Letter to my illness-day 8

 

Dear Fibromyalgia,

I've started to view you as an alien life form who for whatever reason-low immune system shields-availability of bases & posts around my body-unguarded borders...you chose me to invade & live inside. After using me for many, many years, you busted out of me to let yourself finally be identified (like the being in the fantastic film Alien) close to a decade ago. Funny-you had been using me as a vacation home for years, & in those times I would get really sick with random illnesses & symptoms.

Some years you would go skiing in my throat & glands...I would get strep throat yearly during your trips, & when you committed to buying the ski condo & all of your financing came through I became a carrier of strep throat, & you then started really almost annexing my mother. She kept getting strep, taking antibiotics, getting better, then starting all over until her doctor realized a carrier was afoot. He asked her to bring in the entire family to be tested & of course her gut told her it was me. She had been getting postcards from you since I was a few years old. You took a long winter holiday when I got mono, this time touring my entire body, taking time to really see the sights. After that visit I never really was the same. Deep down I feel there is some connection to that illness trip & fibro-after that my body never seemed to recover. After that you came to visit much more frequently, as if you lived part-time on your planet & the rest on me. I never even got a t-shirt! No hostess gift? Really bad manners!

You set up a permanent vacation home in my uterus & started visiting monthly when I was in 6th grade. You had starting getting serious with endometriosis & that little dalliance cost me untold surgeries, insane medication treatments like birth control at age 12 which never helped & only kept me nauseated for months & did the opposite of what it was supposed to. Instead of stopping my periods you & endo revolted & I was having 2-3 periods a month. My doctor was such a prick too-saying 'oh no, you're just spotting'-so I made my poor mom take me back in to make him examine me to which he said 'well, you aren't spotting-this is a very heavy flow' which gave me a bit of temporary delight! He would later go on to gift me with such gems as 'if you have a hysterectomy you will fall in love & no man will ever love or marry you' which is MAYBE why I married someone I shouldn't have & of course ended up divorcing...I think you were up in my brain by that point. Why else would I do such a foolish thing just to get back at said doctor? I found another doctor who indeed did the hysterectomy, only after 3 others refused to do the surgery. They didn't want your theoretical blood on their hands.

After endo split I seemed to be better. Your hiking trips in my vascular brain systems would leave me with migraines, & your float trips in my stomach left my bladder & colon in quite a state-I never did get my security deposits back by the way-but you did seem to retreat a bit. Maybe you got depressed after I seemed to defeat endo. You guys hooked back up for a little while & I had 2-3 more laser surgeries, & endo had been left behind & continued to grow in my sciatic nerve notch, & almost perforated my colon. By that time you had started drilling in my left sciatic region & I spent so much time having my periformis muscle cut & that major surgery, going & fighting with a pain clinic who ultimately (after you evaded them) couldn't figure me out & thought I was just crazy & that it was all in my head (little did they know you actually were!) & various nerve tests, more treatments, etc.

You built a beach house in my bladder when you met interstitial cystitis (IC). Not having insurance then was such a treat! My defense team spent so much money fighting too! Poor team had no clue what they were up against! You & IC still see each other & I think you always will. Kind of one of those see each other every 6 months kind of deal, huh? You finally declared yourself & opened up Area 51 about 8 years ago. I fell & had boxes containing reams of typing paper (100 or more pounds) on top of me, pining me to the floor while in graduate school, & after a local clinic sent me to an ortho, having MRIs, bloodwork, you know he usual suspects he ruled out lupus & found you. You cost me friends, which still stings, lost me jobs, dignity, grace, humanity sometimes. Instead of going out to dinner, the movies, weddings, births, etc I stay in with you & let me just say you are a shitty companion. You've dated depression, anxiety, flirted with MS a lot...you get more action than I ever will! I would ask to live vicariously through you but...gross. You've immigrated to me 100% now. You aren't going anywhere, are you? Do you ever feel guilty? You must really be the scary kind of alien, not the ET variety. If only I could disguise you. Dress you up & hide you among Chai bunny's stuffed friends. I feel like (in the little painting above) after you came out, I just had to surrender my life & old world to you without being able to really fight-I will always continue to fight, but that battle in graduate school, lying on the thin, dirty carpet I lost. I started just weeping, which my old friend interpreted as my frustration with my job & thesis trouble, not knowing I saw the real face of you-in your terrifying strength, & knew I would never be the same. I saw my future in your eyes, & my tears were more for that than pain streaking through my body.

