herveryown

Like Riding A Bicycle In Hell

My body has a funny sense of humor.  Not funny ha ha, just...peculiar.

When I got my period after going so long without, I was struck by how embarrassingly rusty I was at the mechanics of the procedure.  Everything felt strange and yet vaguely familiar, like going home after a long absence.  Okay, it'd be like going home if you grew up in Norman Bates' basement.

With every un/familiar pain or twinge, I was reminded of how long it had been since I did this.  It had been months.  Eight months.  Why, it was almost as long as if I'd...been...  Hmm.

Well played, Vicuna, well played.  You somehow managed to grace me with a Katrina style period ("George Bush doesn't care about women") the week of Better Embryo's due date. 

After a good hearty laugh, I returned to the issue at hand and attempted to reclaim some lost talents.  It's not like you need a degree to menstruate, but the following basic skills are extremely beneficial:

1. The ability to choose clothing that effectively masks the unmistakable fantail of an Abundante Flow Maxipad. 
2. A basic grasp of Menstrual Math, the system that allows you to accurately calculate your tampon requirements for a given work day so that you don't end up either empty handed in the lav halfway through your shift or scrounging in your purse for loose change while you make an emergency run to the nearest drug store.
3. The gifts of subtlety and grace, necessary for excusing yourself after you've realized that your Feminine Protection is doing a suck ass job at protecting your femininity, to say nothing of your dignity or your pants.

I'm pretty sure I failed the last one when I yelled "Holy shit, I gotta go!  I think my Always just turned into a Sometimes!"

Man, I suck at this.

Vicuna Complex

Although I don't believe it does a bit of good, I do try to maintain a good relationship with my body.  I dump in healthy food at regular intervals.  I use complex mental spreadsheets to track which medications can be taken when and with what.  I even allow my body near complete autonomy when it comes fur issues, which I think is awfully big of me in light of the PCOS, don't you?

Try as I might, however, I find that it is almost impossible to have a peaceful relationship with the area commonly (and in my case, quite ironically) known as The Reproductive System.  Unable to call it 'reproductive' with a straight face, I tend more towards terms like 'The General Uterine/Cooteral Neighborhood' or 'The Vicuna Complex,' as if it is an expensive, if slightly run down, office building.  No matter what I call it, though, I can't help but resent the damned thing.  I've spent thousands of dollars on tampons and chocolate, to say nothing of the multiple mortgage payments we've made for Dr. BrightEyes, and still it won't cooperate.  If I want it to bleed, it won't.  If nobody wants it to bleed, it does.  Fucker.

Anyway, I think I'm going to try to turn over a new leaf (flippyflap?) regarding my Vicuna, and I'm not just saying that because sixteen different stars aligned recently and I ovulated and got my period for the first time since July.

Dear Vicuna,

In an effort to improve diplomatic relations between us, I am prepared to offer a treaty under the following terms:

1. I will never buy cardboard applicator tampons again. 
2. I will stay on progesterone-only birth control pills constantly, since that clearly makes you very very happy.
3. I will keep Drs. DuJour and Pinto, with their stubborn stickshift vagina-side manner, the hell away from you.
4. I will trot you out to the finest REs money can buy.
5. I will never wear bright blue spandex leggings with khaki shorts and weird running shoes.  I realize this doesn't benefit you directly, but trust me, it keeps your property values up.

In return, you will

1. Get pregnant.
2. Stop miscarrying.
3. See above.

If these terms are acceptable, please signify your agreement by causing me a fairly unreasonable level of pain during this period, complete with obnoxious referred shoulder pain. 

Thank you.

The Hunchback of Notre Damn, That Hurt!

I feel so advanced, but not in a good way.  According to Dr. Google, I shouldn't be experiencing round ligament pain until at least the second trimester, but here I am, yelling "GoddamnSonovaBitch!" and clutching my general chacha area when I get up from a sitting position.  So far, the only thing I can figure out to do is to get up very slowly, walk hunched over for several steps, and then gradually straighten up.  It seems to help a bit, although it looks incredibly stupid when I'm doing it.

(I'm totally lying when I say) I'm not really worried about it, of course, because I know exactly why it is happening.  Every time I review my laparoscopy report, I'm glad I did, but I wish I hadn't.  Apparently I have Endometriosis on (among other things) my uterosacral ligaments.  My best guess is that the endometrial lesions will continue to be irritated (read: painful as fuck) as the ligaments stretch and whatnot. 

