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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Making the bed

I've been really sick lately. My body seems to have forgotten what proper seasons feel like, & for over a week my sinus/allergies/cold has switched into high gear. Crazy how my body forgets how to fight & adjust to something I lived with over half of my life...after living 5+ years without seasons, my compromised body doesn't know what on earth to do. All I know is that if I don't see real snow after the packing, moving, stress, etc I will flip out. Dad found a bottom/fitted sheet & brought it over. He is really busy today, so I made myself switch around the mattress pad, put on a bottom sheet, & rearrange the batik bedspread so he didn't have to come back over. I have been so happy to just have a bed, tv, fridge, & Chai bunny I've lived without a sheet for a couple of months. Your priorities change when you focus on just getting through each day & night as best you can. Chai bunny loves the new & improved bed, jumping up & thumping so hard she bounced to announce to the bed that she had arrived. Of course my body is cursing me for not waiting for bed-making help, but as the parents are sick with cold front colds too, I just wanted to do something for myself. Mom sent me these roses from one of our many flower bushes last week, & today as they are dying I fell in love with the poppy-like look of the huge middles & had to take a picture. An almost dried Cabbage Rose, watching My Name Is Earl on Netflix, & Chai bunny visits set my mind at ease a bit as I try to breathe deep & fight through one more day. & fresh sheets are just the icing on my happy little cake ;)

 

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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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Sleeping lessons

After finally moving into my motorcycle workshop turned my purple apartment, I've been sleeping with less pain. Being back in my orthopedic mattress sleigh bed is a huge part, along with a few adjustments. My house is small, but a separate house & perfect for me. I made my bed a focus as I spend most of my time in it-it kills my back to sit in chairs/sofas/etc, so sitting in bed is my answer. I stacked 4 pillows behind me against the headboard & 2-3 pillows under my knees, creating a recliner type effect. It really seems to alleviate a bit of pain while sleeping.

 

 

Dad & I put together the Tetris like impossible shelf so my records have a great place to live! After we got a toilet & sink put in mom & dad donated 2 large bookshelves to create a privacy barrier around them, & I found my old James Bond poster-& I'm thinking of hanging it up so if anyone ever broke in they'd see a life size picture of a man...the man guarding my home. I can't think of a better bodyguard. ;)

 

Of course the shelves & walls will be filled with all my art, overseas treasures, etc but we are unpacking & setting up 2 households so it will get done in time. We are getting a WiFi extender as I am barely getting a signal out here & am having Internet & Netflix & Facebook withdrawals-so hopefully that will solve that problem. I can't live without my Netflix!

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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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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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2 days & Zoe

It's 2 days until we drive away from this house. It never felt like home except for my parents being here, but nowhere else did either. The Czech Republic felt more like home than here-I at least met people & made fantastic friends, went out, etc.

 

Zoe cat died Feb. 1st, 2011 & I still haven't been in the backyard to see her. With the emotional state I'm in, how on earth-this solar system will I say goodbye?

 

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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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Dream stress pic

Just a pic of an image of a dream I had. Not a ghost but a look at a mistake maybe? Titled The Brown Veiled Wisp

 

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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.

 

 

Swollen, dirty tears

After my neuro appointment, eyes so swollen & tears so spent

 

 

Unseen forces

Facing & fighting the unseen forces. Moving, spinal shots Thursday, mixed faxes & doctor/clinics fiascos, etc

 

Tangled up layers of a person

It is hard to know when I see myself which parts have been there all along, which are just coming out, & which are just the way my persona & body & soul are coping. I wrote this earlier tonight, as the house was getting ready to be shown to sell. Me behind the filth, the perceived anger, the not included in decision making then when I get 'angry' what you see. Me behind the 'how can you live like this?' me behind the purposeful lives of my siblings & their families. Me behind the failure. The pain. The searching. The lost. The forgone conclusion.

 

Migraine dazes

I don't have migraine headaches often, but when I do they take me under. After taking Chai bunny to the vet Wednesday, I took a nap & woke up feeling as if my neck was in a vice & there was a softball between my eyes, pulsating & waiting to explode. It is still here but has moved to the right temple. All I can do is try to sit or recline while supporting my neck until this passes. I will fill you in later about Chai bunny's magical adventure ;)

 

 

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.

Let it out

Today was an incredibly rough. Not just the usual pain & angst, but in trying to get my doctor here to send records to some unknown pain clinic 3 states away & failing, I realized there are a ton of pain doctors/clinics/but some do the meds but not the spinal shots, some do the shots but no meds...you get the point. I became incredibly frustrated. I can only see Internet info which is often very one sided. I realize as my friend described it I'm back on that house of cards. Before I even really started building the cards ripped, & my panicked mind along with it. I had to just give in to the panic attack, lay my head down & get in a fetal position modified to my screwed up body, & just let it out. For now.

 

 

Time's humor

I was taking a pic recently & ended up capturing the wrong edge of the intended picture. Doesn't matter what or why, but I found the accident photo compelling. My eye in the pic is looking up, looking to see if I'm holding the cell camera right...which I wasn't, but my eye looks normal. Not so sad. Not filled with tears & dread-I was so focused I was too busy to look like my soul felt. I was playing with my hair. Let me explain-I found a subject a day chart on the net & thought I'd try it-& that day's was descent...however you wanted to cover or interpret it. My hair has changed so much since I got sick & I was thinking about the descent of my hair from well to sick, though my hair itself is really healthy. I don't style it, blow dry it, put any product in it-so it is totally boring & natural. Anyway, thinking about the last time I had it cut professionally-I can't remember.myears. A decade maybe. In a few hours I'll leap out for the first time in years to call a pain clinic. Evidently we are moving this summer, & I need to call them to see if they can take me, what I need to do to start the ball rolling-all the stuff that terrifies the one's who feel a good doctor is far more important than most anything else in life. I'm so scared-what if they aren't accepting new patients, or what if they are not a good fit? I've even had dreams of calling them with disastrous results. For me the unknown used to be so exciting. Move to a new country in 6 weeks without knowing anyone or speaking their language? Can I come now? Start grad school in my 30's with no money? Sign me up! Snorkel the great Barrier Reef even though I'm scared of fish & sharks? I only live once! I was pretty brave. Really fearless. Now making a phone call that signals me leaving my beloved doctors is much scarier than getting on a plane to commit to a country I can't pronounce most of their words. & away I go.

 

Leaning into nothing

Sometimes what I think is a solid thing to lean onto-something that will hold me up-I see it's actually dark & missing. I'm leaning onto the abyss.

Earlier tonight mom noticed-again-that as my permanent sitting position is Indian style-it leaves red patches on my legs where my legs are smushed together. It worries her. I get that, yet I cannot sit with my legs extended without sharp pain in my lower back. Anyone with back problems-imagine when it is worse-after standing a long time or after doing certain household chores-imagine that searing pain whenever you stick your legs out. Even a tiny bit-that's what I feel in my back unless I'm sitting on a bed with my legs crossed Indian style. I would love to be able to casually fling down on a couch, my legs propped up in front of me on a table, or curl up in a comfy chair with my legs dangling over the side while reading a book...but I can't. That's one reason doctor visits are awful-sitting in the waiting room physically hurts. It sounds so ridiculous but totally true. It depresses me so much that this fact gets questioned & exists. I feel I'm in such a dark hole & surfacing is so far away.