Monday, November 14, 2011

Frustration and Hope

I started working on this post...a good long while ago.

I started this blog under the impression that I could write no matter how I felt. This month taught me otherwise. I spent 12 days stoned out on Vicodin, and the other days working or just trying to keep up with the exhaustion, housework, and the piles and piles of writing I need to do.

This month I watched things fall away, one-by-one, and I didn't have all that much in the first place. Stupid things like Facebook games and TV shows I was too tired for, and big things like my work with Chandler and, once or twice, personal hygiene.

As my pain has intensified and the fatigue took me over my mood plummeted. Why me? Why now?

Through January and the beginning of February I had the best month and a half...the best month and half that I'd had in a long, long time. I remembered how I used to feel when I was young, athletic, enthusiastic. I felt creative and started playing with costume design and for the first time I realized I had talent. Talents. When I could move and breathe and not have to stop unless I wanted to...I felt strong. I felt free. I felt powerful. I wasn't really any of those, but at that point I was, more than I had been in a decade at least. And I could see myself working at getting stronger. I was in a position where I wasn't too sick to grow, much less too sick to imagine growing. I was sad my friends never got to see me like this, never got to enjoy this person...she's a lot different. She can be.

This month makes that little window of time look like a sick joke.

And I'm so frustrated with it...I'm so frustrated...there's an enormous weight on me. I'm literally (and figuratively) being held down by this enormous force and nothing can get it off me. I can't look for work as a receptionist or whatever because I can't work 9-5 for 5 days straight right now-- much less a theater job. I get so angry when I hear someone talk about costumes used in movies or on TV. I get so angry. I get so angry because this thing is holding me down and no matter how much I kick or punch or scream it doesn't move and no one can help.

I worked two days in a row the other week...I spent 8 hours awake over the next three days. I get six to eight hours of consciousness a day, with four to six hours of functioning. Not good functioning, just functioning.

This isn't living. It's barely existing.

So what now?

Well, not a moment too soon, I had a wonderful trip to see a new gynecologist. You heard me. Wonderful trip to the gynecologist. Let that sink in.

She was smart and funny, and listened to me. Made me feel like I wasn't crazy. And talked to me like I was a human being and not a sock puppet like female doctors usually do.

And she said I was probably right about the endometriosis. Again, let it sink in.

She said I was probably right about the endometriosis. After more than six months of people doubting it was endometriosis I had someone say to me, "Everything that you're telling me says 'endometriosis'."

It still could be something different, but as of last Monday my diagnosis is "endometriosis" and not "hypochondriac." (Mystery Diagnosis and Other Medical Issues)

And I'm getting treated for it.

The first step of endometriosis treatment for new doctor, Dr. A., is birth control pills to make my cycle lighter and less painful (Loestrin) -- mind you, "heavy" for me now means I have to use regular tampons instead of light on my one "heavy" day, but the lightening aspect is so I have less of the stray fluid rolling around my abdomen and hurting a ridiculous amount.

And I'm seeing Dr. S. tomorrow to tell him to either re-up my dosage of Lyrica (Side Effects) or move on, because I can't take another month of the elevated fibro while I'm waiting for the endometriosis treatment to do something. I can't.

Sometimes I think about what I'd do if I could. I daydream about running. I fantasize about having a real job and still being able to handle the functions of daily life at the same time. I wonder what it's like to not be afraid to shower because it's not going to feel like razor blades when the water hits my body and the towels won't feel like sandpaper when I dry off. Would I be able lean against the edge of a chair, table or counter without having to flinch away? Could I brush against something and not have it burn for 20 minute after?

At least I still have the strength to hope.


  1. Hoping for a recovery for you, so you can share your wonderful talents with the world!

  2. Just came from regretsy and find the posts of yours I've read so far an inspiration. Not in a "shallow" don't-complain-while-people-have-real-problems way, but because of the clear feeling of what "being alive" is like ... after all, most healthy people unknowingly confine themselves and their abilities. I think having this point of view will make sure you'll live life as you like to.

  3. Oh, Val, you're so incredibly sweet. I can't tell you how much it means to me that I have your support- it's truly, truly precious to me. Thank you so much.

  4. I don't have the words to tell you how happy this makes me, Rose! You've gotten from this exactly what I intended, and what I've hoped for since I started this blog. Thank you for your support, and please come again as I'll begin posting again soon. Take care, and please take my message to heart ;)