Day 30-Word Cloud-#HAWMC/WEGO health

As I work pretty much only on an iPad as I can manage to carry it & not a laptop these days, the wordle.net wouldn't work, but they suggested a great app where you can only use 10 words BUT you can use your own photo as the backdrop! Perfect for me as my blog focus is documenting me & these illnesses. This pic was taken about a year ago, & I took a purple (fibromyalgia's awareness color) ribbon & wrapped it around my mouth, as I had found out news that would deeply impact my life & had no say in the decision. I used it with the words shown to make my own sort of word cloud! (the app is wordfoto)

 

 

Day 29-6 sentence story-#HAWMC/WEGO

I came downstairs yesterday & took my usual place on the bed. I have my necessary pillows in front & behind me, to cradle the body that I've become. I look to my right & see all of the bedroom has been packed into boxes. Pictures, books, mementos, all scattered yet tightly packed into various boxes from other various moves. There is a blank space in the shelves left for a box. I lay down in front of the space, & took pictures of this body packed up though unready to move.

 

Day 28-the 1st time I...#HAWMC/WEGO

The first time I took a picture & realized it could be my very own form of art was when I first started living overseas. I would spot things that weren't necessarily the focus most people would take, but what little details I noticed & loved. It was how I liked to travel-off the beaten track & off getting lost & finding wonderland. I remember being on a trip on the island of Bali, Indonesia, & we went to some places most tourists don't go. We stopped to watch women threshing wheat, & I took pics of them, but also I got down into the wheat field & took pics from the perspective of the stalks. Those pics are in boxes now, waiting until we move & I can finally display them as I used to in my own place. I had been missing art. I had broken almost every bone in my right arm, & it had really messed up my ability to draw, paint, etc. When I saw that I could make art by the angles I chose through my lens, I found my art outlet again. It was just thrilling. I to better & fell more in love with discovering things I otherwise would miss. After becoming housebound once again I felt lost & without an outlet until I turned the camera on me. I love photography. For me it is the outlet I needed at a time I felt so lost & frustrated without an outlet of creativity. The pic below is from last Christmas. We were RA my neurologist office, & I had just gotten spinal shots. While waiting for dad to bring the car around, I scrunched over on a small ottoman type thing beside the tree & saw a gorgeous gold ornament that had fallen off in the back, but from my scrunched view it was reflecting the lights from above, & I instantly grabbed my camera & shot a few pics until dad pulled up. It's my favorite Christmas picture, as I would have never noticed it if I hadn't been doubled over in pain. That's the day I thought up my tagline, 'pain worth a pic'.

 

Day 26-5 things-#HAWMC/WEGO health

Day 27

 

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going

 

Difficult parts:

1-humility that comes with things like personal hygiene taking a backseat at times

2-pain that nothing can quiet

3-feeling invisible

4-guilt that I've ruined my parents lives & plans

5-not seeing a future I can handle or a future I might could have had if I hadn't gotten sick

 

Small victories:

1-getting my pics & story published in a magazine

2-feedback from people who identify with me-or one friend who said she wanted to be a good friend to her newly diagnosed friend & reads my blog for advice

3-the sense that I'm fighting with every pic, blog entry, etc.

4-seeing who my real friends are...strangers, old friends reconnecting, etc

5-taking my loss of photography that I loved overseas & repackaging my subject as I turned the camera into myself, soul, & opened up the raw nature of my life. I found immense freedom in that!

 

 

Day 26-tag line-Pain worth a pic-#HAWMC/WEGO

Today we are to come up with a tag line for our illness or blog or just overall focus. After living & working & traveling all over the world taking pictures, I missed the creative outlet so much. After a year of being housebound, I turned the camera inward. If this illness could destroy me but it not show itself outwardly, I decided to give it a face. My Flickr accounts turned to a pic a day blog, & it's grown from there. I had said once or twice that phrase...pain worth a pic, & I feel it really sums up the education & knowledge that drives me to keep doing this blog. These two pics show how I was feeling today. Hopeless, guilty, sad, scared, angry, & wanting to at once disappear yet to face this illness as well.

