This is the state of my Chaosed Mind. The scary, the part that misfires & causes me to seize up & fall, the part that causes me to lose so much strength in my hands (why I have been tested for MS twice in 4 years), the memories, the fears, the stress dreams, the fog, the over active pain center, the hopes, the wants, the needs, the creative, the stings, the grasps, the missed, the smiles, the music, the poetry
Friday, March 30, 2012
Thursday, March 29, 2012
I talked to a dear friend for over an hour tonight. I laughed so much that I cried after the call. Cried as I realized how long it had been-how much we had changed but picked up as hardly any time had gone by-discussed my future. What might be, or could be, or shouldn't be. Laughed at our past memories & stories we had lived & written. Afterwards my mind went wild, & I had to create something to quiet the possibilities in my head.
Wednesday, March 28, 2012
Many of us live with fears. I grew up with fear twisting around my every muscle, thought, & mind as my brother going through cancer treatments, & later dying left me thinking fear was normal. I used to throw up nightly as my fears took over & my stomach felt it had to release this fear. I got better as I got older, but after getting sick, the thought of getting fired (they ended up letting me resign) or losing friends (count is at 3 significant friends) & losing myself in these illnesses caught right back up with me. I have horrific stress dreams, where I'm usually trying to find something that I never can find/finding my pets starving to death/being back at unusually cruel workplaces/& my family abandoning me. I wake up with this on my mind 29 out of 31 days on average a month. My fears now are moving, leaving my doctors, having to tell my doctors, not finding a good replacement (though I promised that there are no takers & we are supposed to move in 3-4 months), etc.
Tuesday, March 27, 2012
I'm home alone for a few days, & after getting a call that left me in tears, I went to get my beloved bunny. I have been staying downstairs as Macy, the parents' cat, gets very upset & cries nonstop when they're gone. So Chai bunny making her excited going downstairs breathing noises was so cute-so nervous as she hasn't been back on my parents bed in forever. She was so shy at first, all huddled into me, cooing & softly making the sweetest, most tender crying-like noises as we cuddled. She got brave of course & hopped around the bed...in my room she's up & down on the bed constantly, but she was in newish territory. I got a few hilarious pics, one which got retweeted as cutest pic of the day on twitter (us watching Alcatraz together) & an under the chin shot where she looks like a shark-dolphin. She cheered me up, & I can't wait to bring her down later today. As anyone with a chronic illness knows, having the all consuming love of a pet is indeed the best medicine.
Monday, March 26, 2012
Feeling so many emotions at once, I can't even express properly, so I'll let the pic speak for itself.
Sunday, March 25, 2012
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.
Saturday, March 24, 2012
Thanks to my kindle & the ability to read again because of ridiculous 'handicaps' I've finished my 2nd book in many years. It was a far cry from my 1st, Agatha Christie, but every bit as wonderful. Being able to get lost in books again has been so fun. People lose & gain all sorts of things with any longterm illness, & among things like living with my parents, not being allowed to drive, not able to cook much, buy my own groceries, get a normal haircut, wear makeup, & a million other things-small & huge-they add up to a level of grief that's humbling & humiliating.
I finished the first book of The Hunger Games & loved it-yes I'm 41 but her struggles to survive resonated with me in a way that's hard to explain. I watch & now read a lot of gritty things, & a lot of that is because I try & take mental lessons on survival from each story. For some it might be depressing-for me it's training. This pic is a photograph put through 2 apps & I call it the Teardrop Nebula. I think Katniss from the Hunger Games would love it & hate it-hating the emotion of tears & being weak, loving the clouds & stars out hunting in District 12.
I'm now reading (& halfway through) The Snowman & a tiny bit through book one of Game of Thrones. One a cracked detective in Norway, & the other a magical mystical world of epic fantasy. They too will be on my survival training guides ;)
Friday, March 23, 2012
I painted a picture recently that turned out horribly. Really just awful...it was a flower, possibly a Poppy that grew outside an apartment I lived in during my time in the Czech Republic. This morning I put the painting through the fantastic Percolator photo app, & it turned out really cool. It so reminded me of a chronic illness-fibromyalgia, interstitial cystitis, rheumatoid arthritis, chronic fatigue syndrome, etc. It is such an ugly disease, but when mixed with a person it looks normal. They don't look sick. Anyone with an illness like this-even emotional illnesses as well know this too well-the 'you don't look sick' thing. Anyway, this painting just brought that disguised normality home today.
Thursday, March 22, 2012
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.
Wednesday, March 21, 2012
As many of my fellow sickities or those who know me know I often talk about the old me & this new me. More precisely, as it's been 5+ years, I think I should call it the now me. Today was a pretty decent day-no horrific stress dreams, pain more bearable for the first time in days, watching Justified & Southland & being amazed by such talent & incredible writing-dad finding my favorite veggie Lean Cuisine tofu strips & veggies in a tomato curry sauce, etc. Still though, I woke with a sense of doom. Seeing pics of friends & family on spring break trips thrilled me but made me long for the days of teaching ESL. One spring break I had 2 out of my 13 adult students in Little Rock who didn't have plans, so I took those 2 guys with me everywhere...out for drinks, the movies, anything-as seeing them so happy for their classmates going off on adventures yet sad to be left behind & alone crushed my heart for them. We had a blast, just doing normal things but getting to know them better-Ronaldo from Brazil, & BK from South Korea. BK opened up so much, & Ronaldo & I loved it as he & I were already good friends but seeing BK coming out of his shell was so liberating.