I'm trying to be zen about it, because there's really not a damned thing I can do about it, and like I said previously, I just don't care what I have to feel, as long as it means GE's still in there, but I am literally losing sleep over this, because it hurts when I lay in certain positions, and sometimes the pain causes uterine contractions (also painful), and that just seems bad.

I guess we'll know more after Dr. BrightEyes wands me on Wednesday.

Lupron: Revenge Of The Side Effect

Now I remember why I hate Lupron so much.

This sucks.

The first time I went on Lupron (Episode One: A New Nightmare) was in 2002. I did Depo Lupron shots once a month for six months to go into pretend menopause following my laparoscopy.  This was supposed to have some meaningful impact on the Endometriosis that had just been diagnosed.  Whether or not it actually helped, well, I guess we'll never really know.

It did put me into the Emergency Room once with an absolutely blinding migraine, which was pretty funny in that the doctor on call told me that my migraine was caused by 'my menstrual cycle,' and after I repeatedly explained to him that I didn't currently have a 'menstrual cycle' because I was in 'chemically induced menopause,' he blew me off and shot me full of morphine.  I think that the morphine was the high point of the treatment.  The low point was when I started having ideopathic chest pains and my employer almost called 911.

Just for fun, let's compare the difference between using Lupron to treat Endometriosis and using Lupron to treat the infertility caused by Endometriosis, shall we?

Treating Endometriosis:

• Six IM injections administered by a really nice nurse who rubbed my butt after each injection.
• Total cost of Lupron: $90 for six office co-pays.
• Side effects: Hellacious, but copiously treated with progesterone, Imitrex, Lithium, antidepressants, and extra drugs to treat the side effects of those drugs, just for good measure.

Treating infertility caused by Endometriosis:

• A whole bunch of SQ injections administered by yours truly.  One injection actually administered while reading SIL's IMs about how lucky I am not to have children underfoot.  Ha.  Ha.  Ha.
• Total cost of Lupron: $199 for one teensy little vial of Leuprolide Acetate which makes me wonder 'Acetate?  What, like a cheap blouse?  Why not Rayon, or a nice Cotton/Poly blend?'
• Side Effects: Well, so far I have lost my fucking mind, and the drugs I need to find it are strictly off limits.

When I say I have lost my fucking mind, I'm not using hyperbole or trying to be funny or cute. 

As previously mentioned, I am Manic Depressive (or more specifically, BiPolar Type II) and I've gone into a hypomanic state, something I virtually never do unless I am being prompted by sleep deprivation, drug interactions, extreme stress, or, well, Lupron.  I've been searching for some nifty explanation of hypomania online for your clicking pleasure, but unfortunately, none of them really apply to me.  Most of them describe feelings of euphoria, high self esteem, and hypersexuality.

God, I fucking wish.

Here's what hypomanic episodes do to me:  I have a hard time sleeping, and have a greatly reduced need for sleep.  I can't concentrate.  I can't focus.  I can't relax.  I worry constantly.  I clench my teeth a lot, which hurts.  I am extremely distractible.  I am irritable to a truly alarming degree.  I am agitated and restless. I talk very fast, and am constantly concerned about saying inappropriate things because my internal filter is pretty much gone.  Conversely, I frequently get very quiet because I feel incredibly self conscious, especially around the people who know I'm Manic Depressive, because I feel like they're expecting me to do something entertaining or fun, like go on a shopping spree or dance around in my underwear or any of the stereotypical things that all us crazy people are supposed to do.  I pick stupid arguments. I am frequently all but paralyzed by the anxiety level I am experiencing. 

It's kind of like the way you feel when that semi almost sideswipes you on the freeway and you swerve out of harm's way at the last minute and spend the next ten minutes shaking and hyperventilating, except that it's multiplied by about twelve and it won't go away.

Have I mentioned how much this sucks?

I know that this feeling isn't real, that it is being caused by artificially manipulated hormones and faulty brain chemistry.  I know that it is temporary.  I know that I can get through this.  The problem is that knowing all this doesn't actually make it any less unpleasant.

I find it extremely embarrassing to be posting about any of this.  Being crazy is the social equivalent of farting in church: embarrassing, awkward, and nobody really knows what to say, but odds are, somebody will laugh.

Oh, well. 

I'm sure I'll be depressed again in no time, which is much easier to deal with.  In my world, this is what passes for optimism.