 

 

Day 25-memory from another view-#HAWMC/WEGO health

The girl sits on the bed-naked-as any clothing that touches her skin feels like an attack of needles. She has an ice pack propped up on a pillow placed carefully so it covers two inflamed areas on her lower back of the spinal shots from earlier that day. Her left sciatic nerve starting in her back & radiating down the back of her leg & the top & bottom of her foot feels as though an electric prod combined with a vice is irritating the nerve constantly. It never lets up. Her left hip is so tender to the touch she hasn't slept on it-hasn't even leaned over on it-for the past 7 years. She tries to watch tv to take her focus off of the pain yet can't focus. She switches to Netflix on her iPad, trying in vain to find anything that can help focus her damaged brain's pain center elsewhere. After starting & stopping at least 3 different movies she finally settles on one. Tears start falling onto the screen. Beside her the bed softly indents as her house rabbit, Chai, as carefully as she can jumps up on the bed. Chai starts licking the sheets which in bunny means 'deep affection'. She puts her front paws up on the girl's left shoulder & touches noses with her. She barely licks her arm, but as it feels like acid she stops & hops around in front & licks the bedspread, pillows, & any clothing on the bed. As she examines the girl one last time she gives final licks & slowly jumps off the bed, flops down next to one of her stuffed rabbit friends as the girl smiles.

 

Day 24- Mascot a go-go #HAWMC-WEGO

Our topic for today is to have a mascot for our illnesses or health focus. I'm choosing my own name...the reverted butterfly. Within a year or so into my becoming housebound & getting involved online, I discovered that many of the groups out there have butterflies as their logos or animal so to speak. I liked the thought, but as I had spent the last decade of my life living & teaching overseas, I felt the opposite. I was lucky enough to have lived in Indonesia, the Czech Republic, & had traveled in Australia, Asia, Brazil, etc. I felt like I had reverted back to the cocoon stage but was fully grown, so when I started my picture a day blog, I chose to refer to myself as a reverted butterfly. The important part I felt was to be honest-to paint a true picture, but also to be positive. I am trying to fight my way out of this new cocoon. Even if I never fully get out I'll never stop fighting, & to me that is my main message. I painted a picture of a purple butterfly, as fibro's color is purple, fighting to escape the cocoon stuck on a tree branch. You can see I have windows into my world from the cocoon, & damaged wings are sticking out, trying to stay a part of the world from this strange new wrapping of life.

 

 

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 22 things we forget #HAWMC/WEGO

There is a popular site where people post pics of notes & post it's with a message left in various places. Some funny, sweet, touching, etc. We are to do so & if we can't post it, pretend. Where would you leave it? What will it say? I couldn't decide, so I'm doing 2.

When I was 14, I was having horrible cramps & I would miss days of school & work monthly. My first gynecologist told me 'when you see blood, you see pain'. He quickly became my ex-doctor. Fast-forward 4 years & after having every surgery & procedure (including self injections into my stomach for 6 months) I had a complete hysterectomy. In passing as he was the local dr in our small town he said before I had the surgery (though e wasn't my dr) that 'you will fall in love this first semester of college & no man will marry you because you can't have kids). I was strong enough to know to listen to my body. I had severe endometriosis & I knew something wasn't right. My post it would say 'always trust what your body is telling you' & leave it in as many waiting rooms, hospitals, nurses stations, etc as I could.

 

My second post it would simply be 'Savor it all'. Savor that movie-that meal out with friends. That first date, kiss. Savor that trip to Target. Really enjoy sitting in that coffee shop. Savor the powerful fun in driving your car. Today, national record store day, I really missed not getting to go & flip through cd & record bins & finding that hidden gem, or new import vinyl, or an oldie you've always meant to pick up. Some days being really & truly housebound for all intense purposes hits home. For some reason, that was today. I would leave that note in mundane places where people take living for granted. At the cashier line, or a table at a local dive bar. In a bus seat or a cab. On the dashboards of cars or on people's front doors. Here is me, trying to savor listening to some records, & holding a lost dried petal from a photo shoot I had earlier in the week before the flowers get tossed & we move.

 

 

 

Day 21-madlibs #HAWMC WEGO

Right, after being so sick with 'fibro-flu', in which it feels like you have the flu...everything hurts, even your hair, skin, etc & at times have fever. I almost always post blogs daily, but the past 2 days I've been so sick not shaking was a monumental task. I'll make up the days missed in this month's challenge, but for today I started back on their schedule. It's a take on madlibs, where you fill in parts of speech & they generate a poem (mixed with EE Cummings!). At first I thought why the hell...this makes no sense-then, considering my lack of brain function it almost totally makes sense. Here it is, plus a pic of me under some dead dried roses. Enjoy! ;) ??!

