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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#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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To be a real girl

Day 3 of the National Health Blog Post Month (NHBPM) is the topic 'I don't know about this, but I'd like to', & today for me that is without a doubt How to be/act/respond like a real, normal, functioning person. A little while back, mom & dad had over a family friend, & of course I told them I would come over the 20 steps through the back yard & spend some time with them. After the fact I came back to my little house wanting to crawl under my pile of clean clothes & never come out. I was deeply embarrassed, & it stung badly. The friend in no way probably meant this at all of course. Here's the humiliating details with names & dates changed for those involved. Well, all but me. O. o 

After staying up all night per my usual painsomnia, I had just gotten to sleep when my alarm went off. I got up, took my morphine which would mean a gap in my normal routine later but that's the cost of doing business in my world. Walking through the back door I saw the friend's face change. Eyebrows raised, shock registering before they could help themselves, & as I went to hug them it was if their body forgot how to hug. Acting as if I hadn't just hugged a marble statue i tried to smile & sat down. The poor friend then blurted out a comment/observation about my appearance, & let me just say it came out the exact opposite of the intended tone. Answering the question, it hit them how it sounded, & as dad started to laugh (as he & I had discussed this just a day or two before) & I was really glad to have an excuse to change the subject. It was truly about as low on the humility scale as i'd ever experienced, & i could feel tears coming, but I managed to hang on to my last bit of dignity & not cry. I also didn't want to make them feel uncomfortable-so i just sat down at the me-painful table. Physically sitting in normal chairs kills me, but I didn't want to make the situation more awkward, so I said nothing & sat as we had a small bite to eat. Getting more & more uncomfortable, I squirmed around like a child. The friend had been going through some tough times, & I had seen something that reminded me of their family & I had made a note to tell them-as I tried to get the words out the lack of sleep, pain becoming more painful, & fibro-fog clouding my brain left a fragment of a sentence hanging out of my mouth. I couldn't make any ordered words continue as they stared at me-totally lost I just stopped talking & thankfully mom's plentiful storytelling continued as I stuck food in my mouth to replace my garbled words. Ugh. A few more just odd/half insult sounding things were said, again-they didn't mean them but regardless-my body couldn't take anymore & my heart was already sagging under my dejected weight, so I released everyone & left, smiling as I said my fake high spirited goodbyes. Sinking into bed Chai bunny got up with me & positioned herself under my hand, waiting to be loved.

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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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Finality in Lights

I love having my new, own place. Chai bunny has loved exploring & ripping pieces off the maze of cardboard boxes, climbing up my 7 pillow stacks, searching for the previously hidden tootsie roll bag with her massive hound dog nose, & taking her stuffed friends all over to show them their new home. We put up a string of lights as a banner on my bed, adding some whimsy & light to my otherwise kept vampire-like dark I keep for my insane fibro-sensitive eyes. Otherwise I've felt I have had nothing to say, nothing to feel, just nothing. My doctor is good, although his wanting to skip a month in visits & not really planning anything new in the way of treatments is a bit worrying. I guess I feel that like an elderly person going into a home I've gotten to the place in a figurative sense I've come to die. That's ok, but just so final. One of the main reasons we moved is to be closer to family, for my parents know after they are gone I'll need help just existing...though I worry & feel badly for whoever gets saddled with the burden of me as a professional sick person. I hate feeling or thinking like this, but it comes to me when I'm sleeping through stress dreams & is on my mind when I wake up. Hopefully Chai bunny will continue to jump on my bed & wake me up with her fuzzy face & big eyes watching me as I open my eyes.

 

 

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Views of my visibly happy afternoon & purple house

After walking through the backyard to my parents/caregivers house to pick up meds & magnets, I walked around the yard looking for our adopted outside discovery, Pepper the turtle. I didn't find him but I did smell the gorgeous flowers left behind from the previous owners. My back was going out quickly, so I dashed (a very slow dash...) home & after resting put up my favorite Wilco poster from my brother with my super heavy magnets on my fridge.

It's right next to the soon to be record player orange corner! Very excited about that. I then put on my ultra expensive lidocaine patches-they take a bit of the edge off of pain, though they are $500 for 60 patches-& I have to get my neuro to sign off on them so insurance will pay. Ugh.

My old dorm room white board is on the fridge, where we keep notes-today was hoping our cat Macy gets better-she has badly damaged kidneys & it looks as if these are her last days, so we are really sad. Next a celebration of invisible illness week, & after last week it finally feels a bit fall-ish in the air. Ahhh yes.