The Ethics of Pain

I am having a bad week.

If I were a sweet, socially polite little girl, I would sigh prettily, grouse briefly about my life and then apologize profusely for my unacceptable negative emotions.  I might even giggle.

Fuck that shit. 

I am having a bad week.  It's the kind of week where every day shovels out the basement of 'rock bottom' and then pushes you down the resulting hole.  It's the kind of week which would just be SO much more bearable if I were medicated, but I'm not, so here I am.

A question keeps coming up in my everyday life, and I swear to God, the next person to ask me this is going to receive The Full Wrath Of Akeeyu.

People keep asking me why we're moving on to IVF so quickly.  Why we're not trying naturally longer.  Why we don't want to try what worked for them, their cousin, their friend's sister's mother's college roommate that one time.

I have lost my patience with this line of questions.  The fun part is that I'm not just getting it from friends who should know better.  I also got it from Dr. DebateTeam (an OB/GYN) who should really know better.  I can't even begin to formulate an answer to this without employing the work "fuck" in one of its many forms.

Let's review: I have Endometriosis.  Untreated Endometriosis spreads and destroys internal organs (many of which I happen to be personally attached to, several of which are essential for life).  Trying to get pregnant requires Endometriosis treatment to be discontinued.

I am tired of being told I should try 'naturally.' 

I get (I absolutely totally 100% get) that when people encourage me to keep trying naturally, or try pineapple or singing the Mickey Mouse song backwards or whatever, that they're trying to be supportive.

I assume that they're trying to encourage me to "keep trying" because conceiving naturally is the best possible option in their opinion, or maybe the only morally acceptable one.

Guess what?  That fucking ship has sailed.  The S.S. Natural left port quite a while ago, and I wasn't on its passenger list.  There is nothing particularly 'natural' about having Endometriosis.  There's certainly nothing natural about its treatment.  There is nothing natural about having your internal organs cemented together and destroyed, one by one. Nothing.

So, for the next person who tells me to try naturally, here's what you're actually saying to me:

"I think you should be in more pain, and for much longer.  I think that Sam should have to watch his wife's health deteriorate much further.  I think being a silent witness to your wife's pain sounds like a fun way to spend the day your life.  I think you should wait until you're in pain every single day, like you were before when life was unbearable.  I think your body should be completely destroyed by the Endometriosis.  I think that losing an ovary or a fallopian tube to an untreated disease doesn't really sound too bad (as long as it's happening to you and not me, that is).  I think you should wait until you're completely incapacitated by the disease, and then do IVF.  I don't think you should 'give up' and try IVF until you're ready to collapse, both physically and emotionally.  I think you should wait until your odds are significantly worse than they are now. 

"I think you should be in much more pain."

Well, I don't. 

I'm not giving up.  I'm moving forward.

Laparassvice

I have had a few occasions to advise women who were about to have Laparoscopies, and I've decided to compile Akeeyu's Handy Dandy Laparassvice into one convenient post.

Prep Your Nest Beforehand

Shop for your favorite "I'm sick, pamper me!" foods. Plan your post-surgery day and/or week. Stock up on good movies, tape your favorite shows, put the PlayStation by your bed, dig up those books you've been meaning to read, buy fresh yarn and Google a new knitting pattern.  Put your cell phone charger next to the bed.  Get a bell to ring, as yelling tugs on abdominal muscles. Clean out a trashcan as a barf bucket.  Just in case. Find big pants and/or overalls, and lay in a supply of great big loose grannypanties.

Talk Talk

Talk to your doctor about what you do and don't want out of surgery.  Make sure that your doctor knows that fertility is your chief concern, if it is.  If you're more concerned about pain relief and quality of life, make that clear, too.  Some doctors will give you a shot of Lupron before you wake up, without even asking your consent.  Some doctors shouldn't still be in practice.  Be sure to discuss your doctor's plans for your body before they knock you out and you can't talk back. 

Make sure that the person who accompanies you to the hospital feels comfortable saying "NO, you may NOT do a fucking hysterectomy--I don't care WHAT it looks like in there."

Parting Gifts

Make sure you ask for pictures or videotape of your surgery. Somewhere, I have pictures of my endometrial implants and my ovaries, and the laserwork my doctor did on them, and it always makes me feel better.  If your doctor is completely unwilling to provide you with pictures or video...um...that's a little scary.  Doctors should feel confident enough about their surgical skill that documenting the results shouldn't be an issue.  When you go for second and third opinions, those pictures will be very helpful.

