By the bootstraps…

It’s been a little over a month since my new diagnosis and I have been trying to remain active. Moving around is supposed to help me feel better but I think it’s just making me tired.

I’m ending my days so stiff I can’t even turn over onto my side without excruciating pain erupting all over my body. I start my days with a pounding headache, tight jaw, and aching hands and feet.

While I am moving around I feel okay but when I stop everything seizes up. I am pretty sure I actually turn to stone. Well, highly sensitized stone. I’m just not sure how to fix that part. I recognize that moving around makes me feel better but I am failing in finding a solution that keeps me moving all the time. Maybe I need some sort of robotic chair and bed system that moves my limbs around for me while I rest so the overall effect is that of always moving but I still get a chance to sleep and sit the fuck down.

Until I discover/invent such an apparatus I am stuck pulling myself up by the bootstraps each day and convincing myself that moving around all day is worth being rendered painfully immobile at night.


My arms aren’t big enough…

I am struggling with what happened in Orlando. I feel this desperate need to wrap my arms around the entire LGBTQ community and let them know I value them. That I find their existence wonderful because it broadens the “traditional” meaning of love and opens the world up to everyone. That the way they embrace color and sex and music and dancing during Pride makes me wish I were a member of their community.

My arms are too small to wrap around an entire worldwide community and Orlando’s blow struck too deep for the love of one person to overcome it.

But I can add a drop of acceptance and love into the pool. I can watch it spread out in waves and get bigger as other people add their love in too. Drop by drop each of us can build an ocean of love big enough to wipe away the hatred and create a still and peaceful pool of acceptance. A place where love is recognized as love, and accepted with love, because damn it, it’s love. It’s something so precious we all search madly for it over and over again because we need it to live. Not to exist, but to live.

We should be thrilled to see the number of ways love happens grow. There is nowhere near enough love in this world right now. It is a world ringing with hate and vitriol and separatist thinking and US vs THEM. The world we currently live in isn’t the world I want. I want a world where freedom doesn’t mean the opportunity to think and behave exactly like the dominant population, but where freedom means…free.

So I am going to keep throwing my arms around the people I know in this community. I am going to keep adding drops of love into the morass of feelings everyone is swimming through after Orlando. I’m going to continue to be an ally and fight for equality and that vision of a world where love truly wins.


Fibro Fog or Fuzzy Focus Fun…

The most irritating aspect of Fibromyalgia is my complete inability to pay attention to …


any one thing for any length of time. I used to have the ability to multi-task like a champ and now a single misplaced comment can derail my brain more effectively than a head injury.

Example: I decide I want to make a snack, apples with peanut butter, because I am hungry. I leave my bedroom and begin to head down two flights of stairs to the kitchen. On my landing my mother calls to me from her study to ask me about my plans for dinner that night.  She and I discuss dinner. During the discussion I feel I need the restroom. I continue downstairs to use the bathroom and return to my room afterwards having completely forgotten that my initial decent was to procure food for my tummy.

One would think my tummy would remind me but it turns out my medication makes hunger go bye-bye so I will likely only remember to eat again once my husband comes home from work and asks me what I have had to eat that day.

I may weakly tell him I tried to eat but got distracted.

If I remember.

Bloody Nothing…

Fibromyalgia sucks broken, pointy, shards of glass.

When I am not moving around I feel as though Medusa has cursed me with her snaky hair and I am slowly turning to stone. When I am moving around various body parts audition for the role of broken bone, sprained ankle, etc. These body parts are just fine,  btw, they just want to make sure they have mastered their act in case they are ever called upon to play it.

Today I worked in the garden after PT because dry needling deep into your shoulders makes you hurt for days if you don’t move around afterwards and I couldn’t think of anything better for shoulder work than pulling weeds. Especially weeds that reached several feet in height. So I pulled and tugged and yanked. I dug and uprooted three lawn bags worth of weeds and afterwards my shoulders felt pretty damn good!

Then my right arm, halfway between the elbow and the wrist, started to twinge violently every couple of minutes. I would be fine, then I would feel as though I had bones pushing through my skin. I would gasp and freeze and before I could look at my arm the sensation would go away. My arm, not too surprisingly, did not have any bones sticking out of it.

After weeding we walked to get the kids and then to dinner. All in all we walked over 5 miles together.  At first I was doing really well. I felt good! Sure my hips would feel poorly every now and then and my back was yelling at me but during the walk to the restaurant I felt OK.

We sat down at the restaurant and ordered dinner and then I realized my mistake.

I had stopped moving.

All of my muscles stiffened up immediately. Monkey asked me if she could use my phone and I wasn’t sure I could reach down to get it out of my purse.

We still had to walk back.

During the walk everything ached and moaned. My left foot started sending out broken signals every few steps. My hands started to throb intermittently. My hips felt like they were breaking and my legs burned as though I were running a marathon instead of walking at an easy pace.

Now I am home and lying down. I am writing this even though my fingertips hurt when I type.

Dan and I, on one of those late night giggle-fests we sometimes get, came up with a drink called a “Bloody Nothing”. I am sure the path we took creating this drink is something you had to be there for but it’s a Bloody Mary, no vodka, no mix, no ice, served in a broken glass. It’s a Bloody Nothing because you are drinking broken glass.

Fibromyalgia is a Bloody Nothing. It’s all the pain and torment of a million problems, but there is nothing anyone can find that is wrong with you. Just the feelings you have, your nerve endings firing off for their own amusement.