Friday, January 7, 2011

"And when I look into the future I see danger in its eyes"

2010. The year I took it up the rear end from so many doctors, I should have been the one getting paid.

How I learned to see doctors as a cabal of siblings and half-siblings, some of whom know the others are rotten to the core but refuse to acknowledge it, at least to people outside the 'family.' Oh, and psychiatrists are the redheads.

My mother is in her early 50s. She is developing POTS. I worry about my sister as well and I hope that she is not affected as I am, that she can go further in life and like I aspired to, make every dream come true.

How can I give up on this wonderful gift, my one and only life? To me the stages of grief and loss feel like hanging onto the edge of the sheer cliff. Anything to get back to the way things used to be. Hauling myself up as hard as I can, I see footsteps of friends going about their daily lives. They can't see me and I can't see their faces. We're strangers again.

Acceptance would be realizing the side of the cliff is itself solid ground. Just a different sort of solid ground, meant to be traveled in another direction and in a different way.

In OT I held a pen "correctly" for the first time in my life, thanks to a sample ring splint designed to hold my the joint at the tip of my finger in place. I had an image of myself, staying in morning and afternoon recesses in the second grade, practicing cursive Ks and Qs, my hand aching mercilessly. Being made to write phrases over and over for punishment and then having to do it again when my writing became illegible.

None of that had to happen. I had actually started to believe it myself: that I was willful, stubborn and flaky.

I wrote my name over and over again on the yellow Post-It K. passed to me.





Maybe some comfort for that little girl with the sore hand.

As a rule, I never make more than 2 resolutions for the new year. This is what I find I can keep up with.

But I find myself at a loss for what to resolve. I started with finishing my manuscript. That was easy enough. But what else? There are things I need to do, like file bankruptcy, but what sort of resolution is that?

Because it began to snow today, I am in bed. I am hoping the drug store is not feeling judgy today and will fill my out-of-state pain prescription...which wouldn't have to be out-of-state if I just had a treating doctor with a listening ear, an open mind and a compassionate heart.

Like my new primary. She had been my grandmother's doctor and I remembered her kindness. And to my surprise, she is familiar with EDS AND connective tissue disorders. She used to work in a research clinic and has seen her fair share of both.

She asked if there was anything I needed right away and I said "No..."

I meant yes, but I was afraid. When I meet a doctor now, my essential emotion is fear. Carefully disguised fear.

I just can't seem to help it.

The thing that went wrong during my surgery was I started bleeding and wouldn't stop. I'm still bleeding. Not a gush, but a slow leak, like having a period that just won't stop. My doctor is dragging his heels about it, and I'm feeling more lethargic by the day. How can I not be afraid. He offered to destroy my uterine lining (which would sterilize me) and I said no. Then he acted a bit as if I were being unreasonable. But I'm thirty not fifty and as much as I don't want to pass my fantastic genes to my children, I'm not prepared to scorch the earth just yet.

He said, "Well, we have to stop the bleeding." I said, "Yes we do."

And then, he told me to have my blood drawn so we could keep an eye on my dropping hemoglobin and take action when the time comes.

I had such a wonderful holiday with my sister too, seeing Cirque du Soleil, eating Chinese, shopping the after Christmas sales and drinking a good four bottles of champagne.

I kind of hate that this is hanging over my head at the moment. It's always something.

But I'm not done with this life yet. I'll make something of everything yet.


Ericka McCarty said...

"She asked if there was anything I needed right away and I said "No..."

I meant yes, but I was afraid. When I meet a doctor now, my essential emotion is fear. Carefully disguised fear"

Distrust is one I also deal with, too. I don't trust any new doctor I meet to be smart enough to know what EDS, POTS, and various supporting cast is. I don't trust them to care enough to not just completely dismiss me outright. Even though I have papers and dictations from one of the top EDS experts in the US stating that I have EDS, I don't trust doctors here to believe Dr. Specialist's evaluation.

When I finally get the nerve to see a doctor around here, I get met with a lecture of "you should have seen one of us a LONG time ago!!!" If their colleagues weren't such asses and scared me away, I would have gone a long time ago.

I'm sorry you have dealt with your own shi++y doctors... and I pray that you, and everyone else who deals with such chronic, debilitating and painful conditions finds a doctor who treats them with compassion, caring, and intelligence.

Diary of a Short Girl said...

It's sad how you can't really trust doctors anymore. Nice quote from Janelle Monae, great blog!

Yvette said...

Ericka, finding a suitable doctor to treat just the two facets that I am trying to get treated (pain and instability) has proven to be the most difficult task I've ever undertaken. It is right up there with my masters thesis and threatening to overtake it. I feel as if I've wasted a year of my life (and a LOT of money) trying to find someone who'll just listen to me a little.

I have (some) confidence that this new primary will be a good doctor to me.

Yvette said...

Short Girl (If I can call you that!) thanks for the compliment. I love your blog as well (I was clicking around for ages looking at looks.) I'm 5'3ish, and I love reading petite blogs.

And I love Janelle Monae. I've had her album on repeat ever since I got it. Everybody should be listening to her.

Em said...

but im not done with this life yet, good for you, and thank you for writing this line. i will remember. x