning of locked handles, & the endless sitting down & standing up. The final passageway brings her back to the side of the staircase, & she realizes there is one final door. She hears something inside, & after turning the handle & being met with continued resistance, she looks through a storybook keyhole. It is the only thing adorning this plain door-so unlike the others, yet the peeping keyhole makes up for the lack of character. She knocks, puts her ear to the surface, & looks through the keyhole. She can't make out much as it is getting darker, but through the room's window there's a bit of light & she sees a cat stretch, yawn, & go back to sleep after a hostile look in her noise filled existence. She gives up, goes back to the stairway landing, collapses gently on the tiny little rocks & wonders what to do next.


Monday, June 18, 2012

Tangled up layers of a person

It is hard to know when I see myself which parts have been there all along, which are just coming out, & which are just the way my persona & body & soul are coping. I wrote this earlier tonight, as the house was getting ready to be shown to sell. Me behind the filth, the perceived anger, the not included in decision making then when I get 'angry' what you see. Me behind the 'how can you live like this?' me behind the purposeful lives of my siblings & their families. Me behind the failure. The pain. The searching. The lost. The forgone conclusion.


Saturday, June 16, 2012

Migraine dazes

I don't have migraine headaches often, but when I do they take me under. After taking Chai bunny to the vet Wednesday, I took a nap & woke up feeling as if my neck was in a vice & there was a softball between my eyes, pulsating & waiting to explode. It is still here but has moved to the right temple. All I can do is try to sit or recline while supporting my neck until this passes. I will fill you in later about Chai bunny's magical adventure ;)



Wednesday, June 13, 2012

Art under a microscope

After taking some pictures that didn't come out as expected, I saw something in them I wanted to explore. After putting them through a litany of treatments, these two showed something about my anxiety I couldn't/can't yet explain.

girl with everything she owns on her back lost on the dark side of the moon.


A bat with a face (look close!) captured in the orbit of a planet. If he escapes he burns up in the surface or flies into space, weightless & lost. Kind of reflects my stress dreams, minus the cool space travel.

Monday, June 11, 2012

Let it out

Today was an incredibly rough. Not just the usual pain & angst, but in trying to get my doctor here to send records to some unknown pain clinic 3 states away & failing, I realized there are a ton of pain doctors/clinics/but some do the meds but not the spinal shots, some do the shots but no get the point. I became incredibly frustrated. I can only see Internet info which is often very one sided. I realize as my friend described it I'm back on that house of cards. Before I even really started building the cards ripped, & my panicked mind along with it. I had to just give in to the panic attack, lay my head down & get in a fetal position modified to my screwed up body, & just let it out. For now.



Sunday, June 10, 2012

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Simply Sunday

As I sit listening to my beloved rain that I love but my evil body hates, I focus on the little good things that have happened in the past few days. Chai bunny remembered how much she loved to get in bed with me for bunny massages, & has been up with me, getting her ears, little face, head & jaw rubbed no less than 15 times at least the past few days. She has a place on her tummy which entails a vet visit tomorrow or Tuesday, but today I'm concentrating on her fuzzy face.

I finished my 4th book this year! It was almost 700 pages & involved me checking it out from our ebook library 4 times, but totally worth it-the first book in the Girl with the Dragon Tattoo series. I just got book 2 from the library. Chai bunny & I shared a strawberry today...her first & she loved it! I got several free ebooks & a few on sale that I can't wait to read-& Amazon held their word-I got my replacement Kindle last week & it is working great! Great tv tonight which is always a good focus off pain point, as well as my books. There are times in my new life when thinking about the good, even if tiny actually does take my focus off pain for a small little while, & that's a massive help.

Saturday, June 9, 2012

Star pills

Recently I started following a 365 photo idea for the day. I get so bored of pics of me, so I decided I could apply some of the ideas to my documenting pics. Today's was a set/4 of a kind. I just so happen to take 4 key pills for pain & muscle relief (along with a denizen of other vitamins, maintenance meds, etc). As I put them out they looked a bit like planets & moons, & I'm obsessed with anything solar related. I did some photo manipulating & dreaming of my pain pills orbiting my brain, trying to figure out what part of me needed them most. Green moon? Off you go to the left's locking up & the TMJ is kicking in. Long oval white? Orbit & dissolve some over the left hip then go directly & release in the left sciatic nerve. Purple moon? Ok, top layer goes to the pinched nerve. 2nd layer? Neck ASAP. 3rd layer right side sciatic nerve, & stay through the 7th layer. Go then & rest on the spinal tap site. White meteor? Go full force & crash directly into the brain's pain center. As usual it is misfiring. If only I had a little space ship & I could go & fight myself inside my own head, & fix me with a light saber.




