Mittelschmerz

3 03 2012

At first, this is one of those posts where you think, “Rilly?”  As in, “as if this could get any more fun.  Rilly?”  But, keep reading.  There’s an unexpected happy ending.

I have a big show coming up.  So, I’ve been, shall we say, tense.  And busy.  One day, I’m making a 3 foot by 4 foot papier macche mask (yes)., and I realize that I’m in pain.  Like, I really hurt.  One of the volunteers asks me if I’m okay, and I respond with a “Yes, I just take a medicine that makes me sore.”  Blaming the methotrexate.  Well, am I wrong?

A few nights later, I wake up in the middle of the night with a pain that can best be described as “Shit, why am I being stabbed in my stomache?”  My room is pitch black, my husband is snoring peacefully next to me.  But I can’t sleep.  “Well, this is just silly.  I can’t possibly have one more thing, so this is indigestion, and I’m just going to sit up a little while until it passes and then get back to bed.”

It did.  I did.  Good then.

Next day.  Lunch with my business partner, and I can’t walk.  I’m hobbling in pain.  We arrive at the Mexican restaurant that I chose (because I am that picky about my Mexican food.)  The smells are great, the music is great, the scene is cool-hip.  But, the only thing I see are the very stiff hard wooden chairs.  Crap.  Now I know that when I am distracted from truly delicious enchiladas verdes, I’m in real pain here.

So, I tell my business partner that i gotta get to an E.R.  I don’t have insurance, so this is my only option.  My mother takes me.  I know a great ER, and get in a private room within 30 minutes.  I explain that I’m on methotrexate, and was instructed by my doctor to not take aspirin, and that if i had any stomach pain to go to an emergency room.  I’m trying not to think “Liver Failure, Kidney failure.  This is it.” but also to convey the urgency of the situation.

They give me painkillers, which are great because as I said, I can’t even think of taking an aspirin or an ibuprofen.  The nurse practicioner orders some tests (for which I’m really grateful).   Eventually, I hear the results.  I have a burst ovarian cyst.

This is the “Rilly?” part.  I mean, at this point, I’m thinking of having a talk with God and asking, “Dude, are you kidding me?”

Of course I look up burst ovarian cyst on the Internet.  I won’t be doing that again.  That information is terrifying.  My whole family spends the evening in knots, worrying for me.  I of course am out like a light because, at this point, I’ve had several good and very effective pills.

The next day, we follow up with a woman who is now my gynecologist.  She walks in, and says with a thick German accent, “I love your hair.  Just like that.”  As if she’s known me for years.  Then and there, I knew we would get along.

“Listen.  This burst ovarian cyst, is not what you think it is.  It’s a burst follicle.  Very normal.  You’re just perimenopausal.”

What?

“You’re 43?  Have your periods been getting lighter or further apart?  Well, there you have it.  You’re perimenopausal.”

But, my hormone levels are normal.

“As if those tests tell you anything.  Did a doctor tell you that? Never trust doctors.” (okay, I made that part up for dramatic effect).

“You know you’re peri, when you know.  Do you feel awful?”

Why yes!

“lack of energy?”

Yes!

“Inability to concentrate?”

What? Yes!

“You’re perimenopausal.  Perimenopause in some women can signal the beginning of something we Germans call Mittelschmerz.  It literally means ‘middle pain’.  Because your ovulations are irregular now, it’s more likely for you to be in pain.  I’m one year ahead of you.  And the only reason, I’m not doubled over in pain is because I’m on the birth control pill.  So, let’s get you on the pill, eh?”

Well now.

As it turns out, perimenopause causes a bunch of other things….a psoriasis flare up among them.  Most women experience their most severe psoriasis flare up at the beginning of perimenopause.

And this brings me great comfort.  I’m not crazy.  I’m not harboring disease, or some strange autoimmune response to something I can’t define.  I’m just hormonal.

So now I understand everything.  And really, it’s good.  I’m ready to move on.

So thank you, the very few of you who listened to me when I was at my most frightened.  You really have given me a great gift of your time, and I appreciate that.

And join me on my other blog, the one for the next phase of my life:  Dramamama.  Running a theatre, raising a daughter, and living life in the in-between.

Take care





Yeah for clay!

11 02 2012

Today was a methotrexate day.  Ick.  And truthfully, it didn’t feel great.  But, it didn’t feel terrible either.  In fact, I’ve noticed that the last few times that I took methotrexate I was feeling better.  I attribute this to the clay…

But no, I’m not bathing in it.  I’m making mask molds out of it.  Here’s my other secret:

I actually own a production company.  And as such, I get to work on some pretty fun projects….a series of poetry readings, a series of housing fairs for low-income folks, and of course 10 foot puppets to be used in an outdooR performance.

