Haiku Heights – MUSIC (with a little humor)

My Name Is Barbra

Image via Wikipedia

These Brood X Cicadas were mating on a road du...

Sweat dripping down me

Cicadas in the summer

Lull me back to sleep

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My voice is off-key

Yet I feel like I’m Barbra

When I am alone

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Listening to sounds

Looking for the Sunshine

Much cheaper than therapy

Brightens, like the sun

Ringing in 2012

Really Not A HOLIDAY For Me

sleep

When the clock strikes midnight tonight, I hope to be sleeping, it’s not a joyous holiday for me. At 10:15pm I will be staring at the clock and remember in full detail, nine years ago when I received the call from my mom that my father had just passed away in the hospital. I was sitting on our bed, my legs crossed and I was crying, sobbing so hard I could barely breathe. My children were little then, my son was ten and he burst into tears just looking at my face and he screamed “no, no, no” and rushed into my arms for a hug. My daughter was even younger, she was eight and I’m not sure she understood what was really happening or if she did, she couldn’t handle her emotions. To this day, she keeps her emotions tucked inside of her like a well ironed handkerchief.

My husband gathered me in his arms and just let me sob. Years ago, my son told me that he thought I would sob like that forever. That’s what it felt like to him, it must have been very scary, for that I am so sorry.

I don’t think I slept that night or for many nights thereafter. If I did finally fall asleep it would be for two hours at a time and I would wake up with a start and that horrible feeling that something was terribly, terribly wrong. Then, I would remember and start crying again.

We generally go out for an early dinner on New Year’s Eve, my husband and I. Tonight we are going to my favorite restaurant “The Flying Pig” (see post) that is also closing it’s doors, forever, tonight. My son will join us for dinner and leave and my daughter will  be working there tonight. It all seems like an appropriate ending to the night, when my father died, nine years ago.

If I can’t sleep at midnight, I hope to be lying next to my husband, with his arms around me until I get tired enough that I will eventually fall into an exhausted sleep. Tomorrow will not be better either, my parents’ wedding anniversary is January 1st. I think, we will all cry together, alone, wishing for the day to pass quickly even as the moments drag for what seems like hours.

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Haiku Heights – Lullabye

Baby

Something must  stop me

From worrying and crying

Darkness, a sad song

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Many years ago

I would sing to my children

To soothe them at night

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Soft lush tones whispered

Sometimes we are all children

Happy for a lie

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My mom sang to me

In a soft foreign language

My eyes fluttered shut

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Move Over ESL, Cranky Is My New Language

A housecat named Princess who highly disliked ...

Image via Wikipedia

It was one of THOSE days. You know the kind, when nothing goes right, annoying things happen and no matter what you try, it doesn’t help.  Made a decision, did you? Guess what, it was the wrong one. It was the day of Cranky. I spoke Cranky, I lived and ate and breathed Cranky. If I had a cat, her name would be Cranky.  I felt irritable with life’s problematic surprises and unexpected twists and I felt very out of control.

My children doused the only piece of furniture that I love, my green couch, with water guns. No, my children are not 4 and 6 years old, they are 16 and 18.  Need I say more? The couch, that I picked out, and the multi-colored  square rug beneath it have always made me happy. Why? Because it was the first thing that I bought with great strength of style and character; I was so sure about it and didn’t waver; to me, it was my own tiny corner of the Museum of Modern Art, at home.

Later that day we drove to a restaurant to celebrate my husband’s birthday. He got lost again and again. Nor did he have the directions with him, he didn’t NEED that, we had been there twice before, silly me!! When I suggested the GPS, he scoffed. He also made an illegal red turn with the (driving) teenagers in the back seat of the car. I was fuming. Dude, what the HELL were you thinking? You’re supposed to be the role model here. At that moment, fuming and cranky became first cousins.

Once seated in the restaurant our daughter, a vegetarian, asked for the chef’s special vegetable plate and we all knew she wouldn’t touch it. She played with her food and moved vegetables around that included: cooked kale and spinach, and fennel and she ate about two bites for 21 dollars. Before she ordered we suggested she order A SALAD  or pasta but she refused. She knew better and at practically 17 anything we suggest is useless. I even said she might want to tell the waitress the vegetables that she DID like but apparently my idea was stupid. Of course it was.

