Wednesday, May 30, 2012

Today

Today is the first day since surgery number five in less than two years I awoke to my boyfriend's alarm and did not (want to) go back to sleep. I have had a hell of a time falling asleep since my most recent surgery.  I've tossed and turned, looking at the clock 2 a.m...toss, turn, toss, turn..3:15 a.m....toss, turn, toss, turn...4 a.m.  So, when I finally fall asleep, I have been only asleep for two or three hours when that alarm goes off. 

I've always had problems with falling asleep because I have a hard time turning my brain off.  I don't have anything in particular that I think about when I'm trying to go to sleep.  Mostly, I try to think of ways to trick my brain into turning off. Toss, turn, toss, turn OFF ALREADY, stupid brain!  But, thinking about ways to turn my brain off ultimately leads to more thinking and more of my brain laughing at my futile attempts to turn it off.  

When I'm in pain, I mostly shift around trying not to be in pain so I can sleep.  Pain is insidious.  It mocks me.  It makes me irritable.  It plays tricks with my mind, leading to more thinking about the cause of the pain.  Before my surgery, the pain had me convinced of a different ailment or post-surgical complication every night. 

I still have pain.  One of my endo sisters described the pain post-laparoscopy as like a hot knife running through your abdomen and pelvic region.  And, that makes sense, since indeed it was a hot knife of sorts, a laser, that ran through my pelvis to remove my remaining ovary, my cervix, and the adhesions that attached parts of my descending sigmoid colon to the left side of my pelvic wall.  

The pain today seems better than yesterday.  I actually felt good about facing the day and decided to take my dog for a short walk.  

The next challenge is to get my hormones straightened out and to get back to living instead of avoiding anything that increases pain. I think that is why I am having a particularly hard time falling asleep.  I'm now wearing an estrogen patch.   Tomorrow, maybe I'll start to figure out the next doctor I have to go see to get my hormones in balance.

Today, I have the pleasure of feeling better than yesterday.  When you have chronic pain, you learn to savor these moments because they seem so few.  I'm hoping each day gets better, but know I would be a fool to have such high hopes.  It cuts like a knife, or perhaps a laser, when tomorrow is worse than today.  Yet, somehow, I keep having high hopes on days like today.  

I'm not a fan of Bryan Adams.  I am a fan of silly 80s music videos.  Hoping it doesn't cut like a knife tomorrow.  The woman with way too much makeup getting dressed in a a bathing suit and jumping in the empty pool only to get wet in the end...that's deep, man.  ;^)

Tuesday, May 15, 2012

Tomorrow

Tomorrow I say goodbye to my remaining reproductive parts that qualify me as belonging to the category "female."  I'm not really sure how I feel about this.  Right now I feel nothing other than hunger and anxiety.  I am not allowed to eat anything substantial today--only jello and broth.  Jello.  Ugh.  I cannot adequately express how much I hate jello.

Tomorrow I will have my right ovary riddled with cysts removed.  I doubt it is producing much estrogen. I will also have my cervix, the neck of the uterus, and my appendix removed.  I may have a portion of my bowel removed.  I will spare you the details of the bowel preparation I have to do today and tomorrow morning. Dave Barry's journal of a colonscopy preparation humorously sums it up.


While the initial days following surgery are sure to be painful, I hope that I will have less physical pain than I do now.  The emotional pain will take much work.  

I have said outwardly to many people that I did not want children.  I wonder how much I was trying to convince myself because I knew that it probably wasn't in the cards for me or if that is how I really feel.  I love kids.  There are two in my life that I particularly love and am grateful to have.

It is quite another thing to lose the ability to have biological children completely.  It is a loss that I will mourn silently with the hope that I will have gained freedom from the shackles of pain. 

We often look back to pre-modern "healing" techniques and cringe--leeches, trepanning, blood letting, induced vomiting.  I think we have made much progress.  I thank the heavens for anesthesia.  But, I can't help but wonder if future humans will look back on how many women are castrated today and cringe.  

