And so this is Thanksgiving

Something has broken. Something snapped-the straw has broken the camel's back. Hope has disappeared & the bleakest, blackest darkness is here.

I was blogging daily for WEGO & the November NHBPM (national health blog post month) & was into day 5-10 when the flare came on, & for the first time I understood what 'losing consciousness/feeling' meant. The level of pain was so bad it simply wore me out & I couldn't stay awake. By no means was it peaceful slumber, rather sharply stunted sleep between fits of electric nerve endings firing off at insane intervals. Nevertheless, I stopped blogging. I stopped being able to do much of anything. Going to the bathroom was work. Making food was a joke. Something changed when the last weather related change came, & I came undone.

A Czech friend had asked & sent her PHD paper for me to look at-having been so eager to help I now haven't even opened it. A friend L noticed I had stopped communicating & sent several gorgeous pictures of fall leaves-I only saw one, & for me it represented how I felt. Instead of the beautiful colored leaf it was in black & white with almost silver overtones. He too lives somehow outside yet exists inside life. He understands the suffocating loneliness. He sees things skewed & different than the normal family bound individual.

Having not seen my new neurologist lately, I saw him Monday. My old dr I saw every month & sometimes every 2 weeks. Deep down I knew he wasn't the one-he wasn't treating me at all, rather seeing me every 2-3 months & on HIS timetable just giving me morphine. He left every appt abruptly, never returning yet leaving me alone in the room for 30 mins before his staff found me & gave me a random appt. so after barely showering, my clothes feeling so uncomfortable & seeing in the light of day my hair almost half grey which stunned me I went & waited. He came in, asked me about side effects-I think he had nothing to say yet felt he needed to & just asked a random question. I mentioned my face-I have periods where my face has the bright red butterfly rash that appears & lasts for days much like the Lupus butterfly rash. I mentioned it as my face was so hot & so red & I felt surely he would notice. Nope. He asked if I had Lupus. What? You, my neurologist, you're asking if I have lupus? Stunned I answer no, I was tested for that years ago, & explain that fibromyalgia often produces this same rash much like lupus. I explain that to said neurologist. Dad had come back into the room at that time & was just waiting with me, as he hen just stood up, said he would be back, & after speaking/listening to me for maybe 3 minutes leaves us, & his nurse comes 30 minutes later with half of my prescriptions & an appt to see him in 3 months. Right then was when this thing broke. I had gone for 2 months without seeing him & after that pitiful excuse of a visit he now doesn't 'need' to see me for 3 months? The nurse/staff says my morphine isn't due for a few days so I can't get the RX now. Let me explain-that kind of RX comes with a special 'do not fill until this date' kind of safety thing. My old dr gave me my RX a week or 2 before trusting & knowing I wouldn't & COULDN'T fill it early. As we get in the car & look up the dates we see I will be out of morphine this weekend, & as we know their office is closing Wednesday for the holiday dad calls & asks shall we pick it up then? He is told no, sorry, you will have to wait & call/pick it up the following Monday. Dad pleads, saying 'but she will be dying by then...' only to be told sorry & be hung up on. Obviously I will never go back to him, but what now? I have seen so many drs. I have been sent away by so many as a challenging case. I can't stay on this merry-go-round of piecemeal health care any longer. For the first time honestly my hope in anything is gone. I have nothing left. With no family or kids of my own I feel so alone. So lost. My old best friend was in Colombia & a girl/dalliance kept saying to him 'just be, just be!' & we always laughed about it...but when literally just being leaves you exhausted, without help or any hope to speak of, what then?

 

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Day 10-laughing out LOUD

So this is a LOL post-which I often forget means not just laughing but laughing out loud. I laugh a lot but I don't laugh out loud, loudly...all that often. When you're in pain all the freaking time even when I laugh I don't out loud all that often-from exhaustion & pain. The last time I really laughed was about a week & a half ago when my darling nephew & brother were over. We were outside & he was playing in the potted plants, & mom was showing him a (planted) flower, & he excitedly plucked out the flower with a little mound of dirt & roots with it-his little one year old face was so pleased, & mom & I lost it. He then started laughing as we were laughing & it just got funnier. He is so precious.

Chai bunny keeps me laughing-she is 99% personality & 1% sleep. No, she even has personality when sleeping. She wakes herself up thumping, then is alarmed & keeps thumping. Last night she moved one of the 2 bunny slippers (Sugar) to her food & later went over to eat-instead of moving Sugar she stood on the back foot part-leaned around & ate reaching her furry head around & sideways to reach the plate. Earlier we had gotten dad to help wash all my bedding & halfway through she jumped up on the bottom sheet & licked away. I finally had to just sit & wait for her to finish. She is THE joy in my life.

