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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Beautifully Broken

We have loads of flowers in our yard-red, yellow (my late grandmother's favorites), & pink roses, as well as white cabbage roses. Huge bushes of gardenias which smell amazing when the wind blows just the right way, & these purple flowers on an almost tree size bush. Mom discovered that when they wither up they become heavy & break off, & the ground below is littered with the fallen flowers. They are very pretty, but the ones that fall off become a darker shade & are a much more beautiful, very different looking flower. The live ones remind me of the normals-people who don't have the chronic invisible illnesses. They give to the world. They add something. The wind picks them up & their scents fill the air. Many people I've talked to feel guilt over not being members of society who work, do good for their communities & add positive aspects to the world. Every Monday especially I feel such guilt that I'm home in bed when most people are out contributing to society. Having been a teacher I really feel as though I let my former students down. I'm the burdened withered up broken flower who now litters the grass. Though I much prefer the darker, richer shade of purple I've turned into, trying to get through the guilt is so heavy that my petals pull inward inside the center, become very heavy, & prematurely fall to the ground. I know my guilt is unfounded, yet it's still there, on the back burner of my conscience.

The flowers open full-we aren't sure what kind these are.

Dried up fallen ones that mom brought over last night.

The gorgeous colors of the dying, withered blooms.

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A bit like House, MD

Anyone with chronic pain comes to realize in time that the never ending stabs of constant hurting can & does come out as anger. I loved House, the TV show-though I'm not the crazy puzzle loving jerk I have my moments. Every single time I see my cane I get sad yet angry simultaneously & want to paint racing stripes on it-my sarcasm runs deep. We never mean to lash out, yet we do. Most of us immediately regret it & hate ourselves for letting our pain spill out onto someone else's life. Recently I publicly said some things I regret-as they were spoken out of sadness for the past & friends I used to be able to count on...& took it out on someone who wasn't in that category. My lost past is probably the biggest source of emotional pain I've got. Anyway, I talked to the innocent person & apologized, but I hate that I let my pain hurt him. While I find venting in the right forum helpful, I must remember to spare the innocent ones.

My great uncle's cane matches my Indonesian triangle piece so well...maybe racing stripes aren't the right way to go ;)

 

Caned sadness

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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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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.

 

 

A day in pics

Sometimes I just don't have much to say-anything of value to offer. One great piece of news: after fighting with/explaining/jumping through the hoops over & over, my student loans & the company that has them after a 3 year battle finally accepted my disability federal judge claim & forgave the debt. I hate not paying back what I owe, but there's no way since I can't work. We're thrilled but I feel guilty at the same time. Today 3 years ago my first house rabbit, Amsterdam, died, & Chai bunny came bounding into my life a few months later. Here she is playing in the spare room...& not chewing the cord. ; )

 

 

Housebound holidays

So often being a sick housebound person feels really tough when everyone is at the beach, at a cookout, or at a holiday party. Granted the holiday is about the men & women who serve with honor & bravery to keep us safe-& yet we all take advantage of the awesome sales & South Park marathons. Obviously we can balance both-but being stuck at home feels like any other day. I decided to treat myself a bit, & got 7 Nordic crime ebooks discounted hugely today. I let myself relax more & enjoy marathons, & try not to feel guilty that I'm not able to work or do the things most normal people do. I also really let the thought sink in that I could be a sick person stuck in another country where I have no rights-access to medical care or help. The thought of living my life without the huge advantages I have could be a much worse life.

 

Yawwwwn

Ever since the spinal tap I've been exhausted. Way, way, way more than the normal me exhausted. I got shots in my pinched nerve & sciatic nerve Monday. I've been sleeping at least 19 hours a day since. Amazing how your body reacts to various things & I guess how my body is trying to protect me from myself. I slept all night on & off the recommended heating pad (usually it's ice down my pants but dr. T said heat this time around) & didn't take my last pain dose as I fell asleep. Waking up moments ago, all my mistakes arrive knocking at my door. Pill? Taken. Sat up & hunched over & stretching? Doing. Cold club soda out of the 2 liter? Gurgling & making that fun bubbly sound. Chai bunny is at my feet happily munching on a treat & very happy I'm awake. I sat up in bed gingerly yesterday & ended up indeed protecting the new shot sites yet forgot & twisted or wratched the spinal tap site. My face & lips are swollen from meds & the steroids in the shots, & my hair looks like really bad uncute bed hair. When I feel guilty that I can't work, help people, you know, be a productive human being, I try to remember days like this.

 

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.