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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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.

 

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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!

 

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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 first...so 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!

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Star pills

Recently I started following a 365 photo idea for the day. I get so bored of pics of me, so I decided I could apply some of the ideas to my documenting pics. Today's was a set/4 of a kind. I just so happen to take 4 key pills for pain & muscle relief (along with a denizen of other vitamins, maintenance meds, etc). As I put them out they looked a bit like planets & moons, & I'm obsessed with anything solar related. I did some photo manipulating & dreaming of my pain pills orbiting my brain, trying to figure out what part of me needed them most. Green moon? Off you go to the left jaw...it's locking up & the TMJ is kicking in. Long oval white? Orbit & dissolve some over the left hip then go directly & release in the left sciatic nerve. Purple moon? Ok, top layer goes to the pinched nerve. 2nd layer? Neck ASAP. 3rd layer right side sciatic nerve, & stay through the 7th layer. Go then & rest on the spinal tap site. White meteor? Go full force & crash directly into the brain's pain center. As usual it is misfiring. If only I had a little space ship & I could go & fight myself inside my own head, & fix me with a light saber.

 

 

 

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.