I love the diversity of the things I get to do in one day.  I go from emailing a very important client to getting myself knee deep in paper mâché to teaching media ethics all in one day.  It works for nature, which I might describe as part genius and part “ooh sparkly….”

Anyway, this past week, I’ve been working with clay.  And it’s very therapeutic.  I love the feel of it, and the feeling of accomplishment that you get when you’re finishing a layer of stuff.  I love the particular point when the clay mold is almost done, and you can stepback to see your work.  I love the sloshy sounds it makes while you try to keep it from drying out, and I love that my dining room is ow taken over, rendered completelyuseless for any kind of eating–thanks to the three foot mask and 75 pounds of clay that sits atop the table.  

It is this beautiful obtrusive, “look at me” object, that demands to be noticed.

And I made it.  Yeah for clay.





Methotrexate Metaphors

3 02 2012

I’m trying to think of positive metaphors for methotrexate…things that might help me think positive thoughts about this treatment to get me through it.

My methrotexate is….

my comadre, who shows up unexpected on a Sunday afternoon to take my daughter to the museum while I put up her swing.

my overly anxious dog, rescued from the streets, who barks at the slightest thing to warn us about the skunk in the backyard.

my exhausted husband, who wakes up, does the dishes, does the laundry, feeds everyone, then heads out to work.

my officemates, who do all of the little extra things for me, from researching the newest liver cleanse to building a platform for a performance.  They are amazing.

My stressed out mother, who despite being on high alert, keeps a poker face, who asks not “is there anything I can do?,” but instead “What can I do?”

My daughter, who magically knows how to give me a hug, when to say that she will love me forever.

My methotrexate is my ally who will calm my immune system, rock it to sleep, set it right.

It is my translator.  It finds the ways to talk with my t-cells, negotiating with them to slow. down.

My methotrexate will allow me to pay back all of the blessings that I receive every day.





Coyolxauqui has a baby: A theory about conflict and psoriasis

1 02 2012

The other day, my business partner commented that she had read that psoriasis was a symptom of deep seated rage.  Ay, hijo!  That just sounds entirely unpalatable.  In fact, aside from the obvious venting that I do on this blog, my days are filled with “awesome”s and “that’s so cool”, and “thank youthankyouthankyou!”  My life is really a blessing. Very few women have the opportunities that I have.  A Ph.D., my own business, a child, a husband.  I’ve worked hard for them.  But, some women work hard and never get there.  So, how could I be enraged?  It sounds so…quite frankly, unfeminine.  And with my skin, I already have issues with the “f” word.

I do, of course, know that stress affects psoriasis and can cause flare ups.  Then, just as fate would have it, I saw the article on yahoo about how conflict leads to psoriasis outbreaks.  And a lack of support.  This phrase, “lack of support” got me thinking.

I’ve had psoriasis all my life.  But, the big breakout happened about 3 1/2 years ago more or less.  I had just gotten pregnant, and I was miserable.  No part of my body worked right.  I was terrified.  I hated the neighbors.  I felt very much alone.  Around then, my longtime cat was run over.  I was devastated and angry.  And I remember distinctly telling myself that I couldn’t cry, that it would endanger the baby, and that I could cry after all of this was over.  Well, afterwards, I did cry–plenty.  But still, I made a conscious decision to choose emotional numbness as a survival strategy.  And that strategy stuck.

After the first cat died, our other cat needed more reassurance.  She started sleeping at my head and kneading it during the night.  That’s when the psoriasis started.  For several years, I didn’t know what it was–just a strange hot spot that I couldn’t seem to get rid of. I blamed the cat.

Back to that phrase “lack of support”. While pregnant, I went out to dinner on New Year’s Eve.  Something seemed off during dinner, but I chose to ignore it, thinking that I had better learn to not be such a hypochondriac.  The pains became worse, and then spotting, and then more pains, more regularly.  We called the nurse, who insisted that we go to the ER immediately.  As it turns out, I was having contractions, and my daughter was not at a viable stage.  I had 4 solid days of contractions, every 4-5 minutes.  No drug would work to stop them.  Finally, I tried acupuncture.  The acupuncturist, who was my friend as well, chose to just have a conversation with me.  And she started by asking me about how I felt in terms of the support that I was getting.  I gave her the patented answer that things were fine.  They were not fine.

We talked more and found the problem.  Basically, my identity prior to getting pregnant was that of tireless advocate, woman warrior.  In fact, in my dissertation, I refer (almost constantly upon a re-read of it) to the Aztec Goddess of the Moon:  Coyolxauqui.