Make Everybody's Life Easier

Before your surgery, type up a list of all conditions and medications (and strengths and amounts and dosing times) and take it with you.  The admit nurse, the regular nurse, the anesthesiologist, and the janitor are all going to ask you about these things over and over, and it's easier than repeating it ad nauseum.

Post-Op Meds

Make sure your doctor prescribes these BEFORE your surgery, not after--you don't need to be dashing out to Walgreens after surgery.  As soon as you get your post-op meds, draw up a chart showing which
ones you're supposed to take and how often.  This will help anyone
tending you, but also be VERY helpful when you're doped to the gills
on Vicodin and can't remember what the hell you've taken that day.
Trust me on this.  If your doctor tells you to take pain medication
on a schedule for the first few days, whether you're in pain or not,
trust her on this. 

The Party.  Wait, Party? 

If you're a social person, plan a little low-key get together the evening of the surgery.  If the news is good, you may want to celebrate.  If the news is bad, you may need to commiserate with supportive friends.  I planned mine like an event.  My mom picked up Chinese takeout, a couple people came over, and I got to show off my nifty new scars.  Woohoo.

Party, My Ass

If you're not a social person, hey, there's still Chinese takeout.  Just plan something that you can look forward to on the evening after your surgery.

Some Tricks Are Not Just For Kids

See if the hospital cares if you show up in your pajamas. At my pre-op
appointment, I read on the care sheet that 'small children may arrive in
their pajamas.'  Screw that.  "Can I arrive in my pajamas?"  They looked at me like I had eight heads and said "I guess..."  So I did. I showed up in my favorite slippers, pajamas, and a velvet robe.  I also brought my favorite teddybear (dressed in scrubs, available at Build-A-Bear) and my favorite blanket.  Why should kids get all the comfort?  Do whatever it takes to make your hospital experience more relaxing.

Panic Time

For me, the scariest part was walking into the operating room.  I almost turned around and walked right back out.  I probably would have, except that the nurse was holding on to my IV bag like a leash.  She turned and looked at my stricken face and said "Oh, honey, this is the part where everybody freaks out a little," which made me feel better, so just in case your nurse doesn't tell you that, apparently that's the part where everybody freaks out a little.  It's okay.

Oh My God, I Look Like a Tool!

Either shave your legs or don't.  DON'T be like me and only shave one and then look down right before they knock you out and notice that one of your legs is sleek and smooth and the other is Bigfoot furry and realize that not only are you about to be unconscious in an extremely compromising position in a room full of strangers, you'll going to look like a total dork!

Insert Keanu-style 'Whoa' Here

Anesthesia is really cool.  The last thing I remember was the ceiling starting to ripple.  Before surgery, I was so afraid that I wouldn't fall asleep, or that I would feel part of the operation.  Pshaw.  They asked me to count backwards from 100?  I think I got to 98.  Maybe.

Proxy

Bring someone with you that the doctor can talk to.  The doctor will probably have other surgeries or appointments after you and may pull a Casper before you're awake and alert, so you want someone around to get the immediate news, rather than waiting around for the biopsy and the post-op appointment.  Make sure your doctor knows that this person is authorized to hear the down and dirty about your dirty bits.

Don't Be Too Brave

After surgery, tell the staff exactly how much it hurts if it does. It's their job to help you out with that.  They should keep you long enough to make sure you can eat, pee, and keep medication down.

What The Hell?

If you wake up with purple genitalia, apparently that's normal. Something to do with whatever they hose you down with as a disinfectant.  If you don't wake up with purple genitalia...Ohmigod, I was totally fucking lied to!  What the hell were they doing down there,
fingerpainting??

Music Soothes The Savage Laparoscopy Incisions

A couple of weeks before my surgery, I had Sam burn a CD with a sampler of songs that I found relaxing or relevant.  The second I was out of recovery, my mom gave me my teddy bear, tucked my favorite
blanket around me, and popped my CD earbuds into my ears.  That
relieved the pain way better than drugs.  Apparently, studies have been done that prove soothing music and imagery help pain after surgery, blah blah blah.

Pillow Talk

Bring a soft, fluffy pillow with you.  The pillows at hospitals suck, but more importantly, if you have a soft fluffy pillow to clutch to your abdomen on the drive home, it will go so much better.  An unsupported, recently sliced-n-diced abdomen will feel every last fucking pothole and swerve.

