Letter to my illness-day 8

 

Dear Fibromyalgia,

I've started to view you as an alien life form who for whatever reason-low immune system shields-availability of bases & posts around my body-unguarded borders...you chose me to invade & live inside. After using me for many, many years, you busted out of me to let yourself finally be identified (like the being in the fantastic film Alien) close to a decade ago. Funny-you had been using me as a vacation home for years, & in those times I would get really sick with random illnesses & symptoms.

Some years you would go skiing in my throat & glands...I would get strep throat yearly during your trips, & when you committed to buying the ski condo & all of your financing came through I became a carrier of strep throat, & you then started really almost annexing my mother. She kept getting strep, taking antibiotics, getting better, then starting all over until her doctor realized a carrier was afoot. He asked her to bring in the entire family to be tested & of course her gut told her it was me. She had been getting postcards from you since I was a few years old. You took a long winter holiday when I got mono, this time touring my entire body, taking time to really see the sights. After that visit I never really was the same. Deep down I feel there is some connection to that illness trip & fibro-after that my body never seemed to recover. After that you came to visit much more frequently, as if you lived part-time on your planet & the rest on me. I never even got a t-shirt! No hostess gift? Really bad manners!

You set up a permanent vacation home in my uterus & started visiting monthly when I was in 6th grade. You had starting getting serious with endometriosis & that little dalliance cost me untold surgeries, insane medication treatments like birth control at age 12 which never helped & only kept me nauseated for months & did the opposite of what it was supposed to. Instead of stopping my periods you & endo revolted & I was having 2-3 periods a month. My doctor was such a prick too-saying 'oh no, you're just spotting'-so I made my poor mom take me back in to make him examine me to which he said 'well, you aren't spotting-this is a very heavy flow' which gave me a bit of temporary delight! He would later go on to gift me with such gems as 'if you have a hysterectomy you will fall in love & no man will ever love or marry you' which is MAYBE why I married someone I shouldn't have & of course ended up divorcing...I think you were up in my brain by that point. Why else would I do such a foolish thing just to get back at said doctor? I found another doctor who indeed did the hysterectomy, only after 3 others refused to do the surgery. They didn't want your theoretical blood on their hands.

After endo split I seemed to be better. Your hiking trips in my vascular brain systems would leave me with migraines, & your float trips in my stomach left my bladder & colon in quite a state-I never did get my security deposits back by the way-but you did seem to retreat a bit. Maybe you got depressed after I seemed to defeat endo. You guys hooked back up for a little while & I had 2-3 more laser surgeries, & endo had been left behind & continued to grow in my sciatic nerve notch, & almost perforated my colon. By that time you had started drilling in my left sciatic region & I spent so much time having my periformis muscle cut & that major surgery, going & fighting with a pain clinic who ultimately (after you evaded them) couldn't figure me out & thought I was just crazy & that it was all in my head (little did they know you actually were!) & various nerve tests, more treatments, etc.

You built a beach house in my bladder when you met interstitial cystitis (IC). Not having insurance then was such a treat! My defense team spent so much money fighting too! Poor team had no clue what they were up against! You & IC still see each other & I think you always will. Kind of one of those see each other every 6 months kind of deal, huh? You finally declared yourself & opened up Area 51 about 8 years ago. I fell & had boxes containing reams of typing paper (100 or more pounds) on top of me, pining me to the floor while in graduate school, & after a local clinic sent me to an ortho, having MRIs, bloodwork, you know he usual suspects he ruled out lupus & found you. You cost me friends, which still stings, lost me jobs, dignity, grace, humanity sometimes. Instead of going out to dinner, the movies, weddings, births, etc I stay in with you & let me just say you are a shitty companion. You've dated depression, anxiety, flirted with MS a lot...you get more action than I ever will! I would ask to live vicariously through you but...gross. You've immigrated to me 100% now. You aren't going anywhere, are you? Do you ever feel guilty? You must really be the scary kind of alien, not the ET variety. If only I could disguise you. Dress you up & hide you among Chai bunny's stuffed friends. I feel like (in the little painting above) after you came out, I just had to surrender my life & old world to you without being able to really fight-I will always continue to fight, but that battle in graduate school, lying on the thin, dirty carpet I lost. I started just weeping, which my old friend interpreted as my frustration with my job & thesis trouble, not knowing I saw the real face of you-in your terrifying strength, & knew I would never be the same. I saw my future in your eyes, & my tears were more for that than pain streaking through my body.

