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

 

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.

 

 

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.

 

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.

 

Missing House

Yesterday I went to the neuro. After running the tests 3 times & my proteins being slightly elevated I have for now (again) been ruled out MS-wise. Of course we were thrilled, & after the dr gave me 2 shots in the sciatic nerve & pinched nerve. I was really hurting-I hadn't realized that for me/a fibro person, the spinal tap took a lot more out of me than I thought. Our cable went out, & sadly I missed the series finale of House. Look, I know his character was an ass, yet I grew to love him. Better or worse parts of how he acts reflects me sometimes. I guess having the world see how chronic pain can change you helps me cope somehow. I love & will miss how he, as well as my real doctors see me as a pattern & puzzle for good-not something to chuck out & refer endlessly to other drs to get me out of their offices. Being dismissed because you are too complicated is a special kind of rejection hell. This pic & poem (instant poetry gives you 35+ words & you make something with it) was taken tonight, after I slept about 19 hours. Enjoy & excuse the crazy. :)

 

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. :)

 

 

 

 

Day 28-the 1st time I...#HAWMC/WEGO

The first time I took a picture & realized it could be my very own form of art was when I first started living overseas. I would spot things that weren't necessarily the focus most people would take, but what little details I noticed & loved. It was how I liked to travel-off the beaten track & off getting lost & finding wonderland. I remember being on a trip on the island of Bali, Indonesia, & we went to some places most tourists don't go. We stopped to watch women threshing wheat, & I took pics of them, but also I got down into the wheat field & took pics from the perspective of the stalks. Those pics are in boxes now, waiting until we move & I can finally display them as I used to in my own place. I had been missing art. I had broken almost every bone in my right arm, & it had really messed up my ability to draw, paint, etc. When I saw that I could make art by the angles I chose through my lens, I found my art outlet again. It was just thrilling. I to better & fell more in love with discovering things I otherwise would miss. After becoming housebound once again I felt lost & without an outlet until I turned the camera on me. I love photography. For me it is the outlet I needed at a time I felt so lost & frustrated without an outlet of creativity. The pic below is from last Christmas. We were RA my neurologist office, & I had just gotten spinal shots. While waiting for dad to bring the car around, I scrunched over on a small ottoman type thing beside the tree & saw a gorgeous gold ornament that had fallen off in the back, but from my scrunched view it was reflecting the lights from above, & I instantly grabbed my camera & shot a few pics until dad pulled up. It's my favorite Christmas picture, as I would have never noticed it if I hadn't been doubled over in pain. That's the day I thought up my tagline, 'pain worth a pic'.

 

Day 25-memory from another view-#HAWMC/WEGO health

The girl sits on the bed-naked-as any clothing that touches her skin feels like an attack of needles. She has an ice pack propped up on a pillow placed carefully so it covers two inflamed areas on her lower back of the spinal shots from earlier that day. Her left sciatic nerve starting in her back & radiating down the back of her leg & the top & bottom of her foot feels as though an electric prod combined with a vice is irritating the nerve constantly. It never lets up. Her left hip is so tender to the touch she hasn't slept on it-hasn't even leaned over on it-for the past 7 years. She tries to watch tv to take her focus off of the pain yet can't focus. She switches to Netflix on her iPad, trying in vain to find anything that can help focus her damaged brain's pain center elsewhere. After starting & stopping at least 3 different movies she finally settles on one. Tears start falling onto the screen. Beside her the bed softly indents as her house rabbit, Chai, as carefully as she can jumps up on the bed. Chai starts licking the sheets which in bunny means 'deep affection'. She puts her front paws up on the girl's left shoulder & touches noses with her. She barely licks her arm, but as it feels like acid she stops & hops around in front & licks the bedspread, pillows, & any clothing on the bed. As she examines the girl one last time she gives final licks & slowly jumps off the bed, flops down next to one of her stuffed rabbit friends as the girl smiles.

 

Did I tell you? Do you know?

