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.

 

Day 24- Mascot a go-go #HAWMC-WEGO

Our topic for today is to have a mascot for our illnesses or health focus. I'm choosing my own name...the reverted butterfly. Within a year or so into my becoming housebound & getting involved online, I discovered that many of the groups out there have butterflies as their logos or animal so to speak. I liked the thought, but as I had spent the last decade of my life living & teaching overseas, I felt the opposite. I was lucky enough to have lived in Indonesia, the Czech Republic, & had traveled in Australia, Asia, Brazil, etc. I felt like I had reverted back to the cocoon stage but was fully grown, so when I started my picture a day blog, I chose to refer to myself as a reverted butterfly. The important part I felt was to be honest-to paint a true picture, but also to be positive. I am trying to fight my way out of this new cocoon. Even if I never fully get out I'll never stop fighting, & to me that is my main message. I painted a picture of a purple butterfly, as fibro's color is purple, fighting to escape the cocoon stuck on a tree branch. You can see I have windows into my world from the cocoon, & damaged wings are sticking out, trying to stay a part of the world from this strange new wrapping of life.

 

 

'my dream day' WEGO #HAWMC day 14

Wow. Easy but really hard. I was so lucky & worked so hard tutoring in my off hours to work, live, & travel all over the world. I love having these memories, but I assure you sometimes they are more painful now that I'm alone & housebound. I am making my day re-visiting 3 amazing places, with J, my closest friend.

First we wake up in the coolest B&B in Tirendentes, Brazil-a tiny mountain mining town. We spent 2-3 days there about 8 years ago, & it is easily one of my alltime favorite places on earth. We will walk around, & I will be able to walk more than 3 minutes-I'll be able to keep up with him, & we will see parts of the town we missed before. Here is a link to a pic that looks identical to one of mine, somewhere in boxes in the garage.

http://www.flickr.com/photos/ricardobevilaqua/2271628610/in/photostream/

We will then magic carpet over to the Great Ocean Road in Australia, & visit the glow worm forest where you feel as if you are floating with the stars around you.

 

Then, around midnight we will jump over a few hours north of Brisbane, Australia, & go to the Mon Repos sea turtle sanctuary, where mother turtles come & lay their eggs, & then other clutches of nests erupt-the baby turtles tunneling up through the sand, down the beach, & out to sea. I got to see both one might under a full moon, & it honestly changed my life. Here's an amazing video I found...

http://vimeo.com/14136833

 

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.

 

 

 

 

 

Kony 2012

As I sit here crying & bitching cos I had 4 really painful fillings yesterday, & have to go to the dr today, I watch this-& see how lucky I am to have medical care. Watch this please-spread the word, pass it on.

http://www.youtube.com/watch?v=Y4MnpzG5Sqc

Chai bunny, false mommy to be

Female rabbits can fairly often think that they are pregnant...& Chai bunny is no different. She has a nest built up in the closet-& when I say built up I mean it's a foot high, & she goes in the neck of a sweatshirt & the inside body is full of her own pulled out fur, newspapers, bags, phone book pages, hay, etc. She currently has Sugar, the left foot of my old bunny slippers, guarding the nest-face down in the fur lining of the entrance to said hutch. While Sloan & family were here Chai took Sugar & Spice (the right slipper) into the closet on guard duty. Spice is currently sitting with his face touching, not just under, Chai's water bottle tube. She managed to sneak an old washcloth halfway across the room on its way to the nest before I got it...she keeps my life interesting in more ways than I can begin to explain. Here are a few photo-manipulated shots of her begging for treats beside my bed & enjoying them like the little whiny grunty pig dog she is ;)

 

 

 

Grieving the small

When people are around that normally aren't, as a sick pro you notice the little things. My sister, husband, 2 teenage nieces, and adorable dog are leaving tomorrow after being here a few days. We've had a great time, & today they shopped, got mani/pedis, etc. Chai bunny got petted a good while by lovely Abby, & loved her...& didn't want me to take her back up. She thumped when I put her back upstairs, as she had traced out to the full attention of someone who is sweet & is able to sit on the floor with her, & not like me-who has to reach down from the bed. Emma got awesome new shoes & Abby the cutest dresses. Cameron & I talked iPad technology, & Sloan & I talked everything. They ate out, took dad to the movies, & did the normal things. I forget how much people really live until they're around. Of course I hold no bad thoughts about any of that, but seeing a dress I might have worn, or a movie I would see on the big screen, etc, a part of me grieves, & parts of me die. That's normal, & if I wasn't that way I'd be lying.

