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?

Grieving the soon to be lost

Think about someone or something you use & love & depend on. For some a trusted hairdresser. I know people who have had longer relationships with the people who cut their hair than marriages. For some a beloved store-records, organic food, bookstore, etc. Maybe a great boss-a co-worker who goes above & beyond-an assistant. Your favorite waitress or coffee shop server-they give you a little extra topping or French fries. A company you work closely with maybe-you feel your business couldn't last without them. Now imagine losing them. They move, retire, get a new job...for whatever reason they're gone-or you are. For me, preparing to lose my doctors here feels like a death. Yes I know I might get better doctors, help, etc. I don't care. For 5 years my health & life have been in the hands of people who really cared on a deeper level than just a dr. They went the extra mile-trusted my opinions-listened to my ideas & loved that I really knew & listened to my own body & respected that. As I'm to call a pain center in Little Rock & try to see if they will take my bizarre puzzled case on tomorrow, I grieve. I can't imagine starting over. Again. From scratch. The 5 year 5 inch medical file relationship is almost over. It's like saying 'there's other fish in the sea'...yes maybe, but wow, that magically doesn't stop the pain. For me this is like a marriage ending. A part of me dying. Getting back on the dreaded merry-go-round doctor hunt. Is it worth it? Right now, deep in my heart all I feel is a resounding no.

 

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.

 

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.

 

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 2-makeup-#HAWMC/WEGO-quotations

We're given the task to find a positive or negatively feeling quote, & without missing a beat I think of one by the savagely honest Sylvia Plath I read a few weeks ago. 'I am living now in a kind of present hell, and god knows what ceremonies of life or love can patch the havoc wrought.'

As we are moving soon, & I'm leaving my drs who love me & really care about me-all I can do is worry, have panic attacks, & I keep forgetting to breathe. People well meaning keep saying I'll be fine-it will be fun-they'll come see me-which is great, but yet they don't understand the fear of them making plans, calling in sick to work, finding babysitters, etc just to get a call from me saying 'it's one of those really bad days' & canceling their trip. The guilt of always disappointing people-like during this past Thanksgiving dinner having to go upstairs, not being able to say goodbye to my two nephews (1 who I had just met as he was 6 months old) & beloved brother & darling sister-in-law. I know this may be the land of milk & honey-a great doctor looking for a person so puzzling he/she will be thrilled to take on my case. Of course being closer to loved ones will be great. I see all sides-I really do, but right now, this day, this week, as shingles continue to grow larger on my leg, the other leg swells so much all the blood vessels break sideways, & panic attacks are commonplace, the above quote resonates like an old friend's laugh.

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.

 

 

I'm humble enough to ask

I wake up from loosely based sleep, in which stress dreams plague me all night. And all of yesterday afternoon, & the night before. If I was on the battlefield with a sword in my hand, I'm pretty sure I'd lay down my sword & hold my head high. After waking & unable to shake off the impossible dreams, Ryan Adams 'Save Me' is running through my head. I listen to it then find an old friend, Aimee Mann's brilliant 'Save Me', from the stunning film Magnolia.

http://www.youtube.com/watch?v=urMq9XYzqC4&feature=youtube_gdata_player

I know a hero...white knight isn't going to ride in and fix me. The question remains though. I'm at the point I am humble & humiliated to know I can't save myself. Not this weekend, not this too early morning, not this day. The morphine, ice packs, heating pads, & soft Chai bunny ears nudging me for touch are doing nothing to lessen this overwhelming pain, & I'm not above asking for saving.

 

#HAWMC WEGO Health blog month, day 7.

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

Mind on fire

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

The Ring

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.

 

Grieving the small

When people are around that normally aren't, as a sick pro you notice the little things. My sister, husband, 2 teenage nieces, and adorable dog are leaving tomorrow after being here a few days. We've had a great time, & today they shopped, got mani/pedis, etc. Chai bunny got petted a good while by lovely Abby, & loved her...& didn't want me to take her back up. She thumped when I put her back upstairs, as she had traced out to the full attention of someone who is sweet & is able to sit on the floor with her, & not like me-who has to reach down from the bed. Emma got awesome new shoes & Abby the cutest dresses. Cameron & I talked iPad technology, & Sloan & I talked everything. They ate out, took dad to the movies, & did the normal things. I forget how much people really live until they're around. Of course I hold no bad thoughts about any of that, but seeing a dress I might have worn, or a movie I would see on the big screen, etc, a part of me grieves, & parts of me die. That's normal, & if I wasn't that way I'd be lying.

 

 

Constellation me

After luckily winning an iTunes gift card from a contest the makers of the fantastic Star Walk (& Solar Walk & Geo Walk) I was inspired to buy the photo app, Poly, so I could make constellations of me & my life. Here are a few examples...thanks Star Walk!

 

 

 

 

Falling

Fell again today...but at least my brain told my arms to react this time. Been on a heating pad for hours...& family came in tonight to visit for 3 days. I can tell I'm boning to be a fantastic host. Oh sarcasm, we get on so well!

 

Bruises without boundaries

As a girl who has to take loads of medications, vitamins, herbs, etc, I tend to bruise easier than the Georgiaiest peach. After the 2nd big fall a few weeks ago, my dentist has me taking even more generic Advil for inflammation in my gums & right side of my jaw, which is still preventing me from biting down properly. After getting spinal shots on Valentines day, I also got the usual pain shot which helps the hour drive back home less painful. I woke up to find this bruise wrapped from my right hip/bum area all he way around my hip & stomach...roughly the size of my iPad. Lovely, no?

 

 

 

 

Happy spiney valentines!

 This is a couple of days late...but wanted to share my valentines day. The night before my parents surprised me with a little, adorable, perfectly tiny Kindle as a combined early March birthday, Easter, & any other spring holiday you can think of-it's perfect for me, & I took it with me to my neuro appt on V-Day. I absolutely love it, & have already started a ton of new free books. ;)

It even let's me underline & write notes to my heart's content!

 

Czech pub crawl days

 As my parents are getting us somewhat started in the moving process, every single day seems like there are new things of mine in the garage to discuss of 'can we give this away?' or boxes to sort through. Day before last one box held some very dear treasures. It was in a box of what seemed to be my lingerie drawer, & as I don't really have a need for much of that these days it had been in a box in the garage. When asked why two shirts & some others dear things were in said drawer, I smiled & answered that they were so special they deserved to be kept with lovely things. One was a beer shirt from a Czech company I worked for, & the other was my dear friend Henry's birthday pub crawl t-shirt. I cried when I read & saw all the things on it-a Scottish flag drawn by Stevie, Zoe the cat on one sleeve, Rob's 'Marnie is cool' heart drawing, my 'pivo/piva/piv'...the three forms of the p,urals of beer depending on how many you were ordering, with a little beer mug next to it. I miss those days so much, & the friends I still have now, even ten years on. 

 

 

 

Illness with a side of depression

 Sometimes there are no words, too many tears, and so much unwarranted guilt. Only pictures can tell the whole story.