Thursday, June 7, 2012

Time's humor

I was taking a pic recently & ended up capturing the wrong edge of the intended picture. Doesn't matter what or why, but I found the accident photo compelling. My eye in the pic is looking up, looking to see if I'm holding the cell camera right...which I wasn't, but my eye looks normal. Not so sad. Not filled with tears & dread-I was so focused I was too busy to look like my soul felt. I was playing with my hair. Let me explain-I found a subject a day chart on the net & thought I'd try it-& that day's was descent...however you wanted to cover or interpret it. My hair has changed so much since I got sick & I was thinking about the descent of my hair from well to sick, though my hair itself is really healthy. I don't style it, blow dry it, put any product in it-so it is totally boring & natural. Anyway, thinking about the last time I had it cut professionally-I can't remember.myears. A decade maybe. In a few hours I'll leap out for the first time in years to call a pain clinic. Evidently we are moving this summer, & I need to call them to see if they can take me, what I need to do to start the ball rolling-all the stuff that terrifies the one's who feel a good doctor is far more important than most anything else in life. I'm so scared-what if they aren't accepting new patients, or what if they are not a good fit? I've even had dreams of calling them with disastrous results. For me the unknown used to be so exciting. Move to a new country in 6 weeks without knowing anyone or speaking their language? Can I come now? Start grad school in my 30's with no money? Sign me up! Snorkel the great Barrier Reef even though I'm scared of fish & sharks? I only live once! I was pretty brave. Really fearless. Now making a phone call that signals me leaving my beloved doctors is much scarier than getting on a plane to commit to a country I can't pronounce most of their words. & away I go.


Tuesday, June 5, 2012

Sick opposites attract

So many professional sick people I talk to feel they need to be one thing & yet of course often feel another. We feel strong for just fighting & making it through another day, but so weak for not being able to somehow just smile & overcome. We try to love ourselves but hate our bodies & our diseases/illnesses so much. Many others tell us we seem well & we don't look sick. I love to be happy & laugh, but find myself crying over the laughs & relieving the pain. I want to be positive & be grateful for the good things. I really do, but some nights it is all I can do to get through until morning.


Sunday, June 3, 2012

Leaning into nothing

Sometimes what I think is a solid thing to lean onto-something that will hold me up-I see it's actually dark & missing. I'm leaning onto the abyss.

Earlier tonight mom noticed-again-that as my permanent sitting position is Indian style-it leaves red patches on my legs where my legs are smushed together. It worries her. I get that, yet I cannot sit with my legs extended without sharp pain in my lower back. Anyone with back problems-imagine when it is worse-after standing a long time or after doing certain household chores-imagine that searing pain whenever you stick your legs out. Even a tiny bit-that's what I feel in my back unless I'm sitting on a bed with my legs crossed Indian style. I would love to be able to casually fling down on a couch, my legs propped up in front of me on a table, or curl up in a comfy chair with my legs dangling over the side while reading a book...but I can't. That's one reason doctor visits are awful-sitting in the waiting room physically hurts. It sounds so ridiculous but totally true. It depresses me so much that this fact gets questioned & exists. I feel I'm in such a dark hole & surfacing is so far away.


Roles we play

As human beings, whether we are straight forward or a bit more mysterious & in the shadows, we all play certain roles. Child, sibling, co-worker, friend, ex, virtual connection, parent, aunt, cousin, etc. I play many of these roles, but mine have decreased greatly in past years. I lost being a teacher, co-worker, graduate student, apartment renter, car owner, driver, bar & restaurant patron, shopper, independent person, etc. I gained as well-facebooker, twitter-er, patient, blogger, documentarian, the caregiver's person, bed sitter, disabled person, etc. Often I feel just 2-3 roles. The real me, the brave face hiding me, & the trying so hard but the facade breaks down me. It's a strange world in the brains of the chronically sick.


It's all me but I'm split into 3


Often I just want to hide.


Or keep my sliced life at a distance


I try & disguise the pain behind a mask.


& end up giving bits & pieces of myself to different people, but did they get to see the whole me?

Friday, June 1, 2012

Feeling the shingle's fire

I first got shingles my senior year of high school. It started by my lip underneath onto my chin (following the nerve there) itching like crazy. I thought I had gotten a bug bite but there was no mark. Within a few hours-the next day blisters came up & the race was on. Since then, aged 18 through now, i've had shingles almost always on my face at least 30+ times. I now can feel them coming on, the stress bringing the fiery itching & burning until the blisters appear. I know this bout is brought on by my weakened immune system after spinal tap & spinal shots, & this horrid moving worries. Last night as I felt the shingles silently making their way to the surface, I let the tears come as needed, for holding them in would only further their strength.