There Is No Crying In Recovery

When you hit that point when you realize that you have Endometriosis (or PCOS or fibroids or whatever they did the laparoscopy to diagnose and/or treat) and you're tired and hungry and need to pee but you
can't get out of bed because it hurts too much, and you don't want to
ring that bell next to your bed because you feel so horribly pathetic,
DO NOT start crying. 

No, I mean it.  Weep softly if you must, but don't start with the deep, wracking sobs, because it will make your recently cut abdominal muscles contract and it will hurt So. Goddamned. Much.  And then you will feel even worse and cry harder, and eventually you'll be inconsolable, screaming "OW!  OW!  OW!" So don't.

My What Is Going To Hurt?

The shoulder pain is normal.  It's a type of referred pain.  If memory serves, it has to do with the gases they use to inflate your abdomen during surgery and subsequent irritation of the phrenic nerve.

Doctor, It Hurts When I Pee

If you're prone to bladder infections, you may want to let your doctor know this so she can prescribe an antibiotic for afterwards. They catheterized me while I was out, and I got a lovely bladder infection, which is apparently one of the most common side effects of catheterization during surgery.  Yay.

Take It Easy

Do not push it after surgery.  Whatever your doctor says about not straining yourself and not lifting heavy things, do that and then some.  Lifting heavy things is one of those magical ways to get adhesions, and you don't want adhesions.

Go Back And Read That Again

You do not want adhesions.  When you're out and about for the first
time, you may be tempted to lift that big package of cat litter.  Don't.  Ask for help, even though it takes five minutes to find a surly stockperson and you feel stupid because you look perfectly normal.  Looking like a big pussy is a small price to pay for not having adhesions.  Also, however big of a pussy you may look, it will be nothing as compared to me.  For example, I asked people to open drawers for me at work for about a week after I went back.  Drawers.  Okay, sure, these were yard-long, twenty pound drawers, easy, but I still looked like the biggest pussy ever (bring on the freaky Google hits).

Bald Faced Lies

If your doctor says "We got it all, don't worry, it won't come back," she's lying.  There is no such thing as 'getting it all.'  They may get everything that they can find, but even the best surgeons will admit that surgery is not a cure for Endometriosis.  I'm not mentioning this to be discouraging or depressing, but only because when I used to hang out on an Endo board, lots of women told me "But my doctor said he got it all, and now that my symptoms are coming back, he won't listen to me anymore.  He says it's all in my head."  Argh.

Time For A New Doctor

If a doctor ever says "There is nothing more that can be done for
you," what he's really saying is "I'm not a good enough doctor to
treat you," and you should go elsewhere.

The Post-Op Appointment

Type up a list of questions.  Make sure your doctor answers all of your questions, even if she's in a hurry.  It's important.

The Aftermath

There are four stages of Endometriosis.  If you're at stage 4, DO NOT GIVE UP.  Some new research shows that for some women, it is actually EASIER to conceive in the later stages than in the earlier stages, because there is less active inflammation.  If you're at an stage 1, don't take this to mean that stages 2, 3, and 4 are going to be exponentially worse/more painful.  This is not always the case. Frequently, the endo destroys the nerves that cause pain as it grows. This may be the only useful thing it ever does.

Read Up and Educate Yourself

...But do it in small bites.  I used to research endo for eight hours at a time, and then cry for days.  What the fuck was I thinking?  It's a depressing disease! Sure, read and surf, but then take a break!  Have a brownie!  Hell, have the whole pan of brownies!

But Not Soy Brownies

In general, avoid soy.  It has phytoestrogens, and the last thing an EndoTeer needs is more estrogen coursing through her system, stimulating the Endometrial implants.  Also, Dude, soy brownies?

One Size Does Not Fit All

You may find that some aspects of surgery are not as bad as you were expecting.  Some may be a little worse.  Plan for the worst, hope for the best, and give yourself plenty of time to heal.  This surgery, although very safe and routine, can be hard on your body and mind.  You may need some time to get over it.  Be patient.  It's okay.

Be Kind To Yourself

Treat yourself as if you are a person in your care, a person you care for very deeply.  Make sure you're getting enough sleep, enough to eat, enough comfort.

Now That It's Over

Log on and tell us how well your surgery went.  Don't you know that the entire Internet has been worried sick about you??

