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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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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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.

 

 

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.

 

Grieving the soon to be lost

Think about someone or something you use & love & depend on. For some a trusted hairdresser. I know people who have had longer relationships with the people who cut their hair than marriages. For some a beloved store-records, organic food, bookstore, etc. Maybe a great boss-a co-worker who goes above & beyond-an assistant. Your favorite waitress or coffee shop server-they give you a little extra topping or French fries. A company you work closely with maybe-you feel your business couldn't last without them. Now imagine losing them. They move, retire, get a new job...for whatever reason they're gone-or you are. For me, preparing to lose my doctors here feels like a death. Yes I know I might get better doctors, help, etc. I don't care. For 5 years my health & life have been in the hands of people who really cared on a deeper level than just a dr. They went the extra mile-trusted my opinions-listened to my ideas & loved that I really knew & listened to my own body & respected that. As I'm to call a pain center in Little Rock & try to see if they will take my bizarre puzzled case on tomorrow, I grieve. I can't imagine starting over. Again. From scratch. The 5 year 5 inch medical file relationship is almost over. It's like saying 'there's other fish in the sea'...yes maybe, but wow, that magically doesn't stop the pain. For me this is like a marriage ending. A part of me dying. Getting back on the dreaded merry-go-round doctor hunt. Is it worth it? Right now, deep in my heart all I feel is a resounding no.

 

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. ; )

 

 

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.

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

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 17- pent-up feelings will explode in 3-2-1 #HAWMC

One of the biggest mistakes that I learned the hard way was mentally (& emotionally) secluding myself the 1st year I became housebound. I had to move in with my parents in my mid-30s. They became my caregivers by default, & as I write this I've just woken up with a massive panic attack...which is a perfect example of why sharing helps. My parents couldn't understand all the feelings I was having. Grief, loss, humility, independence, etc were just a few. They took the look on my face as anger & I would be shocked when they would frequently ask 'why are you so mad?' when I was in fact, at that moment, very depressed-not at all angry. My face came across one way & without my knowing gave away the wrong emotion. I didn't talk to anyone-didn't reach out through technology like I do now. Fights would start & misunderstandings took over. I would implode yet the bottle seemed to break outwards.

I joined Flickr & finally started documenting me-my fight with fibromyalgia & what physical & emotional tools it was taking. It became my saving grace...to open myself up to the rawest degrees. I started joining groups through various social media & found a voice, & last year really started blogging daily. It has made a huge difference in simply getting feelings out & rarely having to say a word-my face did the talking yet this time people saw what I was really feeling. The picture below is photo manipulated to show how my outsides don't match the invisible pain inside.

 

 

Day 16 writing style #HAWMC #WEGO

For me, something, a picture or event just goes from brain to blogsy. I'll be watching a movie & have to stop & write my blog...example: after 'fight' tonight with family about moving

Today I realized that from now until we move there will never be a day when I'm not asked to go through boxes, asked about items-should I, can I, may I keep things? Things I love. Things that bring back memories. Happy memories, sad memories, bittersweet memories. Each item has a story, & each story carries grief, laughter, love, & letting go. Mom & dad see my reaction to this as anger-when it's the opposite. Each item I see Zoe, from the first day I got her until the day the vet put her to sleep. I see my overseas life-when I did something that mattered. I helped people...there was a need for me in this world, & there really isn't that need now. I see old friends-some I hold so close to my heart even though I've lost them in one way or another. I see Kris-my late brother. I see my old future potential. I see my test results that admitted me into graduate school. I see gifts from my university students. As much as I hate to say it pain overwhelms any feeling of joy at looking at these precious items. Mom & dad think my resistance to change boils down to drs & morphine, when it's grief over losing professionals who see me as a person who is legitimately hurting & in pain. Mom feels she is the whipping post, dad feels like the joy he used to feel can never be found again, & I feel like an anchor weighing them down from sailing into their sunset years together.

 

 

Keep calm...WEGO/HAKMC Day 9

For day 9's task, we were to create through the keep calm & carry on maker online, but to use our message, illnesses, etc to personalize. As the lymphedema (severe swelling in one leg) is getting much worse, it is very hard to just walk. A few hours ago the parents called me down to the garage to go through a few boxes. I was hurt & surprised as they knew how going up & down the stairs is a ton more difficult with the left leg elephant limb...it was tough. To see an ex-boyfriend's postcard, bits & pieces from my teaching, overseas souvenirs, marriage things, you get the drift.

Of course I made piles of to save/donate/throw out, & feeling like an emotional rake was gouging through me I took a few pieces (that I'll through away) but not before I, as always, document some of the things, & explain their relevance. In keeping with my quest to document by photography this savage disease, I made this 'keep calm' alteration.

 

Submerged

For a chronically sick person, we all know that whether it's physical or emotional, etc there is the overall picture. Pretty parts, confusing parts, abstract bits, things you somewhat understand & some that are baffling, but if you look at the close up, there is so much submerged below the surface. Much darker, supportive, hidden parts. My hidden things are so humiliating. So embarrassing. They make me feel like I'm 7 yet 87 at the same time, yet I'm no Benjamin Button. As open as I am there are a few things I keep deep, deep down for fear of the reveal of some things that happen often & feel so crushing.

 

 

Sides of sides

I just watched Bridesmaids, & had no idea it was as serious as it was funny. I often feel like the main character-left behind while everyone else is married with 7 kids & perfect jobs, etc. Of course that isn't the case-& everyone sees & takes information & life differently. We all interpret the same thing so vastly unique, & as lonely & out on a limb as I feel I know there are those who feel the same though to me they seem to have everything together. This is a painting I did, & put through different techniques just a few tweaks off you get interpretations that are miles apart. I have no answers or solutions to which one is the way my life should o, & I'm not going to pretend that it is easy in any way, shape, or form. I do know that I like each picture for their own merits, pros & cons.

 

 

 

The fear

Many of us live with fears. I grew up with fear twisting around my every muscle, thought, & mind as my brother going through cancer treatments, & later dying left me thinking fear was normal. I used to throw up nightly as my fears took over & my stomach felt it had to release this fear. I got better as I got older, but after getting sick, the thought of getting fired (they ended up letting me resign) or losing friends (count is at 3 significant friends) & losing myself in these illnesses caught right back up with me. I have horrific stress dreams, where I'm usually trying to find something that I never can find/finding my pets starving to death/being back at unusually cruel workplaces/& my family abandoning me. I wake up with this on my mind 29 out of 31 days on average a month. My fears now are moving, leaving my doctors, having to tell my doctors, not finding a good replacement (though I promised that there are no takers & we are supposed to move in 3-4 months), etc.

 

Chai bunny saves my night

I'm home alone for a few days, & after getting a call that left me in tears, I went to get my beloved bunny. I have been staying downstairs as Macy, the parents' cat, gets very upset & cries nonstop when they're gone. So Chai bunny making her excited going downstairs breathing noises was so cute-so nervous as she hasn't been back on my parents bed in forever. She was so shy at first, all huddled into me, cooing & softly making the sweetest, most tender crying-like noises as we cuddled. She got brave of course & hopped around the bed...in my room she's up & down on the bed constantly, but she was in newish territory. I got a few hilarious pics, one which got retweeted as cutest pic of the day on twitter (us watching Alcatraz together) & an under the chin shot where she looks like a shark-dolphin. She cheered me up, & I can't wait to bring her down later today. As anyone with a chronic illness knows, having the all consuming love of a pet is indeed the best medicine.

 

 

 

 

 

Feeling fully

Feeling so many emotions at once, I can't even express properly, so I'll let the pic speak for itself.

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

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.

 

 

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.