My husband and son shared a steak the size of a lobster pot, it was so large and bloody, it was hard to even take a glance at it.  I decided to have three appetizers: a buttery bibb lettuce salad with a light yogurt dressing  which was lovely, an appetizer of braised ribs ravioli, sweet and soft, the texture of the braised meat contrasting the delicate ravioli casing.  The red velvet cake I chose for dessert was extremely disappointing and tasteless. For those of you who know me, a dessert I don’t like is equal to a symphony of crankiness.

The heel of my left foot throbbed horribly with pain when I walked, the jabbing pain even woke me up in the middle of the night. Not being able to walk comfortably is crankiness personified. I have iced it, wrapped it, rubbed it and have tried at least ten different shoe and old, peeling orthotic combinations, nothing helps.  I’ve had this before and once it starts it takes a long, long time to go away. It’s a stubborn, stupid, painful, cranky, old ailment for cranky, old, me. It’s not enough that I don’t have energy? Now, I can’t even walk comfortably.

I’m tired as hell and just want to lie on the bed, since every bone and joint in my body is not just aching with pain but screaming with it. There are no medications to heal it, or relieve it, it’s something I have to live with every single day and night of my life. I am trying to stay awake and of course I fall asleep, the lights on, the computer on my stomach. I wake up two hours later, annoyed with myself.

The day and night have not gone well and I was glad it was almost over. I couldn’t sleep after my unexpected two hour nap so my night and day hours were confused. I glanced over at my dog who was sleeping happily at the foot of my bed and I watched her breathe and smile in her sleep.  I look at her with love and feel love. My dog is the anti-cranky.

please, let me fall back asleep

Insomnia...

i fall asleep so easily it’s like i have an instant iv drip attached to my hand, it’s a relief for my aching bones and over-active mind. i snuggle into my favorite position, two pillows beneath my head; my brown hair pulled back in a ponytail with a thin black elastic band. i’m wearing only a soft, red, popeye cotton tee shirt. i dream about swimming and floats and old friends and the artist known as prince and friendly unknown neighbors wearing j.crew sweater sets. in my dreams my son is three again, i don’t need freud to figure that one out. he’s college bound and i am feeling nostalgic, oprah is leaving me too.

i wake up automatically at 4am and at the same time every night for the last few weeks. i desperately want to go back to sleep and i try but it’s of no use. i play every game, try every trick and nothing works. i give up and drag my computer to the tiny extra bedroom/office to see if there is someone awake on the other end of the screen. usually no one is. i know it takes time for me to fall asleep, usually between two and two and a half hours and there is not much i can do about it. i have been through this pattern before, i just want it to stop.

i’m so tired but my head and body are still awake and they won’t give up the fight no matter how hard i try. i try not to try and that doesn’t work either. i notice things in the room that i haven’t noticed before, forgotten dusty books, a paperweight with dainty blue flowers. my dog has followed me in the room, she is so used to coming downstairs with me at around ten for a snack that she is confused.  i sit cross-legged on the bed, surrounded by clean laundry, my eyes wandering to my angel statue, my daughter’s first ballerina shoe that i framed, boxes of writing since high school, a mini twa jet i keep in honor of my father. my whole life is in this room and around it.

i want to be back lying in bed beneath my royal blue quilt, and a an old comforter in a cherry covered duvet. i love any pattern of cherries, they make me happy. i want to sleep but i know i can’t, my head is like a ticking clock. my teeth and jaw ache, it’s probably tmj, i think clinically. i remember i never called my friend back yesterday and i don’t like being rude but it will have to wait until tomorrow. sorry, but of all people i know she will understand. she suffers from fibromyalgia and chronic pain issues too. apparently sleep problems are common among us in the tribe.

finally at around 6:30 i start yawning and crawl back in bed keeping my eyes averted from the clock on my bedside table. i have stayed up long enough that i think it will be ok, my eyes close, again. all the colors become white, the fresh air coming from the window is softly soothing. i beg the birds not to come out and sing for just a little while.

Poetry

Northern Cardinal

Image by RunnerJenny via Flickr

Spring

Wind-swept hair falling in my green eyes making them tear up, like sudden heart-break.

The first struggling purple croci reaching for the sun

Cold temperatures still make us shake and  burrow

our necks into pink and red embroidered scarves

while the beautiful red cardinals start singing their delightful songs.

