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.

Posted with Blogsy

Hope through Coping

Today starts the Invisible Illness week! The theme is Visible Hope-finding hope in the midst of pain. For me I've found that having coping mechanisms is crucial in getting through a pain-filled night, or during the wonderful but stressful holidays, or the days anxiety & depression seem impossible to escape. One major thing that brought me out of the dark, lonely space that is housebound living caused by fibromyalgia & friends is photography. After a life of living, working, & traveling overseas & documenting everything in pictures...going from being out in the big wide world to inside a house 24/7 was so difficult-but a year after becoming housebound I started taking pictures with a cheap, non-smartphone. It was so liberating to see the face of pain staring back at me...to see this invisible pain visible. Now I take pics of everything in my small world & I'm always stunned to find how many things I find just in the small 4 walls around me. An example? Chai bunny in bed with me after she patrolled the bed, making sure I was ok.

Having been an art student I hadn't been able to paint, draw, or much of anything artistic until I found the many art apps. I can now draw, paint, sculpt, etc. on my iPad. There are great apps covering every medium-watercolors, oils, etc. in every price range-I got most of mine on sale for 99 cents or less. After getting an iPad a few years ago from family opened up the world to me. I've discovered my love of art again through the mentioned apps as well as art history-I can tour museums & see artwork from my favorite artist who had severe chronic pain most of her life-Frida Kahlo. Her paintings showing her pain in vivid detail are so inspiring to me. This painting is a little drawing I did earlier...with fibro awareness color purples of course!

I miss star gazing & seeing my moon most nights-I can't always make it to the door to look up into space, so I use the amazing Star Walk app. I can hold the tablet over my head & see what is all around me in the real time feature-& watching meteor showers without being outside is almost as good. Finding ways to see/do things I love is crucial to my survival-if not I think I would wither up & disappear. Some nights I'm not able to pick up the iPad above my head yet I can still explore the sky using these apps.

Many people are playing games on Facebook-I haven't gotten into that but I do play words with friends, or my favorite zen-like game called Kometen-comet in Swedish I believe. This little comet is in my care, & I orbit him around planets to eat space junk, teach him how to make loops, & send him zooming around through the stars. That game can calm me down & have me & my comet playing forever-I get lost in the game & it really focuses my mind off the pain & panic attacks.

I have rediscovered reading-it became harder & harder to hold books open...that seems so ridiculous but I've heard many others having the same problem. I got the free Amazon kindle app on my laptop, & they have tons of free books you can keep, or now most libraries have ebooks you can borrow, & you can check them out without having to leave home. That opened up a lost love-I used to read 2-3 books a week at times, & then went 4 years without reading anything. If you have a cheap computer you can get all that for free-I know most invisible illness patients have money issues as medications, doctor visits, procedures, etc. cost so much & so many things aren't covered by insurance. Even me on disability-you can't imagine how many things still aren't covered. Finding things like this are fantastic!

Of course Netflix tv & movies are a mainstay-when the morphine isn't touching the pain getting lost in a film doesn't take pain away but can get me so immersed in the story that I somewhat forget the pain for a short while. Also listening to Internet radio & free podcasts of a million different topics-including my love of space-are so easily found now. Technology has opened up the world for us all-& for invisible illnesses it gives us friends through Facebook, twitter, etc. who understand & identify, & is a valuable resource for so many things.

Finding things you love & ways to incorporate them into your life is crucial to have a more meaningful life-having outlets to help you grieve, laugh, forget, learn, & get lost in was something that honestly saved my life & my sanity. Finding hope in a dark place is possible-not easy, but possible.

Posted with Blogsy

Tangled up layers of a person

It is hard to know when I see myself which parts have been there all along, which are just coming out, & which are just the way my persona & body & soul are coping. I wrote this earlier tonight, as the house was getting ready to be shown to sell. Me behind the filth, the perceived anger, the not included in decision making then when I get 'angry' what you see. Me behind the 'how can you live like this?' me behind the purposeful lives of my siblings & their families. Me behind the failure. The pain. The searching. The lost. The forgone conclusion.

 

Art under a microscope

After taking some pictures that didn't come out as expected, I saw something in them I wanted to explore. After putting them through a litany of treatments, these two showed something about my anxiety I couldn't/can't yet explain.

girl with everything she owns on her back lost on the dark side of the moon.

 

A bat with a face (look close!) captured in the orbit of a planet. If he escapes he burns up in the surface or flies into space, weightless & lost. Kind of reflects my stress dreams, minus the cool space travel.