Today, my heart is hollow as I cringe and swallow hoping for a better tomorrow.

Wake up, going to wake up to nothing...and when your heart is hollow, another pill to swallow...Sister, sister, what did they do to you?




Friday, May 4, 2012

Dr. Whatsherface Makes Jen Fly to the Big Apple

I had to make an appointment this week with my new primary care physician as I am no longer living where I usually reside because I cannot take care of myself and because the health care "system" (if you want to call it that) sucks in Deliverance Land.  My primary care physician would not refill my blood pressure medication because they wanted to check my blood pressure first.  I called and informed her office that my blood pressure was just fine, as I check it pretty frequently on my own. They did not accept this and required me to make an appointment so that Dr. Whatsherface could bill my insurance...errr...check my blood pressure.

This is a rough account of how this appointment went today.  It was scheduled at 2:30 pm.

Cue action!

Jen arrives to her doctors appointment 12 minutes early because she is respectful of other people's time.  Jen signs in at 2:18.  

Front desk clerk: Insurance card?

Jen: You have my insurance information.  It has not changed.

Front desk clerk looking impatient and bored: I have to copy your insurance card every time you have an appointment.

Jen looking skeptical: OK.  Digs around in her purse for her wallet to retrieve her insurance card and hands it to the front desk clerk.  Here it is.

Front desk clerk:  Where is the insured's ID number?

Jen:  I go through this with every doctor's appointment.  My insurance card is weird.  The plan number is in the upper right hand corner.

Front desk clerk: Yes, but I need the ID number.

Jen:  The only ID number I know of is on the other side.

Front desk clerk: That is your prescription card.

Jen:  It works for my prescriptions and my health insurance claims.

Front desk clerk sighs and rolls eyes:  Hang on, let me check the computer.

Jen: This card worked just fine the last time I was here.

Front desk clerk:  Oh, here you are.  And, yes, it looks like that is your ID number.  That is the strangest health insurance card I have ever seen.  Hands card back to Jen after she scans it.  

Front desk clerk: Looking at her computer screen.  It looks like you have a $25 co-pay.  

Jen:  Not even trying to hide sarcasm.  Yes, that is what it says on the card.  Retrieves her debit card from wallet and hands it to front desk clerk.

Front desk clerk: Takes debit card and scans it.  Credit card machine prints 2 copies.  Hands Jen both copies.  The top copy is mine.  The bottom copy is yours.  Still looking at computer screen.

Jen: Signs the top copy, thinks about handing the clerk the bottom copy to see if she notices, and decides it is not worth the effort.  Hands the signed top copy back to the front desk clerk.

Front desk clerk: You may have a seat.

Jen sits down and begins to read her Kindle.  She becomes so engrossed in the book that she scarcely notices that there is no one else in the waiting room. Later a man enters the waiting room, and Jen faintly hears the same voice (Insurance card, please?)  Jen thinks, "What the fuck?  I didn't get a please." What appears to be a mother and daughter tandem appear from the treating area where they do all of the important work.  Jen wonders what time it is and digs in her purse for her cell phone.  She is upset to learn that it is now 3:30.  Five minutes later another nurse appears from beyond the door where they do the important work and calls for Jen. 

Nurse: May I get your weight?  Please step on the scale.

Jen:  Joking, sarcastically.  I guess I don't get a choice, do I?

Nurse: Does not look amused.  129 lbs.

The nurse directs Jen to room #2.  Jen notices 4 other rooms that are open and empty and 2 nurses sitting behind a nurse's station where one nurse is playing solitaire on her computer.

Nurse: Please sit on the table.

Jen:  Thinking, "Well, at least I got a please." 

Nurse:  I need to get your vitals.  Checks pulse.  62.  Checks temperature.  97.9.  Checks blood pressure.  122/90.  Your blood pressure is high today.  What brings you in today?

Jen: Well, your office said I had to come in to get my blood pressure checked to get my blood pressure medication refilled.  Yes, my blood pressure is high today.  But, it is not normally high.  It is high because I am in pain, and I am angry that I had to wait an hour for an appointment I didn't really want or need so that your office can bill my insurance and charge me my $25 co-pay.