Paying

Akeeyu: "I just don't understand this.  You saw those pictures.  It's not a possibility, it's an eventuality.  That will happen to me.  The Endometriosis is going to eat me alive, one organ at a time, and nobody can stop it."

Sam: "Honey..."

Akeeyu: "Why can't they stop it?  Why can't anybody do anything?  Why aren't they trying?  I don't understand.  It's covered by insurance, it's all covered.  There is money for this.  The insurance companies will pay for a goddamned cure, so why isn't anybody coming up with one?"

Sam did not have an answer. 

Dr. Google did, however.

The answer is that the drug companies will roll out new treatments when the patents on their old ones expire (take note of the chilling paragraph that follows "Scope of this report").

Oh, and while we're on the subject, this is pissing me off.  Why are they calling this a new drug?  It smells suspiciously like a slight reformulation, repackaging, and re-patenting (read: cashing in on) an old drug.  And it's not a treatment for pain!  Heavy motherfucking narcotics.  THOSE are a treatment for pain.  This is just the same old shit that they've been foisting on us for years: temporary chemical menopause.

It's not good enough.  It's not a cure.  If I have to take it for the rest of my life (after they tested it for two whole years), if it doesn't eradicate the endometriosis, if it doesn't solve the problem, if it doesn't allow me to get pregnant (or even try), it's not a valid cure for Endometriosis.  It's a bandaid solution for a shotgun blast problem.

I am holding out for a cure. 

Oozy, Wincy, Whiny, Weepy, Sleepy, Dopey, and Itchy

Ugh. I'm bleeding like a pig on Coumadin, the pain is radiating further up my abdomen than ever before, and I just spent the whole day at work alternating between struggling to concentrate and struggling not to cry. Neither attempt was successful.

Plus, I had the thrilling experience of changing a tampon in a public bathroom and having blood actually shoot out of my cooter upon uncorking, as if there were a maniac with a supersoaker hiding up my business. My pants were not amused, nor was the upholstery of Sam's car.

The Norco's not really working, but it is making me amazingly itchy.

This is why my life will never be a Disney movie.

Original Comments

Okay, Fine, It's March

Disclaimer: If you have Endometriosis, I am truly sorry. If you have Endometriosis and are still filled with hope and optimism, I suggest you run. Save yourself. Do not, under any circumstances, read the following. It will not improve your day any.

Are all the optimists (bless their misguided little hearts) gone yet?
Okay.

I'm just going to add March to the list of things I'm in denial about:

1. The amount of pain I am in on a daily basis
2. The glaring inadequacy of my current doctors
3. The number of miscarriages I'm likely to have
4. The size (and city hall approved expansion plans) of my ass
5. The fact that March is Endometriosis Awareness Month

Why am I in denial about that? Because it's depressing. Also, it's pretty much a joke. Were YOU aware of it? I mean, surely you saw the huge government ad campaign that was being shouted from the rooftops? You saw the weeklong special report on The Endometriosis Crisis on Nightline? You bought some of the new Endometriosis Fundraising postage stamps? Your doctor added questions about Endometriosis to your annual physical? You saw the new official spokeswoman/posterchild for Endometriosis in the paper?

No? Yeah, me neither, because none of those things happened.

You know who the designated celebrities with Endometriosis are? Daisy Fuentes and Baby Spice. Man, we got robbed. Other causes get decent celebrities, like Michael J. Fox, Betty Ford, Superman, for chrissake. We get...two washed up has-bimbos? Fabulous.

I have learned two important things about Endometriosis, which I will now pass along to the world:

1: Education and persistance are the keys to getting diagnosed. Okay, mostly I mean the education of your doctor, and you're going to have to do it your damned self, but that's the only way you're going to get diagnosed.

2: Ignorance and the abandonment of all hope are the keys to living with it. Yeah, you heard me. Stop reading those goddamned articles that promise new and exciting research. At the end of the day, you'll get your hopes up over a cure that if it pans out(and that's a massive if), won't be available until after you go into menopause, sounds implausible anyway (case in point, Endostatin), and is probably worse than the disease (the numerous chemotherapy drugs being researched for Endo treatment come to mind).

The World: "Wow, Akeeyu, you have a really shitty attitude."
Akeeyu: "Why yes, The World, I do, but it's okay. I find it coordinates nicely with my really shitty disease. I'm not entirely sure how it goes with these shoes, though."
The World: "Do you wear those shoes out of the house?"
Akeeyu: "Yes."
The World: "Really?"
Akeeyu:
The World: "What? I'm just trying to be helpful."