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.

 

Missing House

Yesterday I went to the neuro. After running the tests 3 times & my proteins being slightly elevated I have for now (again) been ruled out MS-wise. Of course we were thrilled, & after the dr gave me 2 shots in the sciatic nerve & pinched nerve. I was really hurting-I hadn't realized that for me/a fibro person, the spinal tap took a lot more out of me than I thought. Our cable went out, & sadly I missed the series finale of House. Look, I know his character was an ass, yet I grew to love him. Better or worse parts of how he acts reflects me sometimes. I guess having the world see how chronic pain can change you helps me cope somehow. I love & will miss how he, as well as my real doctors see me as a pattern & puzzle for good-not something to chuck out & refer endlessly to other drs to get me out of their offices. Being dismissed because you are too complicated is a special kind of rejection hell. This pic & poem (instant poetry gives you 35+ words & you make something with it) was taken tonight, after I slept about 19 hours. Enjoy & excuse the crazy. :)

 

Bizarro day

My 'days' are strange-normally I sleep a lot during the day as my pain gets worse at night...& there's better tv on. ;) I was downstairs with my parents cat Macy-she's been really sick & so while they are gone I slept downstairs. It was great as I could prop my iPad up on the side table & was able to recline sideways so much easier than upstairs.

I started getting so tired & ended up sleeping half the night. Macy woke me up & around 5AM I went & checked the mail, which ridiculously enough exhausts me. After just a bit I fell back asleep. Today was the day my morphine was due, & with dad gone, he had our lovely friend Brenda pick the Rx up & bring to me-she is a huge reason in the cons part of moving. Even though I don't see her much we email & text & keep in touch through the parents. I knew she would be bringing the meds inside & I was trying to stay awake to see & thank her. Of course I was dead asleep, having the worst stress dreams. This is my painting of it-using a great new 50 cent stylus pen. I love Amazon!

So a few hours later Macy wakes me again as she too was dreaming-& she wakes herself up crying in the saddest way ever. She sounds like a haunted duck trying to bring her head up from under water. Maybe we were having the same dream? Completely out of it I see a text from Brenda, & I go to the kitchen & see my meds with the greatest thing ever! Donuts...Homer Simpson would be proud. One was a cream filled chocolate dipped one with bright blue icing dots, the next a four round tiny ones combined in a clover-like design that were raspberry filled. So good. & the best & last-a heart shaped donut with a blue icing smiley face! She told me later she thought that having sugar to make the medicine go down inspired her. She is by far the best 'babysitter' ever! Just without question. I'm now full of sugar & morphine, have almost forgotten about the awful stress dreams & painting. I try so hard to see & enjoy to the fullest the good surprises that pop up along my way. Thanks Brenda. :)

 

The Windy Shadows

As I watched the 2nd to last 'House' last night, I realized we actually have more in common than just chronic pain. & dependence on meds. & grouchy attitudes at certain times. ;) I love mysteries & puzzles as much as his character, but of course in different ways. I've always loved mysteries-I think my love for the Mystery Machine & the gang from Scooby Doo started it, & I have never looked back. At least 85% of my books I own or borrow from our incredible library (which lends loads of ebooks!) are mysteries. My dad & I share that, & our many tv shows we both love involve mystery, & we always put in our bets of who we think did it early in the episodes. My art, photography, & poetry involves a huge amount of abstract mystery. I enjoy the word play & working with word combos that involve a ton of deducing skills. As I've gotten to be a human puzzle & try to put together the unique pieces of my illnesses, I've gleaned skills. Anything I read, watch, even hear I use as tips or tricks in coping. Some are as simple as focusing on an intense film & others are borrowing survival skills from survivors & detectives. As I watched the really brilliant PBS 'Sherlock' tv series last night I felt it so much-I had a fever & was all covered up, watching the pair of them on the moors looking for a giant hound & having all the lights off I felt like I had the perfect mystery combo. Sick girl, puzzling story, windy shadows, cat knocking over a glass & scaring me to death (as the horror movie cliche goes) as I huddled under blankets watching Baskerville hounds. I recently got all the Sherlock stories for 99 cents, & am also reading at least 4-6 other mystery thrillers as well, & gaining every bit of wit & wisdom to take away with me on this insane journey.

 

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-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 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 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 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.

 

 

#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.

 

 

 

Finished reading my 2nd book!

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 ;)