Saturday, July 8, 2017

Can I Get a Manager

I'm checking out at PetCo. The card reader didn't make the GUNH GUNH noise. Lady behind me says "Oh I miss the days of only swiping." I scoff and say "Remember the old days when they brought out the Manager and the machine that went CHA-CHUNK and then gave you the messy carbon receipt?" She giggles, then startled says "You must be A LOT older than you look." I lean in and say "Oh, I am."

Thursday, April 13, 2017

Advantage Patience

I have only posted to this blog three times since July of last year. Maybe some people noticed, maybe not. I am blocked, for many reasons. But the main is this; pain.

Pain disrupts sleepy time, awake time, why am I not sleeping time and all the times in between time. It washes over every aspect of daily life and you can't seem to scrub it off. But, then, there are those breaks in the clouds. One day. A bright shiny day where that overwhelming monster of pain is so small it barely casts a shadow. You feel so close to normal that you would skip if you still could. So you grab that day and ride it till you can barely stand, hoping that tomorrow you'll get back in line for the same ride.

Showing how much pain you are truly in (and I mean truly) doesn't fly so well on social media, or out in the big bad for realsies world. Phrases get thrown around such as "pity post" or "attention seeker" and worse. So much worse. Instagram and Facebook have somehow turned into this realm of filtered filters through filters (guilty.) No one wants to spend time on anything too real. Anything that might bring them down from the projected reality. A social face of all is well. If I'm being honest, as a chronic pain sufferer, I don't like to readily admit the levels of my pain. I fight it. I seek every distraction. It doesn't always work though, and when it has been months and months on end, my optimism can become depleted. Never emptied, but that pool is hella shallow.

Now to that term Chronic Pain Sufferer. To suffer is defined as;
1. to undergo or feel pain or distress: 
2. to sustain injury, disadvantage, or loss:
3. to undergo a penalty, as of death: 
4. to endure pain, disability, death, etc.
I get it. It fits. The disadvantage. Yes. The Loss. Yes also. Then I think of the advantages I've had in my view on the world and my empathy through EDS and pain.  I have had losses in personal relationships and the distress it still causes is something I am working on daily. I wake up every day grateful that I have people in my life that want to go and do things with me. Friends that want to spend time with me. Not everyone has that. I do. I am totally bragging that I have friends. Great and wonderful beautiful friends. They know I'm in pain. But I don't show them all of it. They see the crust, the top of the iceberg. Only My Mom has seen me in full throws. Tears that you aren't quite sure when they will stop. She's the safest net to dare allow myself be cradled. 
I want to switch up the pain name game. I've been thinking of myself as more of a Chronic Pain Endurer rather than a sufferer. With endure being a verb, I imagine it as my actions and reactions during and owing to pain. Endure is defined as;
1. to hold out against; sustain without impairment or yielding;
2. to bear without resistance or with patience; tolerate:
3. to admit of; allow; bear: 
4. to continue to exist; last: 
5. to support adverse force or influence of any kind; suffer without yielding; suffer patiently.

To hold out, with patience and by doing so sustain without impairment. I think a fine trick would be to continue to exist, without yielding to pain. Ultimate EDS Merit Badge goal in sight. 
My definition of not yielding isn't the same as it might be for everyone else. For now, one piece of my not yielding is sharing how it is to live inside the body of a human with Ehlers-Danlos and Thalassemia without worry of how uncomfortable it might make the people in my life and social circle that don't know what to say or do. I've never expected anyone to have the right best things to say. I've never courted pity. I promise. What I have courted (possibly vainly) is a connection to people with life-long, persistent illness and pain. To maybe let that one person with a chronic illness read that one phrase and go "Oh my word, that's just like me" and then the world gets larger and smaller simultaneously.
Not everyone on this blog and my Facebook is interested in how much it hurts every time I eat or that I dislocated my knee AGAIN! So, the answer is to write on my EDS blog, and not publish it to Facebook anymore. I'm hoping by releasing myself of that apprehension, the part of my mind that needs to be writing for this blog will be free as well.

This blog will continue to exist, as will my pool of optimism.

Thursday, April 6, 2017

Press 2 to get Alive

"Yesterday was plain awful" (That was for you JD.) So, to lessen the awfulness and distract me from the pain, The Moms came for a visit.  Because she's the sweetest best kindest most lovingest Mom to ever be. True story.

We talked, giggled, laughed at bunnies and binged TV. I'd been hording a bunch of episodes of the British Baking Show in the depths of my DVR just for her to see, because they had Tiramisu and Trifle on them. Her faves. Then she saw her first ever episodes of Psych. I started her with the pilot because Ion TV is doing reruns and I could record from the beginning.