Coyo is great.  The incredibly short and oversimplified version of her is that she was such a peacenik that before she was born, she knew that her twin brother Quetzalcoatl, the God of the Sun, was going to be a God of war, and that he would bring war to the Aztecs.  So, she tried to abort all of her mother’s children while still in the womb by stabbing and killing her mother.  Unfortunately for her, Quetzalcoatl survived, and beheaded her.  But, her face was so pure in its intention that it rose to become the moon.  Coyo is known for her protective qualities, for her ability to shed light on difficult subjects, for her guidance during difficult times. Yes, it is interesting that a woman who tried to kill her mother is seen as pure of intention.

Now, I don’t know why, but I related to Coyolxauqui during the last phases of my dissertation.  She was a warrior, a goddess, and even better, she was a martyr!  This identity stuck.  But, when I got pregnant, my role model of a mother-killing beheaded woman warrior obviously became problematic.  Suddenly, I wasn’t the woman warrior.  I was about to be the mother.  And we know what happened to her! To add to this, my daughter had a different blood type than me.  Any scratch in my placenta could mean big trouble.  And really, wasn’t this a lot of gore?

Further, being a protector isn’t the same thing as being a nurturer.  A protector is there to make sure you don’t get into trouble.  A nurturer ensures that you flourish.

So, she gave me the assignment to create an identity for me during my pregnancy that would be more about nurturing, growing, etc.  Honestly, I don’t know that I have that part down.  But, immediately upon leaving her office, I noticed that my contractions had stopped.

What does all of this have to do with psoriasis?

Well, to me it seems like hearing my business partner speak, and reading these articles gave me the epiphany of the obvious.  the Ph.Duh moment.  My business partner was right:  psoriasis is caused by rage.  Conflict.  Stress. When i changed my identity, I must have altered how my body processes itself on a cellular level.  And this change was needed.  Healthy, both for me and my daughter. It was in fact, critical.

But, my body resists.  It’s as if my body is my second cat, waiting until I sleep at night to seek reassurance, kneading hopelessly asking for her fellow cat.  It is Coyolxauqui, immature and awkwardly trying to save humanity, and losing sight of her own humanity in the process.

My job now is to nurture my body, to reassure it that it is not under attack, that humanity will be fine, that there are no O Positive bloodcells anywhere near that can hurt it. Shhhh, shhhh, shhhh.





The Methotrexate days

30 01 2012

I remember practicing my “teacher voice.”  I was going to speak to my doctor…doctor to doctor.  I would be firm.  I would be insistent.  I would get immediate treatment–a shot, a pill, anything–to get this thing under control.

My doctor is a very kind man.  Very patient.  Almost sociopathically so.  He let me finish all of what I had to say.  He smiled.  And then he agreed.  “It sounds like you’re ready for biologics.”  I assumed this was a pill.  My situation turned out to be a little complex.  I couldn’t take the first two recommended drugs, so he recommended, firmly, methotrexate.

Fine, I said.  Equally firmly.  and we both seemed happy with that outcome.  Shortly afterwards, I figured out that methotrexate is that mild form of chemotherapy, used to treat among other things, cancer.  The “C” word.  I’m sure he actually said this.  In fact, I know he did.  I just don’t remember hearing or understanding that.

Swoosh.  My head went into a swirl, and I was pretty much no good for anyone after that.  Now, I have to admit that when it comes to being a hypochondriac, I’m right up there.  Unfortunately, I’m also one of those people who just get sick a lot.  If there’s a rare blood rash, or a series of inexplicable symptoms, you can bet I’ve got ’em.  And you can also bet that after about 20 tests, a very relieved doctor has found the source to be some rare blood anemia or some such.

So, when my doctor said things like “liver failure”, “kidney failure”, etc.  I pretty much presumed that this would be my fate.  Add to this that everyone, and I mean everyone in my family has had some sort of cancer.  So, I’ve seen a lot of chemo.  And you can image how unsettled I was.

I’m lucky.  God has given me exactly who I need.  And it has never been so true as in these past few weeks.  My husband (big surprise) is a cancer survivor.  And he’s taken methotrexate.  He knew what my symptoms would be, and stocked up on what we might need–and I might add, he did so without telling me, so as not to frighten me even more.

And then there’s my business partner.  She refuses, I mean refuses to let me have my pity parties.  “You don’t have time to go there.  All of your energy needs to be thinking positive.  You don’t have cancer.”  She’s right.  I don’t.

So, I’ve made it through the first week of methotrexate.  I’m on a low dose, so the side effects aren’t so bad.  Not bad at all.  If I eat a normal sized meal, forget about it.  It comes straight up and I’m ruined for the rest of the day.  I get cold.  My bones and muscles ache.  I get headaches.  The weirdest thing:  my breasts tingle, like they did back when I was nursing.  I think it makes me cranky, but that also might just be my personality (!)

But, if I drink lots of water, eat in small amounts throughout the day, and just pace myself, I’m okay.

