Opportunity to bust down some barriers…

Just keep swimming. Just keep swimming.

Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

Old pictures and updates…

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

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Hugs all around,

xo

Bek

Checking reflexes…

Today I was talking to Jeff about some spine info I found on the internet.  I haven’t been googling about my shoulder, and my arm being numb and shaky. I was going to do that after the MRI and it has gotten somewhat intermittant rather than constant and constantly worsening… But it’s still there…

And my legs are weak.

So I know something is going on.  So I googled.  I read aloud to Jeff.

And Alex heard me.

He comes in to the bedroom, smiles and me and

“BAM!”

Slams my left knee cap with his solid hardwood toy tool bench hammer.

Shocked the daylights out of me.

He told me “like at the doctors”

I replied “they use a rubber hammer!”

Jeff came to see what the fuss was about and I lost it.  I just cried and cried and cried, while I really wanted to laugh but the tears just kept coming.  It was funny, by itself it’s funny…..But my body does not agree…  My back hurts, it feels like a stack of cement blocks grinding against each other, whittling themselves down to nothing.  It’s not just pain, it’s that nails on chalkboard, things not moving right feeling that won’t quit.  My right arm isn’t working right, it’s numb or all pins and needles and the intention tremor is worse. And now my legs feel like I just ran a marathon and went on a bar crawl- sore and rubbery, wobbly.

Blech.

Kiddo feels so bad about the hammer thing.  He was trying to help. He is always trying to help me feel better.  And that makes me feel so terrible.  I want him to focus on being a kid, I want to be able to enjoy his childhood and his life and I really want to participate.

I hope this is just some temporary swelling thing and nothing that requires anything else to drag the last of my energy and my strength away from me.

Will update soon…

xo

b

Two Tip Tuesday!

There’s no wrong way

Originally uploaded by CleverIndie

I’m going to start collecting tips and sharing them…Two on Tuesday, ok? Cool. Make sure you get the two tips next Tuesday by subscribing via email!

Clickity click here!

I love reusing spools from my chain purchases to hold small things… They are usually wide enough that they are more tip resistant than other containers, which is an important feature for me, what with being less than grace personified and all…

I do quite a bit of work either on a high countertop/bartop where I can stand or sit (mostly stand), or sitting on a softer surface with plenty of back support… Things tend to get flung and knocked over (again, another reason why I hesitate to work with glass and gemstones and if I do I always double the recipe) in either location, this contraption prevents that a bit…

Basically, I packing tape one hole, with a little bit of paper so it’s non stick on the inside of the well… I have, in the past, used double stick tape to tape this to my tray table/lap desk/workbench, but in each location I wound up getting too cocky, started talking with my hands (I’m a passionate hand talker…), and kablammmm! small bits (headpins, ear wires, you name it) everywhere….

And, when working from one of my satellite locations, I like to wind my tape measure around the outer portion… So it’s handy…

Another tip? When Target has silicone baking mats in the dollar section near the entrance I grab a few- they are easily cleaned during messy kid crafts (yet they give kids a colorful background and contrast- very helpful for some kiddos) and they are great when working with things that tend to roll away, a little non-slip grip and cushioning…

OK, that’s all I’ve got for now…

Hugs all around,
xo
bek