Saturday, August 25, 2012

Happy Anniversary Lessons

It's my parents 49th anniversary. After the things they've been through & survived-it gives me hope that that I can make it. After the great neuro visit other than the decision to not do spinal shots for a bit mentally I'm feeling more sound. That things might just work out. He did a nerve test that had me using a walker for days after & completely bedridden. Not fun but necessary. He felt I had MS but we reassured him that my spinal tap, etc came back ok. It's scary that my drs see this possibility after having me squeeze their hand & I can feel my strength just not where it once was...& I can sense it in their mannerisms. Alas, I loved the new doctor-he kept me at my pain med regiment, which from his nurse I understand I'm only the 2nd person he has written high power meds for-she said he felt I was sweet & trustworthy & was knowledgeable about my conditions-& that I wasn't out to take advantage. It thrilled me that he saw that in me. My little purple house is coming along slowly & Chai bunny has made it her own. She loves getting in bed with me, searching for treats I keep hidden under a pillow. I love having privacy but also having mom & dad only a few feet away is comforting. Sorry if this seems disjointed-it is. I am. I've been so exhausted I can't seem to do much of anything after seeing the dr a few days ago. That's ok-if anything my parents have shown me not to give up-through extreme economic hard times. The 2 year illness & death of a child to cancer. Through numerous moves-so numerous I can't count. To the usual family strife & reconnecting. To real life. Happy anniversary mom & dad, & thank you for showing me lessons in surviving in real life & time. I love you both so much.


Monday, August 20, 2012

A bit like House, MD

Anyone with chronic pain comes to realize in time that the never ending stabs of constant hurting can & does come out as anger. I loved House, the TV show-though I'm not the crazy puzzle loving jerk I have my moments. Every single time I see my cane I get sad yet angry simultaneously & want to paint racing stripes on it-my sarcasm runs deep. We never mean to lash out, yet we do. Most of us immediately regret it & hate ourselves for letting our pain spill out onto someone else's life. Recently I publicly said some things I regret-as they were spoken out of sadness for the past & friends I used to be able to count on...& took it out on someone who wasn't in that category. My lost past is probably the biggest source of emotional pain I've got. Anyway, I talked to the innocent person & apologized, but I hate that I let my pain hurt him. While I find venting in the right forum helpful, I must remember to spare the innocent ones.

My great uncle's cane matches my Indonesian triangle piece so well...maybe racing stripes aren't the right way to go ;)


Caned sadness

Sunday, August 19, 2012

Sleeping lessons

After finally moving into my motorcycle workshop turned my purple apartment, I've been sleeping with less pain. Being back in my orthopedic mattress sleigh bed is a huge part, along with a few adjustments. My house is small, but a separate house & perfect for me. I made my bed a focus as I spend most of my time in it-it kills my back to sit in chairs/sofas/etc, so sitting in bed is my answer. I stacked 4 pillows behind me against the headboard & 2-3 pillows under my knees, creating a recliner type effect. It really seems to alleviate a bit of pain while sleeping.



Dad & I put together the Tetris like impossible shelf so my records have a great place to live! After we got a toilet & sink put in mom & dad donated 2 large bookshelves to create a privacy barrier around them, & I found my old James Bond poster-& I'm thinking of hanging it up so if anyone ever broke in they'd see a life size picture of a man...the man guarding my home. I can't think of a better bodyguard. ;)


Of course the shelves & walls will be filled with all my art, overseas treasures, etc but we are unpacking & setting up 2 households so it will get done in time. We are getting a WiFi extender as I am barely getting a signal out here & am having Internet & Netflix & Facebook withdrawals-so hopefully that will solve that problem. I can't live without my Netflix!