So maybe you could throw me a bone & bring me a GOOD souvenir one day? A snow globe at least? Even a map of your adventures could be used to study, maybe even make breakthroughs. I know we will never, ever get along, but maybe you could think about a ceasefire every once in a while?

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Day 7-the waiting room worth waiting for

As a chronic illness/pain patient there are so many different things that change a simple couple of hours in a waiting room can go from a normal experience to a painful, flare-inducing, long lasting effects kind of scenario. So many of us have things we won't leave home without to make the torturous wait a bit easier-for me, noise reducing earbuds & my iPod are number 1-& I even would bring a light blanket or a sweater in the summer as hours under the A/C vent are enough to leave me wanting to wait outside on the hundred degree curb. As much as we prepare, there are things far outside our control-& here's where day 7's prompt comes in-redesign a doctor's office/waiting room. Other than the doctor coming to us, here's a few things I would change.

1-seating. Chairs of all kinds, primarily ones without sides or room enough to be able to pull your legs up & sit lotus style/Indian style. I cannot tell you what fresh hell awaits when I sit for more than about 3 minutes with my legs extended down to the floor. Lightening bolts through my sciatic nerves from my back down through my toes & back up-so that is always the happiest sight for me-big, wide, fat chairs.

2-a no smell zone. Strong smells (pleasant ones even) can send a brain's pain center into overdrive-so somehow magically erasing anything from perfume/hand lotions/smoke off of people as they come in would be fantastic. My last office before moving had people smoking outside which was fine-but as they walked in the breeze would gust the smell inside & patients started to crumble.

3-Other than lovely, no-fragrance candles, a soft lighting scheme would be great. Nice lamp light is so much better than harsh, overhead lighting. My last neurologist could come in & see how the lights bothered me & would automatically dim the lights-heaven. Obviously in a waiting room you can't really do that-but lamps would cut out so much glare. A girl can dream!

4-little things, like a basket of blankets & throws to updated magazines & books. Many of us have to be driven there, & I always worry about my dad-did he bring a book? Are there fun magazines for him to read? Could he just stretch out & take a nap? Our caregiver's comfort is also a factor-& having a huge selection of magazines would be great. Even a wifi hotspot, water, or coffee corner would be great.

 

 

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Day 1-why I write/social media

Welcome to day one of the National Health Blog Post Month! NHBPM from WEGO Health will have bloggers posting 30 for 30-a blog a day for November, using prompts to guide them. Today the choices are: why I write about my health, or what I like about social media/the Internet/online health communities. I actually am going to combine these today-as my yesterday/Halloween is a perfect fit.

My pain tends to be worse at night, so my day usually is late afternoon through early morning. I sleep when most people are working & am up all night. I started blogging-usually after midnight...after seeing how a soldier with PTSD was told that blogging & talking about his life could help. The show was the PBS show Sherlock, the soldier Dr. Watson. It seemed to help him & so I started doing a picture a day/blog. I use photography as a coping mechanism, & so doing a picture a day blog seemed like a good fit. Example? Tuesday night. Mom & dad had gone to see my 2 nephews & babysat while my brother & his wife were out. It really depressed me that I was stuck at home, not going to a great costume party, or seeing my adorable nephews, & not out buying candy & decorating my front door for kids. It was a normal night inside, as usual. Mom brought home 2 cute sugar cookies, & determined to not be sad I started taking pictures & created a happy Halloween picture card to send to my family. After finishing that, I started painting using the ArtRage app on my iPad. Being able to pull up all sorts of various paints/drawing pencils/art supply apps (without the mess or expense) has become a lifesaver to so many disabled people, whether they are physically or emotional handicapped. After sketching out the flower I started painting it using watercolors-this specific app has a feature where you can bring up a photograph to refer to & actually pull colors from it to paint with. It is as close to painting as you can get, & there's no way a certain fuzzy bunny can jump up in bed & mess up wet paint.