 

 

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!

 

Czech pub crawl days

 As my parents are getting us somewhat started in the moving process, every single day seems like there are new things of mine in the garage to discuss of 'can we give this away?' or boxes to sort through. Day before last one box held some very dear treasures. It was in a box of what seemed to be my lingerie drawer, & as I don't really have a need for much of that these days it had been in a box in the garage. When asked why two shirts & some others dear things were in said drawer, I smiled & answered that they were so special they deserved to be kept with lovely things. One was a beer shirt from a Czech company I worked for, & the other was my dear friend Henry's birthday pub crawl t-shirt. I cried when I read & saw all the things on it-a Scottish flag drawn by Stevie, Zoe the cat on one sleeve, Rob's 'Marnie is cool' heart drawing, my 'pivo/piva/piv'...the three forms of the p,urals of beer depending on how many you were ordering, with a little beer mug next to it. I miss those days so much, & the friends I still have now, even ten years on. 

 

 

 

Watching the Quadrantids in bed

The awesome app Star Walk allowed me to watch the first meteor shower of 2012, while sick & in bed. The Quadrantids were fantastic & here are my pics of the shower I saw-which is nothing like it was...my camera sucks! ;)

new year, new books, new headphones

I spent most of New Year's Eve watching a Big Bang Theory marathon, reading my new books that were free on Kindle or the 3 books I won from Mira Ink. As my headphones-the earbuds that are noise isolating...necessary for survival in my waiting room hours-broke last week, I used some Christmas money and got some new ones for under ten bucks. I wasn't expecting them to get here until after the new year, but a happy surprise hit when they arrived yesterday. They are fantastic-they really drown out the outside noise and amplify the music, movies, tv, etc. really well. 

I slept through the midnight mark-and woke up around 3:30 AM. I got up, read some, watched Netflix, and tried to forget that my last kiss was over 6 years ago. And it wasn't a good one. Ugh. All in all though with my last glass of champagne and new headphones and new books, it was pretty tops considering. Happy new year to all of you-wishing you laughter, peace, great snapshot moments, surprising little joys, and fun this new year. xxxooo

The 5 year milestone

I think as a nation we are somewhat conditioned to having that saving twist-the something/someone comes in to save the day kind of ending-to beat the bad guy. Personally for me I blame sitcoms and Sweet Valley High books. 5 years ago today I was forced to resign due to medical reasons from teaching, sent packing, and was home moved in with my parents a day or so later. Needless to say it was a tough Christmas. 

I really thought that after 6 months to a year-after resting and regaining the strength from my 3 year battle with a very complicated broken ankle that put my fibromyalgia in a tailspin that I would somehow get better and start a new plan. For at least 2-3 years mom and dad talked about getting me into an apartment when I got better-I think they just needed to hold on to hope that I would rebound. Within year 3-4 thankfully for my sake that subject of job/apartment/etc. stopped. 

I consider myself so blessed-so lucky that my parents stepped in and swooped me up without batting an eye. I could be going through this and be homeless, or in a country where women aren't even allowed medical care, or in a remote part of the world where technology couldn't help me have a window out of my battered, cramped, crinkled cocoon. Along with that of course comes the crushing grief of what was lost 5 years ago. I don't feel sorry for myself-but I do allow myself to grieve. For the chronically ill grieving is an ongoing process. Everyday almost we stubble across something that reminds us of the old me, the old life, the old plan. Yet I strive daily to give myself the freedom to grieve along with the freedom to keep going. Not to a specific place or time, but just to hold on and try.