I’m going to be okay.





Do over: A Manifesto for Writing about Women

26 01 2012

I don’t know.  Maybe I’ve had a mocha.  Maybe, it’s the incredible high I got when I found out that two human beings actually read my blog. (that is sooo cool!).  But, I’m not feeling anything like the sum of my silver skin right  now.

I teach college…well, I’m adjunct.  But, I love my students.  They’re great.  They energize and motivate me, they teach me to be a better writer, to be a braver writer.

Tonight we talked about a great documentary, Miss Representation, which if you haven’t seen, you must.  The documentary touches on the subject of body image and women in the media.  And, oh the injustice.  But, it’s not just the ridiculous images of women that came up.  It’s also the men, and the effect that this has on them.  Anyway you look at it, the images of women in the media have messed us all up pretty good.

But tonight was a night about strategy.  After showing the trailer for the movie (which you can see at missrepresentation.org), I turned on the lights in the classroom and asked the students to look at themselves, and at each other.  The majority were women!  So, we got to work on how to counter these negative images.  How to create (not positive, not even realistic, just) more diverse and interesting ones.

We decided the following:

Where there is stereotype, we will 1)refuse to go into the binary of good/bad, and choose instead to look into the gray matter.  2)  instead of clustering similar behaviors to entire groups of people, we will look at the individual by highlighting “the beautiful incongruity of me!”  That is, celebrating those crazy qualities that act in direct contradiction to each other, the things that we all have, that make us unique and wonderful.

Where there is archetype, we will expand our discourse.  We’re not going to assign cliched characteristics to the “bitch”…we’re going to make her more interesting than ever.

In terms of power, we’re going to add power, keep those hard earned titles of “Dr.” “Senator”, “Madame Chair”, and “Madame President”. and remove words that make women seem overly emotional.  And while we’re at it, we’re going to explore power and femininity…why not?

In terms of community, we’re going to change our perspective, consider that backstory.  We’ll refuse to participate in what the American Psychiatric Association calls the “psychological annihilation” of women, telling them that unless they’re the Kim Kardashian, they are not here, they must isolate themselves.  Instead, we will heal our communities, by insisting that women–all women–are here, are not alone, and don’t need to be alone.

In terms of the relationships we portray, we’re not taking the easy way out.  We’re going to mix it up, detour off the beaten path, switch roles, bend gender.  End the end, we won’t rest until men have the rights to their emotions, their dignity, their connection to their children.

Instead of violence against women, we’re going to explore tropes of understanding, solidarity, resilience.

But, isn’t that just good writing?

We ended the night with looking at some heartwarming youtube animal videos…So, I’m feeling great.  And on that, I’ll say goodnight.





And other unfortunate places

25 01 2012

Let’s face it.  Most people don’t get the whole psoriasis thing until you explain the “and other unfortunate places” clause.

“sure, it’s bad dandruff, but that’s no big deal.

“It’s just a rash.  Try not to scratch it.”

They don’t get the connection to cancer, the fact that it’s an  autoimmune disorder that makes you vulnerable to infection, the whole stress management issues.  Nope.  But, if you ever need to make it clear the true affect psoriasis has on your life, just explain the “other unfortunate places” concept.

The notion that you do, regularly, get blood on your toilet paper from your anus–and not from anything you ate or otherwise chose to do.  The fact that sometimes you wonder what that rotting flesh smell is, and then you realize that it’s coming from your belly button.  And yes, even there, down in your “mommy daddy parts” it’s there, creeping it’s way towards your clitoris and scaring you everdaytime you think about it.

That’s guaranteed to get a face.

That’s guaranteed to make people understand that this affects every single decision I make.

I wear light colored clothing, not because I like it, but because I don’t like looking down only to find that my shoulders, my desk, the floor around me are covered in a light dusting of…well, me.

And yes, it does hurt.  Every time I sit down.

And no, my husband hasn’t touched me.  And I wouldn’t want him to.

And yes, if it creeps any further into my ear, I think I might lose my hearing.

Hairdressers have refused to cut my hair, even though I tell them it’s not contagious.

Doctors refuse to touch me without gloves, even though they know it’s not contagious.

And no, I can’t get life insurance right now.  I can’t pass the drug test.

It is related to cancer.  Nobody knows why, but they think it’s the drugs that you take to manage it.  But not managing it means that you could get all kinds of infections, and just plain sick, and itchy.

I feel like nobody hears me.  Nobody understands.  And yet, I also feel like I wouldn’t want them to.  Good grief, this is just a rash.  It’s not cancer.  and I don’t want people to know me only in terms of this.

I am accomplished, smart, funny,  actually quite pretty, and for the most part, a very happy blessed person with lots to be grateful for.

But on certain days, I just feel like I’m made up those unfortunate places.