Day 2-Quote-Frida Kahlo

'I am not sick. I am broken. But I am happy to be alive as long as I can paint.' This quote by Frida Kahlo may not seem like the traditional inspirational quote, but for me the raw honesty mixed with hope is the best. When I hear the word sick it conveys the possibility of getting well, which not to be negative, but I see getting well as a 1% chance of happening. I am broken. I do a ton of things daily in the hope of it helping my symptoms or overall health & will continue to do so, but I know deep down that there will be a cure for cancer long before fibromyalgia. I love creating through paints, writing, drawing, etc. With my iPad I've gotten back into painting, & just the freedom of turning a watercolor blob into a flower thrills me. Taking pictures (even the saddest, bleakest ones) of myself living this life is as good as months of therapy. Kahlo's deeply personal paintings of her pain inspire me to no end. I'm so very broken, but having ways to be creative continue to help me cope, & are as close to healing as I'm going to get, & for that I'm profoundly grateful.

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Making the bed

I've been really sick lately. My body seems to have forgotten what proper seasons feel like, & for over a week my sinus/allergies/cold has switched into high gear. Crazy how my body forgets how to fight & adjust to something I lived with over half of my life...after living 5+ years without seasons, my compromised body doesn't know what on earth to do. All I know is that if I don't see real snow after the packing, moving, stress, etc I will flip out. Dad found a bottom/fitted sheet & brought it over. He is really busy today, so I made myself switch around the mattress pad, put on a bottom sheet, & rearrange the batik bedspread so he didn't have to come back over. I have been so happy to just have a bed, tv, fridge, & Chai bunny I've lived without a sheet for a couple of months. Your priorities change when you focus on just getting through each day & night as best you can. Chai bunny loves the new & improved bed, jumping up & thumping so hard she bounced to announce to the bed that she had arrived. Of course my body is cursing me for not waiting for bed-making help, but as the parents are sick with cold front colds too, I just wanted to do something for myself. Mom sent me these roses from one of our many flower bushes last week, & today as they are dying I fell in love with the poppy-like look of the huge middles & had to take a picture. An almost dried Cabbage Rose, watching My Name Is Earl on Netflix, & Chai bunny visits set my mind at ease a bit as I try to breathe deep & fight through one more day. & fresh sheets are just the icing on my happy little cake ;)

 

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Views of my visibly happy afternoon & purple house

After walking through the backyard to my parents/caregivers house to pick up meds & magnets, I walked around the yard looking for our adopted outside discovery, Pepper the turtle. I didn't find him but I did smell the gorgeous flowers left behind from the previous owners. My back was going out quickly, so I dashed (a very slow dash...) home & after resting put up my favorite Wilco poster from my brother with my super heavy magnets on my fridge.

It's right next to the soon to be record player orange corner! Very excited about that. I then put on my ultra expensive lidocaine patches-they take a bit of the edge off of pain, though they are $500 for 60 patches-& I have to get my neuro to sign off on them so insurance will pay. Ugh.

My old dorm room white board is on the fridge, where we keep notes-today was hoping our cat Macy gets better-she has badly damaged kidneys & it looks as if these are her last days, so we are really sad. Next a celebration of invisible illness week, & after last week it finally feels a bit fall-ish in the air. Ahhh yes.

I've been in my little purple house a month or so, & for the first time I lit candles. Mom is always fearful of this as sometimes my meds make me sleepy, but of course I'll be mindful. I haven't really been able to use candles since moving in with them 6+ years ago. Amazing how lighting a candle brings me independence & joy-something most people think nothing of & light candles daily-for me it's a huge deal!

 

The candle in the dark as seen from my bed-on the coffee table. I'm really starting to feel this little house is mine-that it is my safe place where my illnesses are ok-that is my skin is hurting I can be naked & not worry as Chai bunny doesn't mind, & being on the back of a fenced yard my windows are safe & private. Being sick sucks, but making small changes to accommodate mean the world!

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Sleeping lessons

After finally moving into my motorcycle workshop turned my purple apartment, I've been sleeping with less pain. Being back in my orthopedic mattress sleigh bed is a huge part, along with a few adjustments. My house is small, but a separate house & perfect for me. I made my bed a focus as I spend most of my time in it-it kills my back to sit in chairs/sofas/etc, so sitting in bed is my answer. I stacked 4 pillows behind me against the headboard & 2-3 pillows under my knees, creating a recliner type effect. It really seems to alleviate a bit of pain while sleeping.

 

 

Dad & I put together the Tetris like impossible shelf so my records have a great place to live! After we got a toilet & sink put in mom & dad donated 2 large bookshelves to create a privacy barrier around them, & I found my old James Bond poster-& I'm thinking of hanging it up so if anyone ever broke in they'd see a life size picture of a man...the man guarding my home. I can't think of a better bodyguard. ;)

 

Of course the shelves & walls will be filled with all my art, overseas treasures, etc but we are unpacking & setting up 2 households so it will get done in time. We are getting a WiFi extender as I am barely getting a signal out here & am having Internet & Netflix & Facebook withdrawals-so hopefully that will solve that problem. I can't live without my Netflix!

