Knots of Humiliation

It's been an embarrassing month here. Dr. S. changed my birth control pill prescription to the much cheaper generic form of Loestrin, Microgestin.

The price is nice, but so far not worth the havoc it's wreaking on my body.

After about a week and a half on the new pills my cheeks, chest, and shoulders formed very large, swollen, and extremely painful lumps-- like boils or something, only they never come to a head, they just sit there deforming me.

And another 10 pounds showed up out of nowhere, because that's what I really needed.

I've felt so humiliated. And I know I shouldn't, really, because these are things I have no control over. My family knows it, sort of, and my friends are understanding, but I can't help but see how I look-- especially to strangers, since they have no idea, and it's not like I can sit everyone down and explain why I look like this.

Which is so horribly superficial...and then that's embarrassing...

Speaking of, the bumps are starting to go away, thank goodness, but there are further problems with the new medicine: it's not working.

The endometriosis pain is back full-force, and by my estimation, right now, I have about 20 minutes left of upright time before I have to lay down for a few hours again.


I don't think there's anything I hate more than medicines that take a while to work right. I know the new BCP is doing something to my hormones so I have to give it a chance to balance out, but it's so frustrating to live through its bull waiting for it to work. Like the Nexium, the Ear, Nose, & Throat doctor (Dr. A.) said it would take up to 6 weeks to see results.

6 weeks? 6 weeks. Great. Looking forward to it.


Luckily it's spring break this week, so it's not like I'm missing out on work because I'm sick this time.


Patience...patience...it took 15 years to get this way, it'll probably be another 15 to get back what I've lost.

It's funny, this whole situation is like a huge knot. A hundred threads all balled up, kinked and woven. Everything's so interconnected and layered you can't begin to work on one part before you've unwound the 12 before it.

I just need to be patient, and keep working on it...one day it'll be better.

Right?

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.