So maybe you could throw me a bone & bring me a GOOD souvenir one day? A snow globe at least? Even a map of your adventures could be used to study, maybe even make breakthroughs. I know we will never, ever get along, but maybe you could think about a ceasefire every once in a while?

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Beautifully Broken

We have loads of flowers in our yard-red, yellow (my late grandmother's favorites), & pink roses, as well as white cabbage roses. Huge bushes of gardenias which smell amazing when the wind blows just the right way, & these purple flowers on an almost tree size bush. Mom discovered that when they wither up they become heavy & break off, & the ground below is littered with the fallen flowers. They are very pretty, but the ones that fall off become a darker shade & are a much more beautiful, very different looking flower. The live ones remind me of the normals-people who don't have the chronic invisible illnesses. They give to the world. They add something. The wind picks them up & their scents fill the air. Many people I've talked to feel guilt over not being members of society who work, do good for their communities & add positive aspects to the world. Every Monday especially I feel such guilt that I'm home in bed when most people are out contributing to society. Having been a teacher I really feel as though I let my former students down. I'm the burdened withered up broken flower who now litters the grass. Though I much prefer the darker, richer shade of purple I've turned into, trying to get through the guilt is so heavy that my petals pull inward inside the center, become very heavy, & prematurely fall to the ground. I know my guilt is unfounded, yet it's still there, on the back burner of my conscience.

The flowers open full-we aren't sure what kind these are.

Dried up fallen ones that mom brought over last night.

The gorgeous colors of the dying, withered blooms.

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Invisible Illness Week starts tomorrow!

Invisible illness week starts tomorrow (Monday, September 10, 2012) & so I will be blogging for that cause in a few hours! Join me!

 

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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 jaw...it'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.

 

 

 

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.

 

TMI Tuesdays-WEGO Health-behind the curtain

Many of you know the basics of fibromyalgia. The pain, merry-go-round doctors, trial & error medications, etc. all of that is a huge part, but even for all my openness & knowledge is power, there are a few things that only my parents know. There are things so humbling & humiliating that I keep most of them to myself. One of those things is the lack of personal hygiene. Often times taking a shower, even with the little plastic stool I use as a safety precaution & the fact that I can't stand for more than about 3 minutes at a time-even sitting down showering is exhausting. Many days can & do go by when I can't shower or bathe, & it's a crushing weight to one's self-esteem. To not be able to jump in the shower is a luxury I used to take granted-or a soothing bath. Things like this that go unsaid make me want to curl up & hide.

 

Housebound holidays

So often being a sick housebound person feels really tough when everyone is at the beach, at a cookout, or at a holiday party. Granted the holiday is about the men & women who serve with honor & bravery to keep us safe-& yet we all take advantage of the awesome sales & South Park marathons. Obviously we can balance both-but being stuck at home feels like any other day. I decided to treat myself a bit, & got 7 Nordic crime ebooks discounted hugely today. I let myself relax more & enjoy marathons, & try not to feel guilty that I'm not able to work or do the things most normal people do. I also really let the thought sink in that I could be a sick person stuck in another country where I have no rights-access to medical care or help. The thought of living my life without the huge advantages I have could be a much worse life.

 

Feel good Friday-retraining the cogs

I've talked often about this upcoming move. Every fiber of my being says disaster yet I have no choice. Losing my doctors at this critical juncture is too much for me to stand. Yesterday, as my parents were packing, they found & brought down a gorgeous batik bedspread from our time in Indonesia. As the house they bought has a small workshop in the backyard-that will become my home. There's no bathroom or closets, but I've been trying to refocus on the fun I can have semi-on my own again. As I was offered that bedspread, I realized it's not necessarily what I would chose but rather after a few hours of it spread out on the bed in front of me, it started choosing me. Showing me a glimmer of hope of a few things. Nothing will be fixed physically, I am not to be a miracle healed, but I can spread out all my boxed up vinyl records, & life, & at least listen to my records at full blast as the pain washes over me.