There was no way I could stand to cook so I ordered delivery from Pizza Runner. They have the best Vegan Breadsticks (my Mom loves them) and they have other great vegan options. But the funniest thing was the guy taking my order. I'm asking him about the pesto, if he likes it as much as the marinara when he stops me...

Guy - Oh man, you have like, the prettiest voice. Ever.
Me - Well, thank you. That's nice to hear. Now, I have a question about the turnovers. They're vegan too right?
Guy - Yes. We just make them without the cream cheese.
Me - Fantastic. I'd like a cherry one. That'd be...
Guy - (Interrupting) Your voice is just. So. Pretty. I mean. Wow.
Me - I'm glad you like it.

Dead air.

Guy - I guess you'd like to know the total huh?
Me - That would be perfect.

I made sure to say goodbye extra pretty for him. Nice to know even if my body is wracked with pain, my voice doesn't have to convey it.

Wednesday, February 1, 2017

Not Enough Memory

Today is Stephie's Birthday. She would be 44 years old. She's been gone for 12 years. Those are substantial numbers and even a more substantially large hole in my heart.

I get shy when I begin talking about Stephie. I feel exposed. I remember so much about her everyday and yet I hardly have any pictures of her here at my apartment. Most of them are in an album at my parents'. She left before selfies were the norm and cell phones were attached to our bodies. I remember her bitching about dial up and AOL on her clunker PC so she could message me.

I see her in people's faces often. Mostly their mouths. She had this distinctive mouth. I call it a Stephie mouth. I'll be watching a movie, or catch a rare news report and I'll freeze. Someone will be talking and all I see is their mouth. I sink back into myself and sometimes I cry. Other times I smile that I'm so lucky to still be here getting to remember her in something so random as Tori Kelly's mouth.

I hope wonderful words of love come out your mouths today.

Tuesday, October 11, 2016


I haven't written a blog in three months. Three. Months. I've had things to write about. I just didn't. I stopped myself. I kept all that stuff locked inside my noggin and now it is lost, crammed, rattling about with all my other ideas, plans and fears that lay the ground for anything I might write. Or not.

Still, something got me pondering as I was driving yesterday (and it was a scrumptious day) windows down, new fave radio station 103.1 The Wave playing excellent 80's songs one after the other. I was taking the scenic route home, getting as much leaf peeping in as possible when Spandau Ballet "True" comes on. 

The line "This is the sound of my soul" hit me.  It never really weighed that much when I first heard it all those lifetimes ago. The song was more about Molly Ringwald and Sixteen Candles to me. That moment in time.  All those pop culture references.  A good baseline for everything 80's. But right then, with the breeze and the leaves and that line "this is the sound of my soul" I wanted to know what the sound of my soul was.

I knew immediately what Todd and Dad would say, they would say the sound of my soul was a fart. Then I wanted to know what my friend's souls sounded like.  Was it the ocean? Their children's laughter? The Main Street Electrical Parade?  Beethoven's Violin Concerto in D Major? Rain?

Then I needed to decide why this even mattered to me and what in the world my soul would sound like and if I even had one. Or wanted one.

Then I walked in my door and I saw my Bunny Boys.  Then I heard them chomping their hay.  And I knew. The sound of a soul, any soul, is what gives you peace. Listening to my guys chew on fresh hay is that sound.

I had a ten pound box of hay delivered today.  All is right with the world.



Tuesday, July 19, 2016

Half Baked

I talk to the television.  Not like my Dad does, he gets riled up at the news and commercials.  Okay, I would scream profanities at the Arby's ads if I allowed them to play, but DVRs are a wonderful thing.  No, my talking to the television is more along the lines with plot and character development.

I hold my hands up in mock despair when a character does something that has either nothing to do with their beliefs and original story line or there is an action that completely contradicts their core. I end up saying "well that was stupid" a lot.  Or, "why was that even necessary?" 

This talking to myself (or muttering) continued into daily actual for realsies out-of-doors life while I was shopping last week.  I was trying to pick out the best hot dog buns.  I don't buy hot dog buns on the regular.  I splurged and bought some fancy vegan kielbasa (bring it on Jeff) so I needed some buns.  As I stood there, weighing the cons of this brand and reading the ingredients of this other, I heard myself, chittering away.  Then I noticed the bread-man stocking shelves.

Me - "So, lucky you.  You got to hear my one way conversation with my crazy self."

Bread-Man - "You should hear me.  We drive ourselves crazy in order to stop ourselves from going crazy."

*Side note.  With the heat being so overbearing I have been opining about changing the expression of "The Best Thing Since Sliced Bread" to "The Best Thing Since Air-Conditioning" because I mean in the history of things I would think we as a human race could survive with having to slice our own bread.  I'm team Air-Conditioner.  Except for my Bread-Man.  He's the best thing to happen to sliced bread and rationalizations.

The Bun

The Bun
If you don't like rabbits, you can suck it, shove it and then go soak your head.