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My amethyst house

As purple is the awareness color for fibromyalgia-& a longtime fav of mine, dad so lovingly painted 2 walls gothic amethyst, a grey-silver light purple & the other two a dark eggplant color called purple blanket. I love the names of paint colors! He had a toilet & sink put in-I'll use their shower in their house for safety, & we angled my bed against the two white shelves we're using (that mom lovingly donated to the cause) as a privacy barrier in the corner by the bathroom. As I spend so much time sitting/reclining in bed, I wanted it a major part of the plan so I can see the tv, face the love seat for company, etc. I had gotten the black wooden sleigh bed back in graduate school-it has 4 spiral silver knobs on each corner that I adore. Mom & dad gave me the gorgeous batik bedspread (that perfectly fits my queen bed) they got in Indonesia. It's perfect! Chai bunny is loving the huge space compared to the only place she has known-the old bedroom. Though the apt is basically an efficiency it is huge to her! It has a garage door that we are covering with my massive vinyl collection on shelves & an old school pull-down school map. I love that I have built-in shelves by the bed for keeping my cords/iPad/kindle, etc right there in reach. This is my 2nd night & I'm just thrilled! Thanks for all of your great wishes! Also a huge thanks to mom & dad, & my brother for finding the guy to put in my bathroom-he chose a great guy.

notice Chai under the table...

my magic bed

media center & my Indonesian triangle shelf

Chai bunny in bed

Watching the last 'Closer' from bed :)

Record players & shelves

 

Headboard details & gorgeous eggplant paint!

 

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Moving to apt!

An hour-ish Chai bunny & I are moving into our apt/house in the backyard of the parents house! We've been dying to get out there but we had to get fixed in the main house first...so pics to come! Here's the paint colors & my one of a kind Indonesian Batik bedspread from our time living over there...& finally I'll be back in my own black sleigh bed after 6 long years. Much to celebrate tonight!

 

Chai bunny adopted my childhood friend Marshmallow from my dear friend Laura!

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Maybe miracle

After possibly the toughest 3 weeks on record, sometimes you catch a break. After realizing I'll be without meds (quite dangerous) for a two week period until seeing my new neurologist, I left a tearful message to my beloved former neuro, begging for help. Normally they can't give you certain medications unless you see them in person, & I knew my body couldn't handle that drive, much less leave Chai bunny. Yesterday the nurse called, & Dr. T agreed to give me a two week courtesy RX-& a family friend will pick it up & mail it to us ASAP. Until it gets here I'll be nervous, but the fact that people are helping restores my faith in mankind. Chai bunny is doing much better-she still has several mammary tumors, but hasn't has anymore blood in her urine, & is eating & drinking normally. We aren't out in the apt yet, but being close to my parents during this time is a great thing. Dad's been painting my apt-gothic amethyst & purple blanket-the first a silvery light purple & the second a deep eggplant purple-I love it! Mom has been finding all my treasures from my former life & some new ones :). Today I'm resting a bit easier.

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Who I was & what I wore

Funny how our wardrobes somewhat dictate or openly invite the world into our personalities-we show them very intimate facts about us simply by what we wear. Who I used to be vs now are as polar as opposites can be. People like me wear elastic waist to avoid buttons. Panties 2-3 sizes to big so as little material as possible touches us-for me my lower spine. Clothing becomes something to tolerate, not express. For a fashion lover like I am it absolutely sucks. I had to go through my wardrobe today to keep, donate, or throw away. Several things had literally worn out-evidently I worked & played really hard ;). Seeing my grad school/Little Rock years gutted me. Amazing how an item of clothing can hold more memories than a camera. Some items I had to keep, way to old & small, but to put in the back of a drawer to pull out when I need to remember. Here is who I used to be, that few of you were able to meet.

 

My absolute ultimate me item. A very thin long sleeved patchwork shirt-ripped, sewn & repaired beyond repair, & scented with Brazil nights on the beach, teaching days at UALR, & my old tangerine perfume. I so gently put one hand & arm through a sleeve, just to feel the old me again.

My orange long patchwork skirt. Usually worn with combat boots, a denim shirt & confidence. So great how a piece of clothing gives you confidence that no self help book ever could. It too was worn all over Little Rock, Brazil, etc. I normally wore it with the next item.

 

The simple denim shirt/jacket combo. The pockets were over the chest, & great to stick money, my ID, phone, & lip balm in...look closely at the bottom right of the pocket & you'll see the cylinder shape of a Burt's Bees lip balm. I wore this as a shirt or jacket at least 3-5 times a week.

 

My wardrobe had loads of shirts & jeans paired with blazers & tennis shoes. The blazer dressed it up for teaching, & the shoes for walking all around that seemingly huge campus. I loved mixing stripes, so I often wore pinstriped blazers with totally random striped tees.

 

My favorite statement...'your future ex-girlfriend'. The dating scene post divorce, being overseas for a decade, etc was a new world. I was shocked people still stood you up, broke up through emails, & other fun dating no-nos. I quickly developed a cynical outlook but deep down was the 12 year old asking 'why didn't he like me?'. This shirt at least made me feel that to those possible idiots I wasn't as sweet as I seemed in that aspect.

I don't know who I am now. My wardrobe reflects so little of my true nature, & that is one of the unspoken losses invisible illness people often face...so the next time you see someone like me, remember them for who they used to be able to show.

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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.

 

 

 

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.

 

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?

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.

 

A day in pics

Sometimes I just don't have much to say-anything of value to offer. One great piece of news: after fighting with/explaining/jumping through the hoops over & over, my student loans & the company that has them after a 3 year battle finally accepted my disability federal judge claim & forgave the debt. I hate not paying back what I owe, but there's no way since I can't work. We're thrilled but I feel guilty at the same time. Today 3 years ago my first house rabbit, Amsterdam, died, & Chai bunny came bounding into my life a few months later. Here she is playing in the spare room...& not chewing the cord. ; )

 

 

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.