Awful Rabbit's Awful Rabbit




Wildly i have never Sing, Stupidly beyond

any Sloth, your Snowflake have their Chronic:

in your most Superb Noodles are things which Hug me,

or which i cannot Hate because they are too Unemotionally




your Fantadtic look Greatly will unTalk me

though i have Slap myself as Picture,

you Clap always Film by Film myself as Brush Signal

(Skiping Sadly, Badly) her Hilarious Paste




or if your Cage be to Throw me, i and

my Bed will Write very Madly, Slowly,

as when the Phone of this Sloth Use

the Ipad Ugly everywhere Jumping;




nothing which we are to Hang in this Cd Type

the Typewriter of your Great Tv: whose Pretzel

Play me with the Word of its Sentence,

Hoping Igloo and Mitten with each Frolicking




(i do not Quit what it is about you that Kiss

and Pet; only something in me Love

the Boot of your Snowflake is Zen than all Brush)

Ladybug, not even the Clover, has such Beautiful Tofu




- Marnie & e.e. cummings

Copy html code to post poem to your blog:










 

Fish under roses

Day 18 WE ARE DIREWOLVES...#HAWMC WEGO

Our starting point for today is to open a book (or in my case-my kindle, though I did open the book I was reading & turn the pages) & the first sentence you see to use that & free write for 15-20 minutes. My book is the first Game of Thrones books...full of epic battles, love, loss, dragons, knights, power, the throne, kingdoms, flaws, strengths, strong women, smart men, etc. All the things you could possibly want from that genre, with a bit more. Oh, & direwolves, violence, & wildlings. ;)

'She's not a dog, she's a direwolf.' I immediately go to the 'but you don't look (or sound as I was told recently) sick' phrase all of us invisible illness people have heard at some point. We may look like a normal wolf, but we aren't...we are direwolves. We are different. Stronger. Smarter. More intuitive. I've met so many of us who seem to have or have gained these qualities from having these illnesses. We may look like a wolf, but inside, we are special. We are stronger. We are direwolves. There are many minuses in being 'special'. I don't have to waste your time in listing all of them. I've learned though that we are so much stronger, tougher, wiser, & braver in being abnormal. We have the fire inside of us. We have the strength to be vulnerable. We are on the battlefield daily, & we have many, many scars to prove it. As one of my twitter friends says, we are chronically awesome.

Pic titled The fire inside

Day 17- pent-up feelings will explode in 3-2-1 #HAWMC

One of the biggest mistakes that I learned the hard way was mentally (& emotionally) secluding myself the 1st year I became housebound. I had to move in with my parents in my mid-30s. They became my caregivers by default, & as I write this I've just woken up with a massive panic attack...which is a perfect example of why sharing helps. My parents couldn't understand all the feelings I was having. Grief, loss, humility, independence, etc were just a few. They took the look on my face as anger & I would be shocked when they would frequently ask 'why are you so mad?' when I was in fact, at that moment, very depressed-not at all angry. My face came across one way & without my knowing gave away the wrong emotion. I didn't talk to anyone-didn't reach out through technology like I do now. Fights would start & misunderstandings took over. I would implode yet the bottle seemed to break outwards.

I joined Flickr & finally started documenting me-my fight with fibromyalgia & what physical & emotional tools it was taking. It became my saving grace...to open myself up to the rawest degrees. I started joining groups through various social media & found a voice, & last year really started blogging daily. It has made a huge difference in simply getting feelings out & rarely having to say a word-my face did the talking yet this time people saw what I was really feeling. The picture below is photo manipulated to show how my outsides don't match the invisible pain inside.

 

 

Day 16 #HAWMC WEGO pinterest board

I had created a health board a few weeks ago, & though I still don't totally cruise through Pinterest with ease, I try & navigate as best I can. Today we were to post 3 things...my first was a painting of what I think my misfiring pain synapses look like.

 

The second is my little nurse bunny, Chai ;)

 

& third-a painting of my eye in the dark-feeling lost & not knowing how to move

 

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

 

Day 13 (ahhh Friday!) 10 things I can't live without WEGO #HAWMC

Ok, other than my parents who took me in after I got disabled & housebound, etc, here are some things that keep me GOING. Whether it is acts or material things, here is a how to ten for me...

1. My house rabbit, Chai. She is my little nurse. Jumps on my bed to check on me, jumps up & frolics often, & fills me with joy when I have none.

 

2. My iPod. When waiting at various doctor waiting rooms, blocking out everything & letting dad be my ears is crucial. Sitting in uncomfortable chairs & smelling the various scents of people & their vices-smoke, too much perfume...my brain's pain center goes into overdrive. Closing my eyes & turning up my music with my body folded into myself gets me through.