 

Yawwwwn

Ever since the spinal tap I've been exhausted. Way, way, way more than the normal me exhausted. I got shots in my pinched nerve & sciatic nerve Monday. I've been sleeping at least 19 hours a day since. Amazing how your body reacts to various things & I guess how my body is trying to protect me from myself. I slept all night on & off the recommended heating pad (usually it's ice down my pants but dr. T said heat this time around) & didn't take my last pain dose as I fell asleep. Waking up moments ago, all my mistakes arrive knocking at my door. Pill? Taken. Sat up & hunched over & stretching? Doing. Cold club soda out of the 2 liter? Gurgling & making that fun bubbly sound. Chai bunny is at my feet happily munching on a treat & very happy I'm awake. I sat up in bed gingerly yesterday & ended up indeed protecting the new shot sites yet forgot & twisted or wratched the spinal tap site. My face & lips are swollen from meds & the steroids in the shots, & my hair looks like really bad uncute bed hair. When I feel guilty that I can't work, help people, you know, be a productive human being, I try to remember days like this.

 

Living underwater

The medications I take make my legs feel like jelly. The sense of impending doom makes me feel like I'm submerged under water, but yet I can't drown. There's no assuring oxygen deprived thoughts of 'it will all be over soon' yet the panic & fear grow stronger. That has been me, since the day I found out we were leaving, & now, the day I tell my beloved doctor, the panic rises into my throat. I can't breathe or think but no hand reaches into the water to pull me up.

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

Superpower day-day 3 makeup

If I had a superpower right now it would definitely be the power to shield myself from things I don't need to hear or feel, like guilt for something I didn't cause-the kind of guilt that comes when you are dependent on caregivers & people for everything. They never mean to make me feel guilty but of course I do. Today dad went to pick up two medications-insurance never pays for one but they always pay or it anyway. I get downstairs tonight. I usually come down every night & sit on my parents bed & watch tv. When I first got here 5+ years ago I would watch tv with them, but my body's bizarre reaction to chairs & sofas got too uncomfortable, so they watch in the den while I'm in their room. It's my only real socializing of the day. I get my food, as well as Chai bunny's & then go back up a few hours later. Anyway, dad mentioned that they only had one prescription. Turns out the pharmacy just accidentally overlooked it, as most people can't pay for drugs not covered, if they have insurance at all. I called & talked to the pharmacy & as soon as I said my name the girl said 'oh yes, we missed putting that through'. I feel guilty he wasted a trip. I feel guilty on a summer weekend in a tourist town with bumper to tourist bumper traffic dad has to go back tomorrow. I feel guilty about the hundreds of medications I'm on, that I'm on anything at all. Being able to block out guilt for all of my sick friends would be my superpower.

 

 

Day 23 Sleeping Beauty? #HAWMC WEGO

It's funny. When I think about the story of sleeping beauty, I dig it-yes, it would mean missing out on life & all, but in a way I'm already doing that. I often say to my parents that I wish I could be put in a medically induced coma when going through a really rough pain patch. Many fairytales were written as dark, macabre stories that got Disneyfied, but if you look deeper you can see the similarities. The Princess & the pea? Never could get comfortable in her bed. Sound familiar? Lately everything I read, watch, or see makes me think of chronic illness & survival. No, I don't think I'll be fighting off zombies anytime soon but I am fighting, right?