Today out in the garage, grabbing a club soda (or magic water as I lovingly refer to it) I saw some of my overseas things & student's gifts in a box, & it was the epitome of bittersweet. I don't know if I will ever fit the slices of my lives together well, but at least I can say on most days I try.
Tuesday, March 20, 2012
After getting my beloved little Kindle, I have bought & gotten free a ton of books, as well as checked out ebooks from our library. Knowing how much I want to finish The Hunger Games trilogy, start the Game of Thrones series, several Nordic thrillers, a WWII true account, etc it gives me the silent knowing that staying around will include all of these magical adventures, & help take my focus away from the pain.
Monday, March 19, 2012
Just letting go & painting anything that comes out of my fingers, & using a lot of pointalism, here are some random paintings with the Wasabi Art app.
the Hulk's peace sign
dots take flight
Friday, March 16, 2012
I gasp as I have my mouth covered. Covered from my parents hearing me-as I hold my gasp in the palm of my hands, I suck in for air to be met with salty, wet palmed skin meeting my mouth. Dad has gotten me beer as my spinal shots, morphine lacking relief has failed. A last ditched begged effort for pity & relief. Did they hear me? Did I stifle enough? I try so hard as beer is as expensive as medicine that has yet to find me a hiding place.
He has bought me full-on Budweiser. The Czech original, corrupted by greedy Americans. I listen to William Fitzsimmons, & the loved Julia Stone on his gorgeous album. On my iPad, I can see it as orbiting planets & moons as far from the original album as I am with relief on the app 'planetery'. I watch as my songs orbit moons. Did I ever tell you how I love space? Did I ever tell you the 'Budvar/Busweiser' story? How many key things did I forget to tell you, as I thought we had all the time in the world? Will you hear this song & know why it makes me cry? I hope I did, or that you find it in my SOS emails. You're so smart-& knew me so well...but did I know it all myself at the time? Will you figure it out? As you travel our world, will you figure it out from my missing pieces?
I hope you think of me as I was, as the current has too many tears to stifle. So many tears yet to find.
Thursday, March 15, 2012
After the worst spinal shots for at least a year, Chai bunny didn't get her playtime in the spare room the past day or 2-but she's so perceptive as she senses when I'm really bad, & doesn't stand up & scratch on the door as a signal. Tonight I let her out, slowly followed as she dashed down the hallway, jumping up in a 'Binky' along the way, & by the time I caught up in crashed on a bed she had pulled out the moss from the fake ficus tree. Such a sneaky cutie face. Here is me catching her, & her 'I'm so sweet you can't get upset long' face. Works every single time.
Tuesday, March 13, 2012
My neuro clinic was out of pain shots but full of spinal shots for my sciatic nerve roots. This is the result.
Sunday, March 11, 2012
I'm in a bunch of groups on Flickr, & today I got an email saying I had been banned! I realized that the 'scars & their stories' group banned me (without an explanation but I'm guessing) that they wanted strictly pics of scars, & not bruising from the aftereffects, etc. I understand & am fine with it...but it made me want to photograph a few of my many small & big scars, from the mundane to the unmentionable in terms of the location ;)
This is a large scar (about 6 inches) from my hip being opened up, in the efforts to cut a muscle that was causing such severe sciatic pain. It is the exact scar I'd have if I had a new hip or hip surgery, so if I need one I've got the guidelines. Above my hip & scar are some scars of sort on the wall, old & new, of my past life & current one. I didn't mean for them to get in the pic, but loved that happy accident.
Saturday, March 10, 2012
This pic is of a bruise, underneath my arm & on my breast. Like my soul it's bruised, bloody, scarred, misshapen, old, & not as innocently naive as it once was. But it's real, it's honest. As Louis C.K. says, it's 'chewed up'...which is a good thing. It still has childlike innocence deep down, a realistic hopefulness, & stronger than I give it credit for.
Friday, March 9, 2012
After my 4 filling go around a couple of days ago, my back jaw tooth is starting to lessen pain wise, but the jaw & neck strain of one with TMJ has hit hard tonight. I've been laying on my angry back so I can have my head propped up with that strangely uncalming blue heating pad behind my neck, offcentered to the left with my face trying it's best to keep my unhelpful left jaw somewhere near the heat. The featured pic is reversed, as I have no good light source at present on that side, but hopefully you get the point.