 

3. My iPad (no, I'm not an Apple spokesperson!) keeps me connected to the outside world. My Flickr pic project, blogging, Facebook, twitter, not to mention losing myself & trying to focus on games, Netflix, entertainment, etc. I count my blessed stars daily for this magic machine that isn't too heavy for my weak body to carry!

 

4. My cheap not smart cell phone camera. To not document this illness would mean the end of me.

 

5. My new baby Kindle. After not being able to hold books open & read, ebooks got me back to reading. I used to read 3-6 books a week, then one for 5 years. Since getting my kindle in mid-February I've read 3 books already!

6. Art. I do all of it through painting apps on my iPad as I can't stand the paint fumes or hold brushes, etc, I can paint again with oils, watercolors, etc. :)

 

7. As a vegetarian, I eat Amy's organic veggie/vegan meals once a day. Also Lean Cuisine veggie meals, & the veggie Kashi meals. They save me-I microwave them & as I can't stand for more than 3-5 mins I can sit & wait. I so miss cooking properly, but I count my blessings that these products are available. (no pic but Chai bunny's a veggie eater too!)

 

8. Little surprises...at times like this one, when looking down, crying, the blown glass light fixture reflected in my iPod at my neuro office, are always a little extra I live for...

 

9. Pills, from pain meds to magnesium to ice packs & heating pads. A necessary evil.

10. My doctors. They understand me-they know me-they honestly care. I don't know what I will do without them when we move. How will I ever find them again? My sadness at the thought.

 

 

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.

 

 

Modern Leper-Day 11-Theme Song (WEGO #HAWMC)

Today I'm to imagine if my blog had a theme song...words, music style, etc. After the day I have had I can barely sit up, much less write a song, but I have a song so near & dear to me that anything less wouldn't be fair. I had gotten a free sampler & at one of my many neuro apps, like 3 years ago, in the waiting room came across this song. It stunned me? It had lyrics like 'I am I'll, but I'm not dead, although I don't know which of those I'd prefer'. It was raw. Honest. Yet set to the happiest Scottish barn dance tune (not that I've been, but you get me) & had awesome cuss words that emphasized my wanting to fight in an honest manner, & I don't know of many in this illness(es) who haven't used bad language-it's a savage disease. I don't give it the upper road courtesies of not sinking to it's scheming manner.

Today I had my left sciatic nerve shot full. Was told I needed a spinal tap next month, May 6th, to again rule out MS. Didn't get a pain shot but instead out of the blue got pulled into a physical therapy meeting. Those two women knew more about fibro than most doctors. They had to push in on a spot as we talked about the possible lymphedema in my leg, & it felt like they had electrified my sciatic nerve with a taser. They feel my sciatic nerve is so bad it could be breaking blood vessels sideways from swelling hip to ankle & not necessarily lymphedema. They helped but holy shit, where she pushed in on my hip feels like I got hit with a sledgehammer. I was numb yet hurting so badly, & on the way home, once again, without discussing it with me I questioned dad on something & he had to admit that they found a house a few weeks ago, put an offer, got it, & close on it just days after my spinal tap. When asked about doctors? 'none yet that can help with the pain medication treatment plan, but 4 possibles to watch your spinal implant' if I get it. Wait, so he thinks fibro is boiled down to just my back? Are you freaking kidding me? And they promised we would not move until a doctor could care for me like my 3 doctors here do. Guess that's out. I turned on the latest Ryan Adams cd, stared out the window, & haven't seen them since.

 

The Modern Leper, by Frightened Rabbit

A cripple walks amongst you
All you tired human beings
He's got all the things a cripple has
Not working arms and legs
And vital parts fall from his system
And dissolve in Scottish rain
Vitally he doesn't miss them
He's too fucked up to care
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
On his last leg
Well, I crippled your heart a hundred times
And still can't work out why
You see, I've got this disease I can't shake
And I'm just rattling through life
Well, this is how we do things now
Yeah, this is how the modern stay scared
So I cut out all the good stuff
Yeah, I cut off my foot to spite my leg
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
Well, I am ill
But I'm not dead
And I don't know which of those I prefer
Because that limb which I have lost
Well, it was the only thing holding me up
Holding me up
Well, I'm lying on the ground now
Walking through the only door
Well, I have lost my eyesight
Like I said I would
But I still know
And that is you in front of me
And you are back for even more of exactly the same
Well, are you a masochist to love a modern leper
On his last leg
And you are not ill
And I'm not dead
Doesn't that make us the perfect pair?
Just you and me
We'll start again
And you can tell me all about what you did today
What you did today

Keep calm...WEGO/HAKMC Day 9

For day 9's task, we were to create through the keep calm & carry on maker online, but to use our message, illnesses, etc to personalize. As the lymphedema (severe swelling in one leg) is getting much worse, it is very hard to just walk. A few hours ago the parents called me down to the garage to go through a few boxes. I was hurt & surprised as they knew how going up & down the stairs is a ton more difficult with the left leg elephant limb...it was tough. To see an ex-boyfriend's postcard, bits & pieces from my teaching, overseas souvenirs, marriage things, you get the drift.