I've been in my little purple house a month or so, & for the first time I lit candles. Mom is always fearful of this as sometimes my meds make me sleepy, but of course I'll be mindful. I haven't really been able to use candles since moving in with them 6+ years ago. Amazing how lighting a candle brings me independence & joy-something most people think nothing of & light candles daily-for me it's a huge deal!

 

The candle in the dark as seen from my bed-on the coffee table. I'm really starting to feel this little house is mine-that it is my safe place where my illnesses are ok-that is my skin is hurting I can be naked & not worry as Chai bunny doesn't mind, & being on the back of a fenced yard my windows are safe & private. Being sick sucks, but making small changes to accommodate mean the world!

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Chai bunny's new neighbor

Being housebound I don't go out. Really ever...except to doctor appointments or into my parents. Dad had found a turtle last week when mowing, & today came & told me that the turtle-we think a box turtle-was out running away from the weed eater. Mom suggested I throw bits of Chai bunny's leftover veggies to keep him safe in our fenced yard-but I was feeling ok & actually went out twice-in 107 degree heat index weather. I took a piece of carrot & found the turtle digging a pretty decent size hole to hibernate in, & when I gently lifted him out he/she hissed at me! Very Chai bunny-like behavior. Later I returned & walked right passed him without noticing. Fantastic coloring! He had eaten the tip off one side & came out & started walking. He isn't at all nervous around us to my delight...we are still trying to come up with a name-& me energy to search for him more often.

 

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Fevered dreams & little surprises

After a week of fever, swollen glands everywhere-one even hardening into a small marble under my arm-I woke up this morning after having feverish stress dreams panicked & stuck. After starts like that it's nice to find some little surprises & discoveries. My love of detective mysteries was delighted to find that netflix has 'Cracker' & 'Durham County' on streaming. The forst stars the fantastic Robbie Coltrain set in the UK, the second a strange, twisted, nightmarishly fantastic Canadian series that has moments of last year's 'American Horror Story' from FX running through it.

I stubbornly want to decorate my little house like I used to be able to, & a few days ago got out & shelved about 50 of my vinyl record collection, of course overdoing it in the process. A guy I used to work with gave me all of his record collection-& it's a really, really good one. I got it about 7-8 years ago but never really was able to see all of the records-& putting them up found loads of the Rolling Stones, the Beatles (with posters from them still perfect in the sleeve), the Who, Led Zepplin, & Neil Young-& the wonderful Johnny Cash. My friend & I used to play the side with I Walk the Line over & over again. Swoon.

I found a giant hedgehog, or a Czech 'Jezek' from a class of a dear Czech business I taught & loved. Chai bunny is in love & took to him, licking his furry nose immediately.

Dad brought in my grandmother's old mirror, & even though it isn't up & might not be for months-it's ok. Just having it around thrills me.

Mom found my bedspread/blanket I used in Indonesia, with all it's holes, faded stripes, & soft love clean & ready to have as an extra blanket on my bed.

Last but certainly not least, dad was mowing & found & brought this adorable turtle for me to see. It stuck his head out & started walking, not at all shy. Of course I'm now leaving little bits of veggies & leftover Chai bunny food outside for it, hoping he will become friendly & we can have a proper turtle/tortoise & the hare/nut head bunny fable happen in the apartment! Chai bunny had made a path around the sofa, under the bed & beside the boxes where she zooms around-last night I heard her skid off the carpet & onto the concrete floor as the sound of little paws & nails went across concrete...so she's practicing! All we need now is Mr. Turtle to return! Finally, & with fever I had to go numerous times & stand in my front door & let the hurricane rain soak my face. Having my own front door to open in private behind the house & fence of my family is great. I can stand in just a gown & no one can see my moon face happily letting rain run down my neck & back, for Chai bunny to investigate after.