Around 2 AM I needed a break so I turned to AMC's Fearfest Halloween marathon & as you can see the screams of the actors had her ears raised most of the night. I watch a lot of tv & Netflix streaming movies, & it so helps me refocus my mind off of the pain. During a commercial I went & took a picture of the gorgeous full moon. The yard was bright with reflected light, & I just stood in the chilly air for a bit in the silenced glow. After hours of terror, I fell asleep around 7 AM. Dad woke me up letting me know my brother & family were coming by, & after walking the 20 steps or so to the back porch, dad & I watched the first of the hilarious Zombieland as mom got the house baby friendly. My sister-in-law & my 1 & 1/2 year old nephew were dressed as Lucy & Charlie Brown, & my brother was Obi Kenobi & my nephew was a perfect blonde Luke Skywalker. It was if they worked out how to get 2 of my favorite things from childhood together meeting! I was so sore after so came back as they left & watched more Fearfest, read some more of my kindle ghost story, took another moon shot & inverted it, & as a treat lit a ton of candles.

I got depressed again & so I reached out to my online community. I cannot stress how much having someone who can relate exactly to what you feel physically & emotionally helps. I know at any time of the day/night I can find a friend, online, who I can talk to-it is such a great feeling. Having that accessible network is crucial to coping & survival. Without being able to gt out my emotions & talk I would be an absolute basket case. I'm so lucky to have hat-I can't imagine being housebound without the technology of today. I consider myself so lucky that I am sick in a time where I am never alone-there is always someone I can reach out to-as awful as life can be I am blessed with that knowledge.

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Windy days out

Today was a good day. After listening to the wind all night, I went to the door & it was so gorgeous that I went & sat on the porch for about an hour. Mom & dad were out so I shared the porch with their cat Macy. She lets me hold her upside down like a baby, & we sat & watched the trees shake through the sky. Our neighborhood has really beautiful trees-& with the 20 mph winds the sound of the different leaves moving is hypnotic. In the backyard there's an archway with a bench & I discovered a nest which thrilled me. The arch leans like the St. Louis arch too heavy on the left side. Underneath there are big stones with butterflies, bumble bees, & dragonflies in slate blue-grey. Just being out & taking pictures was so therapeutic.

I love the textures of the branch on the right side.

The nest from the outside...

& inside.

A butterfly stone.

The leaning arch...

& the pretty wrapped, climbing vines

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Happy Anniversary Lessons

It's my parents 49th anniversary. After the things they've been through & survived-it gives me hope that that I can make it. After the great neuro visit other than the decision to not do spinal shots for a bit mentally I'm feeling more sound. That things might just work out. He did a nerve test that had me using a walker for days after & completely bedridden. Not fun but necessary. He felt I had MS but we reassured him that my spinal tap, etc came back ok. It's scary that my drs see this possibility after having me squeeze their hand & I can feel my strength just not where it once was...& I can sense it in their mannerisms. Alas, I loved the new doctor-he kept me at my pain med regiment, which from his nurse I understand I'm only the 2nd person he has written high power meds for-she said he felt I was sweet & trustworthy & was knowledgeable about my conditions-& that I wasn't out to take advantage. It thrilled me that he saw that in me. My little purple house is coming along slowly & Chai bunny has made it her own. She loves getting in bed with me, searching for treats I keep hidden under a pillow. I love having privacy but also having mom & dad only a few feet away is comforting. Sorry if this seems disjointed-it is. I am. I've been so exhausted I can't seem to do much of anything after seeing the dr a few days ago. That's ok-if anything my parents have shown me not to give up-through extreme economic hard times. The 2 year illness & death of a child to cancer. Through numerous moves-so numerous I can't count. To the usual family strife & reconnecting. To real life. Happy anniversary mom & dad, & thank you for showing me lessons in surviving in real life & time. I love you both so much.

 

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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.

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-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

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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.