Night

Everything is scary when you wake up at 3:30am.

Twinges tickling your stomach as your mind taunts you.

What was just a thought last night is a devastating situation now.

I try to rock myself to sleep, back and forth, my eyes deadlocked

on the digital clock, numbers flipping past at an enormous speed.

Deep breaths, resolutions, solutions, I think nothing will feel better

until  the morning with its gift of my first cup of strong and milky coffee.

Ordinary Days Are Magical

chocolate covered cherry

Image by circulating via Flickr

I woke up this morning, not to the shrill blaring of my radio alarm clock, or to a shaken shoulder but when my eyes opened and turned to the window.  It’s been a long few days and today I have nothing planned. I did a mental body check of all my ailments: Fibromyalgia aches and pains were present, my right leg still hurt  but was manageable. My knee still throbbed from my recent fall on the icy pavement but my mood was good. I had ten hours of sleep and while the sun was not shining it could have been. There was no snow in the forecast, reason enough to celebrate.

I started driving to the supermarket, because food, comfort and love equals nurturing for me.  I didn’t really need much except an idea of what to cook for tonight’s dinner and a destination. It’s been a long time since I’ve been in the grocery store and new items celebrated my return. Marshmallow yellow chick peeps out the day after Valentine’s Day? Okay. A discounted box of chocolate covered cherries? I love those and I am not proud. Sugar cookies to make for my children and various treats for my dog, Callie’s, upcoming birthday in March. (shh! it’s a surprise party.)

I felt a little guilty because the simple, routine, “mom” things that I was able to do today, I did with less grief. As many of you know, my friend Dawn died on Friday night  and after the wake and the funeral and some time, today I woke up void of a dark, painful shadow. Then I remembered Dawn’s family, her father and mother, her husband, her siblings and her three children not able to escape the haunting grief. I felt guilty for being relieved and it pains me to write this.  I have been in their place before when my father died so I know, I truly KNOW what they are going through and how much it hurts and for how long.  I grieve for my friend, the twinkling green-eyed Dawn, but not the same way her children, her husband and relatives are grieving. Not even close. I feel bad that I have the luxury of distraction.

Strolling through the market I decided what I would be making for dinner, ravioli with a thick marinara sauce that I add a small can of tomato paste to, a store-bought fresh pizza, mozzarella and tomato salad with basil with drizzled olive oil and a multigrain loaf of Italian bread, still warm to the touch from the bakery. It’s rare that my family  eats at the same time these days but I feel happy with them just being home, together for a little while. Next year, with my son in college, it will all be very different.

That is why today, a simple trip to the supermarket and a walk through Target with a Starbucks gift card felt special. I bought a skinny vanilla latte with a shot of espresso to manage my afternoon weariness.  The simple touching of my dog’s fur, and playing with her outside in the snow felt like a gift.  An ordinary day at the supermarket felt, to me, like a five-day vacation to the Bahamas. It’s true that you don’t appreciate normalcy when you have been overwhelmed with an abnormal amount of grief and sorrow or horrible pain from any disease. A simple day that ends with a hot bath, sleepy eyes and a half-smile, is indeed, a miracle.

My Fitness Routine In The Winter

17 February 2007 10:11am

It’s winter time in the Northeast. Actually, it’s been winter time since Thanksgiving and it will probably last through April. We’ve had snow every two days; snow that does NOT have time to melt before the next 18 inches of snow comes piling up on top of it. We have been bombarded with wild, hysterical snowstorms and ridiculous amounts of snow for months.

My exercise during these long winter days and nights are the following: leaving my warm and cozy bed, wrapping myself with a soft, white, bathrobe, slipping on my beige UGG slippers and going downstairs on the carpeted steps to the kitchen. Once downstairs, I exercise my arm by opening the refrigerator, pulling things out, making something to eat: most likely fried eggs and cheese. I then exercise my jaw muscles to eat ambitiously, and drink YooHoo or flavored club soda.When I am finished I put the food items away back in the refrigerator.

I then prepare to go back upstairs, clutching the banister on the staircase, snacks now hidden in my plush pockets and pull myself up the stairs, take off my bathrobe, and climb back into bed. I cover myself with four comforters and then I use my fingers to: turn on the television, watch the Cooking Channel, reach for Raisinettes, check my computer and turn the lamp off so I can take as long of a nap as humanly possible.
Next day: Repeat.

