Monday, April 30, 2012
Sunday, April 29, 2012
Saturday, April 28, 2012
Friday, April 27, 2012
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
1-humility that comes with things like personal hygiene taking a backseat at times
2-pain that nothing can quiet
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
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!
Thursday, April 26, 2012
Wednesday, April 25, 2012
Tuesday, April 24, 2012
Monday, April 23, 2012
Saturday, April 21, 2012
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.
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:
Wednesday, April 18, 2012
'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.
Tuesday, April 17, 2012
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.
Monday, April 16, 2012
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
Sunday, April 15, 2012
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.
Saturday, April 14, 2012
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.
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...
Friday, April 13, 2012
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.
Thursday, April 12, 2012
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.
Wednesday, April 11, 2012
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
Monday, April 9, 2012
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.
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.
Saturday, April 7, 2012
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.
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.
Friday, April 6, 2012
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
Wednesday, April 4, 2012
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.
Monday, April 2, 2012
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.
Sunday, April 1, 2012
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.