Tuesday, July 31, 2012


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

Thursday, July 12, 2012

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?


Tuesday, July 10, 2012

Who I was & what I wore

Funny how our wardrobes somewhat dictate or openly invite the world into our personalities-we show them very intimate facts about us simply by what we wear. Who I used to be vs now are as polar as opposites can be. People like me wear elastic waist to avoid buttons. Panties 2-3 sizes to big so as little material as possible touches us-for me my lower spine. Clothing becomes something to tolerate, not express. For a fashion lover like I am it absolutely sucks. I had to go through my wardrobe today to keep, donate, or throw away. Several things had literally worn out-evidently I worked & played really hard ;). Seeing my grad school/Little Rock years gutted me. Amazing how an item of clothing can hold more memories than a camera. Some items I had to keep, way to old & small, but to put in the back of a drawer to pull out when I need to remember. Here is who I used to be, that few of you were able to meet.


My absolute ultimate me item. A very thin long sleeved patchwork shirt-ripped, sewn & repaired beyond repair, & scented with Brazil nights on the beach, teaching days at UALR, & my old tangerine perfume. I so gently put one hand & arm through a sleeve, just to feel the old me again.

My orange long patchwork skirt. Usually worn with combat boots, a denim shirt & confidence. So great how a piece of clothing gives you confidence that no self help book ever could. It too was worn all over Little Rock, Brazil, etc. I normally wore it with the next item.


The simple denim shirt/jacket combo. The pockets were over the chest, & great to stick money, my ID, phone, & lip balm in...look closely at the bottom right of the pocket & you'll see the cylinder shape of a Burt's Bees lip balm. I wore this as a shirt or jacket at least 3-5 times a week.


My wardrobe had loads of shirts & jeans paired with blazers & tennis shoes. The blazer dressed it up for teaching, & the shoes for walking all around that seemingly huge campus. I loved mixing stripes, so I often wore pinstriped blazers with totally random striped tees.


My favorite statement...'your future ex-girlfriend'. The dating scene post divorce, being overseas for a decade, etc was a new world. I was shocked people still stood you up, broke up through emails, & other fun dating no-nos. I quickly developed a cynical outlook but deep down was the 12 year old asking 'why didn't he like me?'. This shirt at least made me feel that to those possible idiots I wasn't as sweet as I seemed in that aspect.

I don't know who I am now. My wardrobe reflects so little of my true nature, & that is one of the unspoken losses invisible illness people often face...so the next time you see someone like me, remember them for who they used to be able to show.

Monday, July 9, 2012

My bed is an island

As I am most comfortable in bed-but not reclining-rather sitting with my legs pulled under me with my back not not touching anything, I plan in my new apt behind the house to be as me-centric as possible. To plan it based on my needs rather than just how it looks, which is a strange mind shift. I'll have a small sofa for family & guests but my new (old) bed will be my comfy universe when we move in a few days...I'm mentally planning ahead so I can make life easier. Dad finished painting my room today, with Chai bunny propping up on the first step-dad's fallen in love. As the walls dry, my bed is in the middle of the room, tv on the floor, & every piece of furniture in the center. Chai bunny loves figuring out where to jump up in bed with me-& is dashing around the room like the busy Binky bouncy bunny she is-& I try to keep my eyes open & plan on how to not bite down so hard in my sleep I wake up with TMJ migraines like today.



Wednesday, July 4, 2012

My independence days

When you become a professional sick person, you give up loads of things you wouldn't have ever thought an issue. Holding open a book. Needing fresh sheets but not wanting to bother your caregivers. Not being able to cook. Not being able to pick up your nephew.

I recently watched the movie Drive through Netflix streaming. It woke something up inside that I have missed so much. From the moment I could drive the car & endless roads out by our local lake became my refuge. I'd go & sit in my special scenic spots with my now forbidden diet cokes & listen to music, write, take pics, etc. Driving was freedom. I spent hours upon hours driving & finding meanings to life ;)

Watching that movie that excitement of the journey hit me hard. The title song Nightcall would be a perfect example of a song I'd listen to nonstop if I could. The dark, French electro-pop with shadows would last me miles around the beautiful huge lake I spent so much time around. I miss that independence-that lake-that magical marriage of the perfect music & the perfect drive.

Sunday, July 1, 2012

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.