Of course I made piles of to save/donate/throw out, & feeling like an emotional rake was gouging through me I took a few pieces (that I'll through away) but not before I, as always, document some of the things, & explain their relevance. In keeping with my quest to document by photography this savage disease, I made this 'keep calm' alteration.

 

Day 8-WEGO Health...best conversation I had this week

As I spent the past 2-3 days in excruciating pain & or dead asleep from meds, I'm late posting this. Honestly? I had no conversations this week. I live with my parents as my caretakers, & of course we talk, but I seem to be up with #painsomnia & asleep when they are up, & they are great & loving, but I had no conversations at all this week, & yes, it's sad, pitiful, & I hate writing this as I don't want to be 'oh poor me'. I talk to myself ALL the time, to my dear house rabbit who lives in my room, & tweets & Facebook posts. Believe me when I say I'm not copping out & doing the work. When you realize because you are too sick to even make it downstairs, it's very humbling to admit the last real conversation you had was one last month-& it was one of about 15 in the past 5 years. I think people who aren't chronically sick don't really think about how a conversation, even with someone you don't know in the store checkout line, are vital to the common mental human touch we all need.

 

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.

#HAWMC WEGO Day 6-Health Haiku plus (Tanka)

I just saw the April WEGO health writing about health all month in April, & as I'm a few days late the 5 days I have missed I'll do in May. Today's focus was a haiku, the traditional 5 syllable 7 syllable 5 syllable Japanese poems, or doing a Tanku, adding two extra lines with 7 syllables each.

 

Yesterday mom & I had back to back ENT dr appointments, as we both have terrible chronic coughs, etc. Mine is caused by allergies-when I moved down here 5+ years ago I developed horrible allergies & this deep, chronic cough. I even put Alabama on the new patient sheet under 'allergies'. I don't think the dr found it funny...but when I lived overseas, mainly the Czech Republic, I had runny nose & colds but little to no sinus or allergies. It was just fantastic-to carry pocket packs of tissues for the cold weather only!

 

The two hour round trip took a toll on me & today I'm fevered, sore, & feel like I was dragged behind the car & not just in it. Riding in cars makes my bones feel like they are breaking, but I do try & bear in mind that every little discovery is yet another piece in this disaster of a puzzle that completes me. Here is my very first haiku, or tanka, along with a pic that goes with my day.

 

 

The pokes the prods hurt

 

A necessary evil

 

Leave me aching so

 

Extra doctors add knowledge

 

To my jigsawed puzzled life

 

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.

 

 

Prettying up the mundane

Lately a few things have happened-been said-etc in which the subject was played up or down to disguise the honest truth. Not lies, just made-up or tweaked in order to appear a bit better. If you strip down me to my absolute basics, am I too much to take on? Have the medicines that make me gain weight change minds? Do the humiliating truths of the basic life & personal care & lack of force someone's decision one way or another? Is the real me, not cropped & photoshopped so different that offers & futures come down to that? The real me? I don't know if I want to know the answer. Just like this simple picture of my AM/PM medicine strips is made to look prettier, cooler looking...not as boring & honest as the actual 'weekly filling of the pill strips' that I hate doing just too much for someone to admit into their lives? I honestly don't know.

 

Sides of sides

I just watched Bridesmaids, & had no idea it was as serious as it was funny. I often feel like the main character-left behind while everyone else is married with 7 kids & perfect jobs, etc. Of course that isn't the case-& everyone sees & takes information & life differently. We all interpret the same thing so vastly unique, & as lonely & out on a limb as I feel I know there are those who feel the same though to me they seem to have everything together. This is a painting I did, & put through different techniques just a few tweaks off you get interpretations that are miles apart. I have no answers or solutions to which one is the way my life should o, & I'm not going to pretend that it is easy in any way, shape, or form. I do know that I like each picture for their own merits, pros & cons.