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These Days

January stinks...

Image by Jinx! via Flickr

I have been feeling extremely discouraged and blue; I’m back to square one, for the sixth time, in my search for a successful treatment for both my Fibromyalgia and auto-immune disease, Hashimoto’s Thyroiditis.  It’s been over 4 years since my initial diagnoses and I have been given drug, after drug, after drug.  I start a new medicine, each time, with hope and innocence and excitement like a flirtation with a possible new love. Two months go by and then I find out that it was, again, just a fantasy. Side effects are my enemy, I generally am the person that fits in the “possible and infrequent side effects.” Another dream deflected, another dream deferred. Back to the drawing board, again; I eliminate the medicine and so too my hope.

I’m drowning my sorrow in leftover Halloween candy and cookies:  Almond Joy bars, Kit Kat bars, Nestle Crunch, Heath bars, Reese’s peanut butter cups, Twix bars, Keebler chips deluxe  cookies and pretty rainbow cookies filled with marzipan and jam. For my anxiety attacks that wake me up at 3:00 am and keep me up until 6:00 I occasionally take Xanax, one prescription drug that I trust.

Yesterday, I started Savella for my Fibromyalgia and decided to stop using Arava (an immuno-suppressant drug). True,  Arava kept my energy up but my legs ached continuously,  like someone was squeezing them into a vice and wouldn’t let go. I don’t want to be on as many drugs anymore. I want to simplify my life, my body. It’s always a long stretch between taking the new medication ( 6-8 weeks) to kick in and likewise for the drug to leave my body.  My husband kept mentioning how the Arava gave me energy and he was right but at what cost?  It was only the other day that it occurred to me that I don’t have to live with the side effect of leg pain if I don’t want to. I’ve been on this drug for months and the thought just occurred to me. I have a choice but with that comes the acknowledgment of failure.  Am I so used to pain that I feel it’s acceptable, even normal, to have some?

I’m alone in my search because no one really knows how I feel except me and even I get confused, my symptoms blur together. It’s hard for me to describe pain that is not throbbing, jabbing; how does one explain “constant?” I go by hunches and I try to listen to my inner self. My body is telling me now to get rid of the different chemicals and if I have to, start again, reevaluate in the future. For now, I will try to nurse my defeat with sleep, and when awake, look bravely at the sun in the sky while it lasts. I dread winter; I always dread winter. My bones feel frosty and taut, my body aches with pain and my mood becomes as dark as the early sunset.

*These Days by Jackson Browne

Well I’ve been out walking
I don’t do that much talking these days, these days
These days I seem to think a lot
About the things that I forgot to do
And all the times I had the chance to

And I had a lover
It’s so hard to risk another of these days, these days
Now if I seem to be afraid
To live the life that I have made in song
Well it’s just that I’ve been losing for so long

Well I’ll keep on moving, moving on
Things are bound to be improving these days, one of these days
These days I sit on corner stones
And count the time in quarter tones to ten, my friend
Don’t confront me with my failures, I had not forgotten them

The Fabulous Fibro Spa and Resort

HibernationNow and Phylor’s Blog present: How a spa would be designed and managed by fibrologists:

Dear Guest:

Welcome to the Fabulous Fibromyalgia Spa and Resort! Whether you are staying in the main building or one of our cottages (the Pain Villa, the Fibro Fireplace, the Befuddled Bedroom, or the Nerve Damage Madness), you will find that we are equipped to handle any situation that may arise. While we don’t leave a chocolate on your pillow, you will find 2 Advils or Aleves and specially designed heating pads specifically for those tender 17 points. We know there are days when you don’t move around all that much, so rather than steps or long walkways, you will find escalators similar to those used a airports. Please hold on to the sides as we know that some of you may have balance issues.

You can check in at whatever pace feels comfortable to you. As memory problems can be an issue, you will be given several key cards (room number stickers available upon request) in case you should misplace one or lock yourself out of your rooms. At 4pm and again at 9 pm, our special welcome cocktail, the Fibro Fizz will be delivered to your room.

