Spinal tapped out

Wow. So I knew the spinal tap would be one of the least favorite things ever, & what got me was the intense headaches for days after. You had to stay reclined to keep the headaches (while your spinal fluid came back up) at bay-yet for a person like me with bad back pain, staying still (even with loads of pillows under, behind, beside, etc) it was a rough week. Today finally am feeling back to my normal. Parents left today for a few days, & I can't say it's been an easy start to this Mother's day. I find out all results from the tap, bloodwork, etc in a week, but no news until then. A great surprise was winning a 'superlative' award from taking part in WEGO's health blogging month! That made my week. I won for best use of visuals, which thrilled me as my photo blogging has become my recovery process. :)

 

 

 

 

My last day of the #HAWMC month challenge

Today, this last day of making up the missed days from this month, we are to find a picture on Flickr & connect it to our health focus. I'm cheating a bit...but let me explain. Last night I went out to take a picture of the super moon. After getting back upstairs & into my room, I started to fall. I caught myself & only fell halfway-ish, but the little slip ended up leaving me bruised, my toes bent backwards, & all of the force of it jamming into my pinched nerve. It hurt, & I woke up so very sore & tired today. I laid down on the heating pad which helped, had my iPad on Pandora radio (a channel based on instrumental music), read on my kindle, & played Words with Friends. I was in pain but I was content. I had the perfect position to have healing heat, music, a great book, & a good game going where I was actually keeping up. I fell asleep. Hours go by & I wake up. My body & back feel like I've been in a car wreck. I can't manage to get up for an hour. I take my morphine & wait for it to work, & I reflect back on today, with my moment of contentment.

 

 

I write about my health because...#HAWMC/WEGO makeup blog

I write about my health because it became an outlet, using words & my self-documenting pictures to get out the things inside me. It became therapy. To pour out my twisted mind & soul & pain keeps things from becoming so bottled up-so crushed without oxygen that I'm ready to implode-from becoming a human bomb & taking out a city block. Figuratively of course...please don't put me on some government watchlist! When I became housebound my parents very lovingly became exhausted from my needing to grieve & get things out. The few therapists I tried said I was pretty much doing all I could do & when I showed my last one my pictures, he said that was the best thing I could do-to blog through my pictures & words. I love that I can educate as well-for invisible illness people usually don't look sick, & I wanted to show the times that we actually do. Very often I'll come downstairs from my bedroom, & as my parents glance up at me they say things like 'honey, you just look like you're about to die!' Lots of times it's that I'll wake up in the middle of a dream & still be in that sleeping/waking nightmare that takes awhile to get out of. Fibromyalgia patients don't get the delta wave sleep most of the rest of the world gets-you know the levels of sleep-REM, etc. Sleep labs have shown that we are missing our bodies delta wave sleep stage-that is the stage of sleep where among other things our bodies heal ourselves. This is science-not something I read about on some sketchy website. When I wake up from the middle of a dream & not slowly wake up normally it exhausts me. All of this is to say that my blog is for me selfishly as it's cheaper than therapy...for people who are coping with illnesses of any kind as well...& to educate. What started as just a picture a day turned into me writing as well, although there are times a picture says it all, or I just can't physically do anything else. Thanks #HAWMC (health advocates writers month challenge) for getting me to branch out this month. This is my next to last makeup post, & I have loved it!

 

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.

Time capsule-makeup day 1-#HAWMC/WEGO

We are to put together a time capsule about our specific health focuses, illnesses, stories to be opened in the year 2112. Of course I would provide news clippings of medicines that were used, treatments available, etc. All of the cold hard facts...but much more I would let my pictures, my old journals from when this illness really took hold, my personal story put a face on fibromyalgia. I would include my normal daily life. How I wrap into myself, iPod on & noise reducing headphones in-dad being my ears for listening for the nurse to call me back-what music I listened to in waiting rooms. The paintings I did when the pain got so bad I couldn't sleep. What movies & books I took lessons from in survival skills. Most important I would let my self portraits speak for themselves. They would be the face of what this does to a person, & I would include pics from before I got so sick as well, though I look mostly the same-but showing my life overseas, teaching, being a productive citizen of this country.

 

 

 

 

 

Last day-#HAWMC/WEGO wrap up

We are to discuss the things we loved, prompts we hated, fellow bloggers, what we learned, etc. like this pic of berries I ate earlier, I feel this really sums us up. Sweet & funny, bittersweet & raw, with sugar the medicine goes down easier, etc. I hate that I started late, & that on a few days I was too sick to blog, although I will be making them up, which thrills me. I loved the pick a page-pick a sentence & write about it...probably my favorite prompt. We got to be direwolves, & that was fantastic! I even really liked the haiku prompt & it fit perfectly with the day I had experienced. My favorite blogger by FAR is Nuria & her brand new blog Lupie Cave. I had met her on twitter & she got brave, started blogging, & her 2nd or 3rd blog she was one of the top 3 of 3! She is an amazing writer & has blogs in her native Spanish & one in English! She is a huge inspiration to me already. After years of hiding she has come out in a big, bold, brave way & I love her honest courage. I will keep around a few prompts, the book & haiku I mentioned, the word cloud, etc. I'm excited to keep going on my make-up missed days. Thanks WEGO for pushing me & helping me grow. You helped shake me up out of my rut!

 

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