 

 

Day 16 writing style #HAWMC #WEGO

For me, something, a picture or event just goes from brain to blogsy. I'll be watching a movie & have to stop & write my blog...example: after 'fight' tonight with family about moving

Today I realized that from now until we move there will never be a day when I'm not asked to go through boxes, asked about items-should I, can I, may I keep things? Things I love. Things that bring back memories. Happy memories, sad memories, bittersweet memories. Each item has a story, & each story carries grief, laughter, love, & letting go. Mom & dad see my reaction to this as anger-when it's the opposite. Each item I see Zoe, from the first day I got her until the day the vet put her to sleep. I see my overseas life-when I did something that mattered. I helped people...there was a need for me in this world, & there really isn't that need now. I see old friends-some I hold so close to my heart even though I've lost them in one way or another. I see Kris-my late brother. I see my old future potential. I see my test results that admitted me into graduate school. I see gifts from my university students. As much as I hate to say it pain overwhelms any feeling of joy at looking at these precious items. Mom & dad think my resistance to change boils down to drs & morphine, when it's grief over losing professionals who see me as a person who is legitimately hurting & in pain. Mom feels she is the whipping post, dad feels like the joy he used to feel can never be found again, & I feel like an anchor weighing them down from sailing into their sunset years together.

 

 

'my dream day' WEGO #HAWMC day 14

Wow. Easy but really hard. I was so lucky & worked so hard tutoring in my off hours to work, live, & travel all over the world. I love having these memories, but I assure you sometimes they are more painful now that I'm alone & housebound. I am making my day re-visiting 3 amazing places, with J, my closest friend.

First we wake up in the coolest B&B in Tirendentes, Brazil-a tiny mountain mining town. We spent 2-3 days there about 8 years ago, & it is easily one of my alltime favorite places on earth. We will walk around, & I will be able to walk more than 3 minutes-I'll be able to keep up with him, & we will see parts of the town we missed before. Here is a link to a pic that looks identical to one of mine, somewhere in boxes in the garage.

http://www.flickr.com/photos/ricardobevilaqua/2271628610/in/photostream/

We will then magic carpet over to the Great Ocean Road in Australia, & visit the glow worm forest where you feel as if you are floating with the stars around you.

 

Then, around midnight we will jump over a few hours north of Brisbane, Australia, & go to the Mon Repos sea turtle sanctuary, where mother turtles come & lay their eggs, & then other clutches of nests erupt-the baby turtles tunneling up through the sand, down the beach, & out to sea. I got to see both one might under a full moon, & it honestly changed my life. Here's an amazing video I found...

http://vimeo.com/14136833

 

This morning...#HAWMC WEGO day 12

Today we are to start with the given sentence & just free write. 'This morning I looked in the mirror' & immediately looked away. It's funny. I've been documenting my illnesses for almost 5 years now, & most of the pics are self portraits. I don't mind looking at them...even though they are me they aren't. They're the subject of documenting fibromyalgia & how it looks, acts, is. Taking pics & opening myself up to something so vulnerable is a project-a coping mechanism, just like blogging & a pic a day is-it might seem vain but it's a far cry from that. I used to photograph my overseas living, travels, & when I became housebound I had to turn the camera on myself to face what I was becoming. It was a way to learn to live with this new, foreign me in a distant way. Taking it as a project kept it from becoming too personal at first. I was looking at a disease. I hate seeing myself. I hate looking into a mirror. There are days I purposely don't look in a mirror for days, yet I see myself in photo manipulating pics daily. I'm sure it will continue to stay that way, though I know it's not totally healthy. Just trying to make it minute to hour to day to week to month is hard enough.

 

 

Snowed Fibro White & the 7 Phased Dwarves

The ever present Sleepy

 

The fear

 

The Lost

The Numbed

 

The Angry

 

The Pained

The Confused

 

The Depressed

Submerged

For a chronically sick person, we all know that whether it's physical or emotional, etc there is the overall picture. Pretty parts, confusing parts, abstract bits, things you somewhat understand & some that are baffling, but if you look at the close up, there is so much submerged below the surface. Much darker, supportive, hidden parts. My hidden things are so humiliating. So embarrassing. They make me feel like I'm 7 yet 87 at the same time, yet I'm no Benjamin Button. As open as I am there are a few things I keep deep, deep down for fear of the reveal of some things that happen often & feel so crushing.

 

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

Moon comes down to visit

As my worried mind won't calm, all I can do is paint & imagine that I can sit, outside, with a soft wind & cool temps holding my fears as the moon comes down, bringing the stars to brighten my darkened head.