Each suite or cottage contains a memory foam king-sized bed, a large bathroom with tub and Jacuzzi. We have an array of unscented toiletry items available upon request at check in or with reservation. Beside your bed, you will find a white noise machine with peaceful sounds such as waves lapping the shore, rain-gentling falling, and other soothing sounds from nature. At your writing desk, you will find a supply of post-it notes in different colo(u)rs and patterns, pens, and stationary for making notes. There is high-speed wifi, HD cable, and a list of more than 200 movies on demand at no extra cost. You can search the movie database by genre, stars, director, screen writer. We are always open to suggestions for additions to our list that can be made available within 24 hours. Providing these in-room movies has been a big hit with our guests. If you don’t feel up to going to one of our many social areas, you can relax in the comfort of your own space and refresh your memory by re-watching classics, give your mind, rather than your body,  a workout with the action pictures (yes, some folks do move that fast), and since laughter is great medicine, our list of comedies is extensive.

For an additional $50 a night you can upgrade to one of our luxuriously padded rooms, conveniently located next to one of the dining areas. With walk-in bathtub, Epsom salts on demand, and doubly padded walls and floors, these rooms appeal to the fall and/or trip crowd.

Every hour is medication cocktail hour at the indoor and outdoor pools. Our staff will gladly prepare whatever combination of medicines, vitamins, and supplements suits your personal needs. Some of our more popular concoctions are the Savella Sling with just a hint of Tramadol,  the Lyrica Laser prepared with or without Xanax, the Gabapenten Gobbler, best served with a dash of morphine and the Oxycontin Overboard that contains over 7 medications, and 10 supplements.

Our dining facilities that include a formal dining room, casual café, and coffee bar are open 24/7 for your convenience. Our chefs have created a luscious array of soft foods for people with TMJ. You can choose from menu items, or request the kitchen make something special for you. Room service is also available 24/7. There is no need to get out of bed, the restaurant has a key and tipping will be added at the end

Our spa has all the latest in massage and relaxing techniques including hot stone therapy, therapeutic massage, breathing and relaxing exercises. We are always happy to deal with your bunions, your broken toes, your mangled feet. Included in your package are several free extras we call our Fibro Fix-up: a manicure and pedicure, hair cut, tricks to hide those dark circles from sleepless nights, and the opportunity to consult with one of our Fibro Fashionistas for the latest in lounging and sleeping wear. Our full Fibromassage offers gentle touching of those inflamed areas all over your body. We especially cater to the 17 point system of pain centers. Our staff has won over 25 first place ribbons at the Annual Feeling Fibro Massage and Comfort Olympics.

A recently added feature is our Fibro Fitness team. These well-trained and dedicated Fibro-Fit individuals wheel the exercise equipment to your room, carefully encase you into the fat-melting machine of your choice, and the machine does the rest. For those of you who don’t need to shed a pound or two, we have a special cheesecake and ice cream diet to ensure you get those needed extra calories. You can have these special meals delivered to the privacy of your own room, or you can join others on the thin side of healthy Fibro-Fattening Bistro.

One of our more popular features is the Xanax Room. Open 24/7, you can order the strength of Xanax you need to let those feelings of panic and anxiety just slip away. And the price is right: free Xanax! Adjacent to the Xanax Room, the Ambien Pre-bedRoom prepares you for a cozy, sleep-ful night. There are teas, comforting lavender and other scented oils and candles, and helpful staff members who will accompany you back to your room, and tuck you in for that nice, long sleep you have been looking forward to.

We have a fleet of electric scooters should you feel like a leisurely ride along one of our specially designed walkways that sweep themselves clean, so there is nothing along the route to jar your bones. We pride ourselves on our gardens, including the Zen garden should you feel the need to meditate outdoors, and a complete herbal garden for creating our special teas such as:

Morning Eye Opener, Afternoon Nap, Evening Relaxation, and Bedtime Comforter.

We have hotel hosts and hostesses posted every two feet so that when you lose your way because of Fibro fog and get lost, someone is always there to turn you around and point you in the right direction.

This is only a small sample of the information will find among the pages of your welcome kit. Please feel free to ask questions as many times as you need to while acquainting yourself with our facilities. Our aim is to give you as much pain-free, fibro fog-free time with us as possible. You are free to participate in any of our organized activities such as Bend and Stretch or Sitting in a Chair yoga classes, make use of our arts and craft room, or, simply lay back in the gentle hug of your bed, and let us do all the work for you.

Thank you for visiting the Fabulous Fibro Spa, we hope to see you again soon.

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