I gasp as I have my mouth covered. Covered from my parents hearing me-as I hold my gasp in the palm of my hands, I suck in for air to be met with salty, wet palmed skin meeting my mouth. Dad has gotten me beer as my spinal shots, morphine lacking relief has failed. A last ditched begged effort for pity & relief. Did they hear me? Did I stifle enough? I try so hard as beer is as expensive as medicine that has yet to find me a hiding place.

 

He has bought me full-on Budweiser. The Czech original, corrupted by greedy Americans. I listen to William Fitzsimmons, & the loved Julia Stone on his gorgeous album. On my iPad, I can see it as orbiting planets & moons as far from the original album as I am with relief on the app 'planetery'. I watch as my songs orbit moons. Did I ever tell you how I love space? Did I ever tell you the 'Budvar/Busweiser' story? How many key things did I forget to tell you, as I thought we had all the time in the world? Will you hear this song & know why it makes me cry? I hope I did, or that you find it in my SOS emails. You're so smart-& knew me so well...but did I know it all myself at the time? Will you figure it out? As you travel our world, will you figure it out from my missing pieces?

 

I hope you think of me as I was, as the current has too many tears to stifle. So many tears yet to find.

 

 

Chai bunny, my smile maker

After the worst spinal shots for at least a year, Chai bunny didn't get her playtime in the spare room the past day or 2-but she's so perceptive as she senses when I'm really bad, & doesn't stand up & scratch on the door as a signal. Tonight I let her out, slowly followed as she dashed down the hallway, jumping up in a 'Binky' along the way, & by the time I caught up in crashed on a bed she had pulled out the moss from the fake ficus tree. Such a sneaky cutie face. Here is me catching her, & her 'I'm so sweet you can't get upset long' face. Works every single time.

 

 

No pain shot makes Marnie a sore girl

My neuro clinic was out of pain shots but full of spinal shots for my sciatic nerve roots. This is the result.

 

Heating pads & terrored thoughts

After my 4 filling go around a couple of days ago, my back jaw tooth is starting to lessen pain wise, but the jaw & neck strain of one with TMJ has hit hard tonight. I've been laying on my angry back so I can have my head propped up with that strangely uncalming blue heating pad behind my neck, offcentered to the left with my face trying it's best to keep my unhelpful left jaw somewhere near the heat. The featured pic is reversed, as I have no good light source at present on that side, but hopefully you get the point.

 

My heart ached as I just finished a funny, grieving, poignant mystery wrapped in an unlikely love story from a British TV series on Netflix. Thinking of moving on-& the evidently us moving to Arkansas hits my heart with a panicked bolt of terror. Yes there are pain clinics...but have doctors moved there since I left who can do the spinal shots? My first Little Rock doctor did shots but at the source of the pain-not the root where the pain originated. Yes, I'm told pain killers like I take here are probably possible, but that alone isn't enough. And probably? Probably? I silently start weeping, quietly as Chai bunny has been so concerned & up on my bed no less than 7 times in the past few days-tears running down my half-hot face as I ponder 'probably'. Sitting in my primary care doctor's office Wednesday, I felt like I was holding out as I could tell she knew I was holding out, as I can't figure out how to say the words 'we are probably moving. In a few months'. Dad made the 6 month blood tests & follow-up as I waited in the car, not being able to stand lying in her office anymore. I asked him why we even made an appointment that we know we probably won't be keeping. It came out harsh when it meant to come out terrorized, but my brain is so lost it doesn't know how to communicate anymore. I just wish I could have a heating pad wrapped inside my head, go into a coma-like state & not come out until there were no more probablys, & only things have been made markedly better with your 3+ medical specialists.

