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.

Wednesday, November 9, 2011

Whale of a Wednesday Weigh-In! on Friday

I'm going to call Week 1 of The Great Weight-Loss Project a success!

If you're just tuning in, my dear friend (previously code-named "Lisa"), Tera, is getting married in about a year and I refuse to be this size when she does so.

Last week I was 198 pounds, and now, after only a week of dieting, I'm proud to say I'm down to...


Three pounds down!

Can't really tell, though... and I hate my forehead...I really need to do my bangs more often...

Anyway, that's going to have to be it for today, I've got a headache and Debra's coming over with Manny for dinner so I need to rest.

I can't wait to get all this medical stuff straightened out, really- this week has been horrible.

Hang in there, guys.

Saturday, November 5, 2011

Side Effects

I was serious about the upcoming posts in the last Saturday Summary, Speaking of Saturday Summary. I was. Still am, but this week has been wretched:

Monday I started a higher dosage of Lyrica: 200 mg twice a day, and I had a subbing job.

Tuesday I was pretty much dead to the world, I slept for most of the day, even somehow managing to answer my father when he told me that my mother was sick and needed to be taken care of because she had a high fever.

But I didn't find this out until much later.

My dad works from 4 until 8, so he came to my room around 3ish to tell me Mom was sick and I'd have to make dinner and whatnot. I don't remember this at all, but he said I answered him.

I woke up around 7:30 to discover my hands and feet, and nose were swollen to the point it was painful the way my skin was stretching to contain the whatever. I was scared, so I went downstairs to get my mother's opinion and found her laid out on the couch with two blankets, shivering. We were quite a pair.

Luckily, as I began to move around, getting food or whatever, it began to dissipate- but I left a message for Dr. S. anyway.

I was going to eat dinner in my room, so I left the phone next to my mother so she wouldn't have to get up to answer it. It rang, then, and it was my brother, Mick. My mother was reassuring him about something, and telling him that sometimes, at school, "these things happen." I knew then it had something to do with Manny, Mick's son, so I waited to find out what it was.

You would think that since the school got the news that Manny was diagnosed as autistic (1 in 110), and that his doctor recommended he have a full-time aide at school, that his teacher would keep an extra eye on him until the paperwork goes through.

Not the case.

When Debra brought Manny home from school she smelled something. She checked Manny out and found it: poop. On his hand. She asked him when he'd gone to the bathroom and he said snack time, which is 10 o'clock in the morning. He had poop on his hand all day.

I can't explain how upsetting this was. Yes, these things do sometimes happen, but in Manny's case there were three teachers in the room that know he needs special attention. If this could get through, what else could?

It's so scary, he's just a little boy. A little boy even more vulnerable than the average kindergartner. Regardless of his place on the autism spectrum, he's supposed to be safe at school. Yes, kids fall and break their arms on the playground, it happens, but this wasn't an injury.

It's been dealt with, though, and Manny's paperwork got an extra push through the system because of it.

Wednesday morning Dr. S.'s office called and told me to go back on the 150 mg dosage of Lyrica until my next appointment with him, which is at the end of this month-- which means yet another month of symptoms. Another month of this discomfort- the aches, the burning in my skin, the exhaustion...

I worked Thursday and Friday and have spent a grand total of 6 hours awake since I got home on Friday...well, plus 4 now, counting this morning. What am I going to do about getting a job? What if lightning strikes and I actually get a job before I see Dr. S. again?

My stomach is still killing me (Mystery Diagnosis and Other Medical Issues, Harry Potter and the Stomachache from Hell)...I just took a Vicodin so I need to wrap this post up before the tasty, tasty drugs start making me goofy. Dr. S. gave me the name of a new gynecologist, so I've got to make an appointment. Dr. S. said she's known for her laparoscopic skills, so we still might get a diagnosis of endometriosis. I'd be happy with any diagnosis, though, as long as the pain stops, with as few side effects as possible...I don't know if I can take any more.

Wednesday, November 2, 2011

First Wednesday Weigh-In!

Here it is, the first Wednesday Weigh-In!

And here it is, friends, our raw material:

Clearly, clearly, clearly, there is room for improvement.

Please don't make me into a meme.

And, as promised, feet on the scale:

So...there's that.

I'm using, and I made my profile public so friend me! I'm PJO428. I like SparkPeople because of its focus on the real basic units of weight: calories.

So, I'm excited to get started!