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My amethyst house

As purple is the awareness color for fibromyalgia-& a longtime fav of mine, dad so lovingly painted 2 walls gothic amethyst, a grey-silver light purple & the other two a dark eggplant color called purple blanket. I love the names of paint colors! He had a toilet & sink put in-I'll use their shower in their house for safety, & we angled my bed against the two white shelves we're using (that mom lovingly donated to the cause) as a privacy barrier in the corner by the bathroom. As I spend so much time sitting/reclining in bed, I wanted it a major part of the plan so I can see the tv, face the love seat for company, etc. I had gotten the black wooden sleigh bed back in graduate school-it has 4 spiral silver knobs on each corner that I adore. Mom & dad gave me the gorgeous batik bedspread (that perfectly fits my queen bed) they got in Indonesia. It's perfect! Chai bunny is loving the huge space compared to the only place she has known-the old bedroom. Though the apt is basically an efficiency it is huge to her! It has a garage door that we are covering with my massive vinyl collection on shelves & an old school pull-down school map. I love that I have built-in shelves by the bed for keeping my cords/iPad/kindle, etc right there in reach. This is my 2nd night & I'm just thrilled! Thanks for all of your great wishes! Also a huge thanks to mom & dad, & my brother for finding the guy to put in my bathroom-he chose a great guy.

notice Chai under the table...

my magic bed

media center & my Indonesian triangle shelf

Chai bunny in bed

Watching the last 'Closer' from bed :)

Record players & shelves

 

Headboard details & gorgeous eggplant paint!

 

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Moving to apt!

An hour-ish Chai bunny & I are moving into our apt/house in the backyard of the parents house! We've been dying to get out there but we had to get fixed in the main house first...so pics to come! Here's the paint colors & my one of a kind Indonesian Batik bedspread from our time living over there...& finally I'll be back in my own black sleigh bed after 6 long years. Much to celebrate tonight!

 

Chai bunny adopted my childhood friend Marshmallow from my dear friend Laura!

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Maybe miracle

After possibly the toughest 3 weeks on record, sometimes you catch a break. After realizing I'll be without meds (quite dangerous) for a two week period until seeing my new neurologist, I left a tearful message to my beloved former neuro, begging for help. Normally they can't give you certain medications unless you see them in person, & I knew my body couldn't handle that drive, much less leave Chai bunny. Yesterday the nurse called, & Dr. T agreed to give me a two week courtesy RX-& a family friend will pick it up & mail it to us ASAP. Until it gets here I'll be nervous, but the fact that people are helping restores my faith in mankind. Chai bunny is doing much better-she still has several mammary tumors, but hasn't has anymore blood in her urine, & is eating & drinking normally. We aren't out in the apt yet, but being close to my parents during this time is a great thing. Dad's been painting my apt-gothic amethyst & purple blanket-the first a silvery light purple & the second a deep eggplant purple-I love it! Mom has been finding all my treasures from my former life & some new ones :). Today I'm resting a bit easier.

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Moving

We have now been in our new home for 15 days-my little apt out back has a ways to go, so I have been living in the house until things settle down. Chai bunny seems to be better after coming very close to death several times-right now that subject is too painful to think about. Leaving my beloved cat Zoe & dear rabbit Amsterdam buried in the backyard of the old house was too much to bear. After physically moving things that last morning for fear of my parents having heart attacks/strokes, my body is still in a major flare. We had to get my last prescription of pain meds in Alabama before we left-& ended up having to go to 2 pharmacies to find them as our usual drugstore was out. The 3 of us & my bunny & their cat rode smushed up in the front seat while we towed our car behind. I would have driven as in past times but with meds & physical condition that wasn't an option. Halfway through the trip-after food orders got mixed up & other typical problems happened-the uhaul broke down. An amazing lady dressed in her nice work clothes stopped & helped us for at least an hour while we waited on help. We ended up spending the night-sneaking pets into the hotel as it was the only hotel around & too hot to leave them in the truck...& that next morning is when Chai bunny became a rag doll, totally opposite her normal feisty demeanor. We finally got here after tears, sweat, prayers, fears, you name it Monday the 16th. I've kept a round the clock Chai bunny watching vigil, while my brother dearly had people here that next morning to unload & take the truck back. We didn't have cable, phones, Internet, etc for over ten days, but we were safe...not sound, but safe. Mom found a dr that just might work for me-neurologist who seems a lot like my old dear Dr. T, but I can't see him for about a month, so we will have to find out if & where I could get meds as I'll be without them for a week or so, & going off meds like that cold turkey is extremely dangerous. The weather here is so much hotter, & mom constantly worries about dad & heat stroke as he can't sit still & wants to get things liveable. Our refrigerator broke last week...we have had loads of these things happen & I worry mom will have a major breakdown as all our nerves are raw & bleeding. Sorry to paint such a bleak picture, but if you know me you know that I have to be honest. This is my therapy-coping-my way to vent. I wanted to catch everyone up & thank you so much for the many messages I've gotten letting me know I'm not alone. More very soon-xxxooo from us