 

The cleaning fiasco

Went to get my teeth cleaned today. Huge phobia of dentists, & hadn't had my teeth cleaned in a long while. Those of you professional spoonie sick people get how seeing 3-5 doctors regularly doesn't leave much time for dentists, & disability doesn't cover dentists. Lovely. Anyway, after getting 2 out of my 4 needed fillings & learning that laughing gas really helps keep my back ok during the process, I agreed to get the cleaning as they promised having laughing gas to get me through it was fine. They were fitting me in, so dad & I waited for about 30 minutes, in chairs that hurt so much, which feels ridiculous saying, much less typing & publishing for the world to see. I kept thinking, 'well, you'll be under the gas soon' to keep me from leaving. So they call me back & we soon hear that oh no! The one room in the joint that doesn't have gas in it is her room. She suggests we just do full mouth X-rays. Against my better judgement I agree. Dad had to run an errand & left. She not only does X-rays but for some unknown reason does every single tiny bit of every tooth with that evil 2-sided hook torture tool, while I'm bleeding everywhere & she is scolding me for not coming in sooner as my insurance, bought from them runs out in a few weeks. She calls dad back & tells him how bad my gums are & that I need serious gum therapy. This is now an hour and a half later. She brings my dentist in as he has to check me before I leave. He comes in & all four of us are in the room, & tears start just pouring down my face...though I'm completely silent. She didn't mean to but blamed the medications, stress, etc for why my gums are so bad. & heredity of course. We finally leave, & I weep openly for about an hour after. I now have a back that is screaming in pain, & it feels like muscles are being fed through a meat grinder while still attached to my bones, ligaments, & spine. Chai bunny got in bed with me & tore apart the goodie bag with the free floss, toothbrush & paste, as if she sensed hat new foreign bag was the source of my crying. So Monday I have part 2 of a promised gas filled cleaning, & Tuesday my 2 other fillings get filled. Then the next week neurologist to give spinal hots to try & undo the damage done today.

 

 

 

Bruises without boundaries

As a girl who has to take loads of medications, vitamins, herbs, etc, I tend to bruise easier than the Georgiaiest peach. After the 2nd big fall a few weeks ago, my dentist has me taking even more generic Advil for inflammation in my gums & right side of my jaw, which is still preventing me from biting down properly. After getting spinal shots on Valentines day, I also got the usual pain shot which helps the hour drive back home less painful. I woke up to find this bruise wrapped from my right hip/bum area all he way around my hip & stomach...roughly the size of my iPad. Lovely, no?

 

 

 

 

Happy spiney valentines!

 This is a couple of days late...but wanted to share my valentines day. The night before my parents surprised me with a little, adorable, perfectly tiny Kindle as a combined early March birthday, Easter, & any other spring holiday you can think of-it's perfect for me, & I took it with me to my neuro appt on V-Day. I absolutely love it, & have already started a ton of new free books. ;)

It even let's me underline & write notes to my heart's content!

 

F is for firing flare-fall

 So a couple of nights ago I fell again, but for the 2nd time in just a few months it was what I fondly call a tree fall. I get dizzy, start to fall, & instead of my arms or hands coming up to assist me, they flake out. I just fall like a cut tree without my reflexes or time to yell timber. After going to the ER & being given the all clear, I headed to my neurologist for my monthly appt. the timing couldn't have been better. I had landed on a very thin rug that covered hard, cement tile & hit on my nose, then barely skidded on my face, landing on the right side. I landed the exact same the 1st time (if nothing else my scoliosis is telling) except I landed on Chai bunny's hay pile. Same whiplash, but minus the road rash on my face. The nurses at my neuro office took one look at me & after dad told them I had been nauseous even with meds from the ER took me back after only one song on my iPod to give me the usual pain shot I normally get after. It contains a medicine that fights nausea, so of course that helped. I got straight in almost to the x-ray table, & my lovely dr was shocked at the looks of me. He explained that sometimes when I go into a flare, I fall like that-& that it is like lighting a match to a more ordinary flare & it just exploding. After the 1st time I tree fell we I'd the whole series of MRIs to again rule out MS. He gave me a shot right in the neck (ouch) & one in my lower spine. My face still looks clownishly awful & my teeth & bridge seem off, but everything is so swollen it's hardly surprising. Needless to say I'll put the dentist off for as long as possible. 

 

With us moving I'm more fearful than ever about finding a dr who will not only treat the pain, but have the knowledge & my trust to let them inject my spine with needles. (as well as talking about me living alone again...cos I was on the floor, blood everywhere & bled for a good 3-5 hours solid & on & off through the day...)