In honor of Endometriosis Awareness Month, I am going through my semi-annual research and depression cycle, where I look up new information and treatment options and then get massively discouraged, because none of them pass the laugh test.

This year's pet peeve: Anticancer drugs. Okay, seriously, what the fuck? These are nasty, nasty motherfucking drugs. These are drugs that are not intended for long term use. They're supposed to either cure you or kill you. Endometriosis is chronic and incurable, therefore pumping Endometriosally Gifted Individuals with toxic chemotherapy drugs for thirty to forty years seems like, um, kind of a bad idea. Also, chemotherapy drugs are one of those classes of drugs that they really really REALLY don't want you to get pregnant while on, so they're kind of failing to address all the issues.

This year's runner up pet peeve, (which is available to assume the duties of this year's current pet peeve if, for any reason, it fails to thoroughly piss me off): This entire article, which is so full of typos, misconceptions, urban legends, and things that even my cat T'loo knows aren't well regarded in the medical community anymore that it's pretty much a parody of misguided assvice.

This year's second runner up pet peeve: The phrase "There (is) no cure but it (can) be managed through surgery, pain medication or by hormonetherapy" (from this less-than stellar article). Managed? That reminds me. Did you know that my Endometriosis is "managed?" According to the AMA and the world at large, performing surgery that does not eliminate the problem, pumping me full of hormones that have been conclusively linked to cancer, providing me with inadequate pain treatment (that endangers my liver and kidneys) and then cutting me loose without any longterm treatment plan is adequate management. The amount of pain I'm in on a daily basis? That's A-Ofucking-Kay with the AMA.

I am a success story.
I am going to vomit.

Great. Now I'm all angry, which means I'm rejecting my femininity, which, as well all know, is the real cause of Endometriosis. Hey, did you know that the uterus is a disease condition in and of itself?

Well, I'm off to put on some high heels, hypnotize my way to bigger breasts, and simper and flirt until I don't have Endometriosis anymore. Hey, if Christiane Northrup says it, it must be true.

Original Comments

Wanted: Map

I need a map, because I don't know where I am.

See, the way it's supposed to go is :

Sam and Akeeyu,
sittin' in a tree,
K-I-S-S-I-N-G.
First comes love,
then comes marriage,
then comes Akeeyu with the baby carriage or, if the baby carriage is delayed, at some point they find out that Akeeyu is infertile, or sub-fertile, or differently fertile, or whatever the fuck they're calling it now, or that Sam's sperm all swim in circles, or that he has superbad retrograde ejaculation and that the earwax he's been cleaning out every morning isn't earwax, or that Akeeyu's immune system is the equivalent of a Pinto with electrical problems, or that her innards are clotted up with creeping crud (aka Endometriosis) and then Akeeyu starts blogging and eating large amounts of cheesecake.

Only I've been doing it backwards.

I have kept journals since I was ten years old, so I know when it all happened. I have a draft somewhere that outlines The Saga Of My Snatch from 1990 onward.

Somehow, I missed out on the blissfully ignorant faith that most women seem to have in the fact (or, in light of my current situation, the foolish theory) that their innards will function correctly when the time comes. That everything is normal. I have known that everything isn't normal for fifteen years. Slightly over half my life. It's kind of a fucking downer.

In the last few years, I learned how to say "infertile" and "barren as the fucking Sahara" without crying. I learned how to make jokes about it. I learned how to be Akeeyu, the one with Endometriosis. The one who's probably sterile. The bitter one.

Now I'm making all these appointments, having tests run, taking (ha!) pre-natal vitamins. Barring shocking results from Sam's SA, we'll be trying the old fashioned way. You know, sex? How quaint! I'm doing all these normal things, walking into hospitals, offices, labs, and I look like a normal woman, right? And they treat me like a normal woman. They ask me when we're going to start trying, as if that date somehow correlates to when I'll be pregnant. Ha! I say "March," and always want to add, as a post script "...but it's not like it's going to work." I'm reading the right books, eating the right foods, making the right plans, but deep down, I have no faith that any of it will work.

The problem is that I know how to have Endometriosis.
I know how to be Probably Sterile.
I know how to deal with these things.

I do not know how to be normal anymore.
I do not know how to deal with hope.
I do not know how to feel hopeful without letting it destroy me.

Original Comments