Taken the morning of he move-sitting on the floor trying to get magical strength

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My bed is an island

As I am most comfortable in bed-but not reclining-rather sitting with my legs pulled under me with my back not not touching anything, I plan in my new apt behind the house to be as me-centric as possible. To plan it based on my needs rather than just how it looks, which is a strange mind shift. I'll have a small sofa for family & guests but my new (old) bed will be my comfy universe when we move in a few days...I'm mentally planning ahead so I can make life easier. Dad finished painting my room today, with Chai bunny propping up on the first step-dad's fallen in love. As the walls dry, my bed is in the middle of the room, tv on the floor, & every piece of furniture in the center. Chai bunny loves figuring out where to jump up in bed with me-& is dashing around the room like the busy Binky bouncy bunny she is-& I try to keep my eyes open & plan on how to not bite down so hard in my sleep I wake up with TMJ migraines like today.

 

 

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Sailing away

This is the last thing on my wall. Chai bunny had ripped a piece of paper up, & as it curled up she fell asleep on it-& later I found it & it looked like a tiny sailboat. I woke today realizing in 2 days I get spinal shots & see my beloved doctor one last time. In 4 days we'll be driving to the new home. Seeing this boat sailing off to it's final resting place I see 2 people on the boat-my parents, but I'm nowhere to be found.

 

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All work makes Marnie a dead girl

So as this push for us suddenly moving then suddenly moving weeks sooner is happening, my body has given out. We had/have been saving my room for last, & it was a disaster. 5 years to go through of substitute items as my real ones were/are packed in a box, now 3 states away. Cards, little post-it's, the 'get well' to the 'I know you're dying inside' to throw away, dust off if keeping. 5 years of 3 beloved pets, 2 buried now in the ever fleeting back yard & 1 curious but sick wonder bunny & the fur & dust that comes with shedding, cat litter, etc. All of the huge undertaking that I had to give up from my mail art/pen pals days, letters never answered in physical form but in my mind & heart-when it became too much to write back I would mentally plan a reply with the art & handmade paper & envelopes I would send. Clothing that got put in another room, for me to go through soon & keep or give away. 95% will be given away, as they don't fit since this body is no longer mine & has very strict rules on what it can or will wear. Mom & dad's things stored in 'my' closet. After trying to help as much as I could while watching my dad fall, cut his face, sweat, vacuum, & sneeze while mom was having heart attacks downstairs worrying. After sleeping & rolling over in a thousand times in this loosely based sleep, I've woken now to a furious back, mad as I just got spinal shots & have basically cancelled them out. I did so little work but I could feel myself pushing too far as dad's face dripped with sweat & hopes & good intentions. My brother & family here on vacation are coming back tonight & I don't know if I'll be able to make the trip downstairs to see them. This was Chai bunny's reaction yesterday, framed in hiding.

 

The guilt of being sick

As dad is in my room, vacuuming & preparing for the carpet guys to come measure for carpet to replace what Chai bunny & I ruined, my heart breaks. I feel I shouldn't be allowed even to have pets. We say some people shouldn't have the right to have kids in their care & now I wonder the same about me after Chai bunny passes.

After seeing my brother, his lovely wife, & adorable nephews yesterday, I woke up today so sore my arms feel like they have been run through pasta maker arms that flatten over & over-& I wasn't even able to sit while they ate lunch, pick up my one year nephew & barely could gently hug my older nephew. I realized as we will soon live a few miles away from then they are probably realizing that I will become their burden-one they don't deserve, need, or should have to handle.

 

 

Simply Sunday

As I sit listening to my beloved rain that I love but my evil body hates, I focus on the little good things that have happened in the past few days. Chai bunny remembered how much she loved to get in bed with me for bunny massages, & has been up with me, getting her ears, little face, head & jaw rubbed no less than 15 times at least the past few days. She has a place on her tummy which entails a vet visit tomorrow or Tuesday, but today I'm concentrating on her fuzzy face.

I finished my 4th book this year! It was almost 700 pages & involved me checking it out from our ebook library 4 times, but totally worth it-the first book in the Girl with the Dragon Tattoo series. I just got book 2 from the library. Chai bunny & I shared a strawberry today...her first & she loved it! I got several free ebooks & a few on sale that I can't wait to read-& Amazon held their word-I got my replacement Kindle last week & it is working great! Great tv tonight which is always a good focus off pain point, as well as my books. There are times in my new life when thinking about the good, even if tiny actually does take my focus off pain for a small little while, & that's a massive help.