My heart ached as I just finished a funny, grieving, poignant mystery wrapped in an unlikely love story from a British TV series on Netflix. Thinking of moving on-& the evidently us moving to Arkansas hits my heart with a panicked bolt of terror. Yes there are pain clinics...but have doctors moved there since I left who can do the spinal shots? My first Little Rock doctor did shots but at the source of the pain-not the root where the pain originated. Yes, I'm told pain killers like I take here are probably possible, but that alone isn't enough. And probably? Probably? I silently start weeping, quietly as Chai bunny has been so concerned & up on my bed no less than 7 times in the past few days-tears running down my half-hot face as I ponder 'probably'. Sitting in my primary care doctor's office Wednesday, I felt like I was holding out as I could tell she knew I was holding out, as I can't figure out how to say the words 'we are probably moving. In a few months'. Dad made the 6 month blood tests & follow-up as I waited in the car, not being able to stand lying in her office anymore. I asked him why we even made an appointment that we know we probably won't be keeping. It came out harsh when it meant to come out terrorized, but my brain is so lost it doesn't know how to communicate anymore. I just wish I could have a heating pad wrapped inside my head, go into a coma-like state & not come out until there were no more probablys, & only things have been made markedly better with your 3+ medical specialists.
Wednesday, March 7, 2012
As I sit here crying & bitching cos I had 4 really painful fillings yesterday, & have to go to the dr today, I watch this-& see how lucky I am to have medical care. Watch this please-spread the word, pass it on.
Tuesday, March 6, 2012
In trying to get in all things dentist before the bought insurance runs out, I've spent way too much time there lately...at least or my back & flaring fibro's sake. I've been too tired to eat or do much of anything. Have four fillings later today, then my rescheduled primary care doctor tomorrow. All I want to do is curl up again & stay far, far away from any medical establishment.
Sunday, March 4, 2012
Saturday, March 3, 2012
I watched Modern Family a few nights ago-hilarious as always. One of the characters had a leap year birthday, & so in his lifetime he had 9 actual, Feb. 29th birthdays, & this was to be his 10th, although he was turning 40. As it ended up after disaster party plannings & fall throughs of people, places, & things, his partner realized he just wanted to be 10 for that night, not 40. Hilarious, poignant, & so sweet. They rode roller coasters until they got sick & loved every single vomit filled minute of it.
I've never been a big birthday person about myself, & for the first time ever I will admit why. I've been sick all my life. Not like now-professional status, but amateur sick. My brother died of cancer right before his 13th birthday, & a month & a half after my 9th. He was 11 days short of turning 13, & died an agonizing death. Cancer didn't kill him-he drowned from the vomit in his lungs from the cancer 'complications'. Complications my ass. That's how it was phrased but shit, I think a stronger word than complications is deserved.
I always have felt guilty that I lived & he died. Still do, & I doubt that will change. Perfect kid, great at sports, so smart he'd be off in Memphis having surgery or chemo, come back to classes & ace tests over material he knew nothing about. Sweet, loving, loved the kids who no one else liked, treated everyone with love & respect. That kind of kid. I still question God's judgement on taking him but leaving me, a amateur in training sick girl. That's why I've never relished my birthdays. Mom & dad-no one knows this, but as my life is so open now, thought I'd get it out.
Right before I took on my professional status ;)
Friday, March 2, 2012
After yesterday's adventures in dentistry, these pics show better than I can explain how I feel on the outside, inside, my physical self, emotional self, mind, soul, heart, & brain.
Thursday, March 1, 2012
Went to get my teeth cleaned today. Huge phobia of dentists, & hadn't had my teeth cleaned in a long while. Those of you professional spoonie sick people get how seeing 3-5 doctors regularly doesn't leave much time for dentists, & disability doesn't cover dentists. Lovely. Anyway, after getting 2 out of my 4 needed fillings & learning that laughing gas really helps keep my back ok during the process, I agreed to get the cleaning as they promised having laughing gas to get me through it was fine. They were fitting me in, so dad & I waited for about 30 minutes, in chairs that hurt so much, which feels ridiculous saying, much less typing & publishing for the world to see. I kept thinking, 'well, you'll be under the gas soon' to keep me from leaving. So they call me back & we soon hear that oh no! The one room in the joint that doesn't have gas in it is her room. She suggests we just do full mouth X-rays. Against my better judgement I agree. Dad had to run an errand & left. She not only does X-rays but for some unknown reason does every single tiny bit of every tooth with that evil 2-sided hook torture tool, while I'm bleeding everywhere & she is scolding me for not coming in sooner as my insurance, bought from them runs out in a few weeks. She calls dad back & tells him how bad my gums are & that I need serious gum therapy. This is now an hour and a half later. She brings my dentist in as he has to check me before I leave. He comes in & all four of us are in the room, & tears start just pouring down my face...though I'm completely silent. She didn't mean to but blamed the medications, stress, etc for why my gums are so bad. & heredity of course. We finally leave, & I weep openly for about an hour after. I now have a back that is screaming in pain, & it feels like muscles are being fed through a meat grinder while still attached to my bones, ligaments, & spine. Chai bunny got in bed with me & tore apart the goodie bag with the free floss, toothbrush & paste, as if she sensed hat new foreign bag was the source of my crying. So Monday I have part 2 of a promised gas filled cleaning, & Tuesday my 2 other fillings get filled. Then the next week neurologist to give spinal hots to try & undo the damage done today.