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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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#Listof3 Day 5-national health blog post month

 

Today is a very difficult day to write, as I'm going through a flare-meaning every pain is felt more, I am so exhausted I cannot keep my eyes open for days at a time, & it seems even my emotions hurt. As I sit here crying, I think of a list of 3 things I'm thankful for/inspired by/excited about. For me-in this dark, cold moment, I am inspired by these 3 things.

1-my darling, sweet, amazing house rabbit-Chai bunny. Her boundless joy for life inspires me to keep going. To raise my hand to continue petting her even though my hand is cramping & tells me I'll pay for overdoing it later. That even though she herself will cease to breathe, her happy joy will live on.

2-our newly discovered backyard turtle, who we named Pepper...life must seem so frustratingly slow at times. Even though he knows nothing else, surely he must notice how fast the birds in the yard hop around, rise up & fly 6 feet over, or swoop down to grab bread crumbs I leave out. He inspires me to accept myself-even when it seems everyone around me can fly so far & so very fast.

3-it sounds crazy but my paints inside the apps that I digitally paint with. Even though they look so beautiful in the little color wheel that gives so many choices-when I spread those watercolors out, it never ceases to surprise me a bit on how gorgeous they look even watered down. One stroke of color-even a muddy tone-conveys so much-even the darkest ones. I'm inspired just in how the colors themselves change-develop-& blossom on my digital screen. When you put one next to another how they either harmonize, or bring out the true colors when paired next to their complementary color, or even bring out the beautiful shades in the lighter colors on either side. We all play a part even if it is to support the other.

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What's your bag? Day 4

Since I'm at home all the time, my bag/purse is the space in & around my purse on my bed. I'm not specifically bed-bound, but since having anything-like the arms of chairs-touch me causes pain, the most comfortable place is in bed sitting up. That way I have a stack on pillows behind me if I do need really soft support & pillows under my knees for when I am sleeping-& they double as a make-shift tabletop, iPad holder, place setting, etc. I am addicted to lip balm, such as Burt's Bees, the Merry Hempsters, or just good old Chap Stick. A friend of mine sent me my newest obsession a year or so ago, & it now serves as my all purpose balm. It's called Smith's Rosebud Salve-it comes in an adorable tin & I use it countless times daily as hand lotion, lip balm, as a skin softening agent, the uses go on. People with fibromyalgia often have a broken pain center...for example my brain can take a fan blowing on me as a painful stimulus-or a smell like cleaning solution as an assault. This Rosebud stuff has a very slight floral fragrance but so light it doesn't set off the pain alarm in my head. Any kind of extrasensory influence can easily transform as pain, & so certain things just make life easier. At the top of my list is noise canceling earbuds/phones. When I'm in a waiting room everything hurts, so having my iPod & earphones are crucial. Even just here our backyard touches 4 other yards, so lawn mowers, weed eaters (the devil's handiwork that is!), & other lawn care things drive me nuts, so often if it gets to a certain point I put the earbuds in & tune out anything but the music to refocus. In my bag medicine goes without saying, & I keep a nasal/allergy/sinus spray since those systems work overtime fairly often. Hair clips & ponytail holders are a must, as well as tissues & a mirror. I don't wear makeup (sadly) anymore, but I tend to always need a mirror for bunny fur in my eyes. Chai bunny's mark is never far away :)

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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.

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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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TMI Tuesdays-WEGO Health-behind the curtain

Many of you know the basics of fibromyalgia. The pain, merry-go-round doctors, trial & error medications, etc. all of that is a huge part, but even for all my openness & knowledge is power, there are a few things that only my parents know. There are things so humbling & humiliating that I keep most of them to myself. One of those things is the lack of personal hygiene. Often times taking a shower, even with the little plastic stool I use as a safety precaution & the fact that I can't stand for more than about 3 minutes at a time-even sitting down showering is exhausting. Many days can & do go by when I can't shower or bathe, & it's a crushing weight to one's self-esteem. To not be able to jump in the shower is a luxury I used to take granted-or a soothing bath. Things like this that go unsaid make me want to curl up & hide.

 

Feel good Friday-retraining the cogs

I've talked often about this upcoming move. Every fiber of my being says disaster yet I have no choice. Losing my doctors at this critical juncture is too much for me to stand. Yesterday, as my parents were packing, they found & brought down a gorgeous batik bedspread from our time in Indonesia. As the house they bought has a small workshop in the backyard-that will become my home. There's no bathroom or closets, but I've been trying to refocus on the fun I can have semi-on my own again. As I was offered that bedspread, I realized it's not necessarily what I would chose but rather after a few hours of it spread out on the bed in front of me, it started choosing me. Showing me a glimmer of hope of a few things. Nothing will be fixed physically, I am not to be a miracle healed, but I can spread out all my boxed up vinyl records, & life, & at least listen to my records at full blast as the pain washes over me.

 

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'.