Wednesday, August 15, 2012

My amethyst house

As purple is the awareness color for fibromyalgia-& a longtime fav of mine, dad so lovingly painted 2 walls gothic amethyst, a grey-silver light purple & the other two a dark eggplant color called purple blanket. I love the names of paint colors! He had a toilet & sink put in-I'll use their shower in their house for safety, & we angled my bed against the two white shelves we're using (that mom lovingly donated to the cause) as a privacy barrier in the corner by the bathroom. As I spend so much time sitting/reclining in bed, I wanted it a major part of the plan so I can see the tv, face the love seat for company, etc. I had gotten the black wooden sleigh bed back in graduate school-it has 4 spiral silver knobs on each corner that I adore. Mom & dad gave me the gorgeous batik bedspread (that perfectly fits my queen bed) they got in Indonesia. It's perfect! Chai bunny is loving the huge space compared to the only place she has known-the old bedroom. Though the apt is basically an efficiency it is huge to her! It has a garage door that we are covering with my massive vinyl collection on shelves & an old school pull-down school map. I love that I have built-in shelves by the bed for keeping my cords/iPad/kindle, etc right there in reach. This is my 2nd night & I'm just thrilled! Thanks for all of your great wishes! Also a huge thanks to mom & dad, & my brother for finding the guy to put in my bathroom-he chose a great guy.

notice Chai under the table...

my magic bed

media center & my Indonesian triangle shelf

Chai bunny in bed

Watching the last 'Closer' from bed :)

Record players & shelves


Headboard details & gorgeous eggplant paint!


Monday, August 13, 2012

Moving to apt!

An hour-ish Chai bunny & I are moving into our apt/house in the backyard of the parents house! We've been dying to get out there but we had to get fixed in the main house pics to come! Here's the paint colors & my one of a kind Indonesian Batik bedspread from our time living over there...& finally I'll be back in my own black sleigh bed after 6 long years. Much to celebrate tonight!


Chai bunny adopted my childhood friend Marshmallow from my dear friend Laura!

Tuesday, August 7, 2012


Some days the impact of what I CAN'T do overwhelms me. I've been living this way for years now, but certain days I wake up from dreams in which I'm not sick, then realize I still am. It's quite a cruelty joke-in my dreams I run, dance, love, date, am with friends...then the stillness hits me.


Friday, August 3, 2012

Maybe miracle

After possibly the toughest 3 weeks on record, sometimes you catch a break. After realizing I'll be without meds (quite dangerous) for a two week period until seeing my new neurologist, I left a tearful message to my beloved former neuro, begging for help. Normally they can't give you certain medications unless you see them in person, & I knew my body couldn't handle that drive, much less leave Chai bunny. Yesterday the nurse called, & Dr. T agreed to give me a two week courtesy RX-& a family friend will pick it up & mail it to us ASAP. Until it gets here I'll be nervous, but the fact that people are helping restores my faith in mankind. Chai bunny is doing much better-she still has several mammary tumors, but hasn't has anymore blood in her urine, & is eating & drinking normally. We aren't out in the apt yet, but being close to my parents during this time is a great thing. Dad's been painting my apt-gothic amethyst & purple blanket-the first a silvery light purple & the second a deep eggplant purple-I love it! Mom has been finding all my treasures from my former life & some new ones :). Today I'm resting a bit easier.

Wednesday, August 1, 2012

Gutting realizations

For those of us cursed & sick, we realize the distance of family & friends very quickly. Today I find someone who I helped in past years (before kids & marriage came into play-again) to the safety & detriment of my myself-including hundreds of dollars-that some people have the unique gift of 'growing up', having family, & getting the leisure of forgetting those along the way-kids, marriage, etc that people like me don't have. It's a smashing of heart realization that many, even family, leave you behind to protect their new family. I get it, but I don't. I didn't chose this-I'd give anything to be behind that white picket fence, but that's not in the cards for someone like me. So I suffer-through this move, weeks without drs or help, & face the pain alone, while others home life sleeps in peace & without chance. They slumber & dream while I lie awake, screaming to no one in particular in agonizing pain. What a difference 6 years makes.