Nurse: Seems angered.  Dr. Whatsherface will be in shortly.  Nurse leaves patient room #2 and closes the door behind her.

Jen gets off the table thinking she will have to wait at least another 30 minutes.  She sits down in the chair in the room and begins reading her Kindle.  To her surprise, Dr. Whatsherface opens the door in about 10 minutes.

Dr. Whatsherface: Hello, Jen.  What brings you in today?
Jen:  As I told the nurse, I am here to get my blood pressure checked so that I can get a refill on my blood pressure medication.

Dr. Whatsherface: Can you sit up on the table, please?

Jen sits on the table.

Dr. Whatsherface: It appears your blood pressure is high today.  I would like to check it again.

Jen: Annoyed.  As I just told your nurse, my blood pressure is high today because I am in pain.

Dr. Whatsherface:  Why are you in pain?

Jen:  I have chronic pelvic pain, pain in my left hip, pain in my left thigh, pain in my left flank, pain under my ribs, and pain in my lower back.

Dr. Whatsherface:  Looks concerned.  What is causing this pain?

Jen: Dr. Whatsherface obviously did not look at Jen's chart before coming into the room.  Well, as I told you the last time I was here, I have a history of endometriosis.  I have had 4 surgeries since September 2010, one of those a spinal fusion surgery.  I am having surgery again in a couple of weeks for the chronic pelvic pain, so I would prefer not to tinker around with my medications until I have that surgery.

Dr. Whatsherface:  What is the surgery for?

Jen:  It is for the chronic pelvic pain.

Dr. Whatsherface: Yes, but why are you having surgery again?

Jen: Because I have pelvic pain.

Dr. Whatsherface:  Who are you having surgery with?

Jen: With Dr. xxxxxx at the Center for Endometriosis Care.

Dr. Whatsherface:  I've never heard of the Center for Endometriosis Care.

Jen: Well, you can look them up on line.  They operate out of Northside Hospital.  

Dr. Whatsherface:  Why are they operating again? 

Jen:  Getting impatient.  Because I have pain and because I am having difficulty eating.

Dr. Whatsherface:  Why are you having difficulty eating?

Jen: Because it hurts to eat.

Dr. Whatsherface: Looks at my chart briefly.  Yes, you have lost 12 pounds since you were here last.

Jen: Yes.  All of the muscle I once had has turned to fat because I can no longer exercise and because I cannot eat.

Dr. Whatsherface:  Why are you having surgery for endometriosis again?  Didn't they remove it all?

Jen:  I don't know.  I may just have adhesions.  I've already had a hysterectomy and my left ovary removed because it was severely adhered to my lower intestines.

Dr. Whatsherface:  Adhesions do not cause pain.  Have you thought about whether it could be something else causing your pain?

Jen: Yes.  I have.  I have been to a urologist who checked for stones and a UTI because I am having pelvic pain and flank pain.  I don't have a UTI or kidney stones.  Before I had a hysterectomy, I went to a gastroenterologist and had a colonoscopy because I wanted to be sure before I had my uterus removed as I have not had any children.  He did not find anything wrong with the inside of my colon.  The colonoscopy did reveal something, though, because I woke up during the procedure in severe pain.  It told me that there was indeed something wrong with my colon, but I think it is on the outside.

Dr. Whatsherface:  Have you considered seeing a different doctor?  I don't think this is endometriosis since you have already had a hysterectomy and had the endometriosis removed.

Jen:  Blood pressure rising higher, really angry with Dr. Whatsherface because she is just repeating what she vaguely remembers from medical school.  What doctor do you suggest I see?

Dr. Whatsherface: Perhaps you could see someone from Emory?

Jen: What kind of doctor from Emory?

Dr. Whatsherface: I don't know, but this seems like a lot of surgery.

Jen: Thinking, at least she said the magical words, "I don't know." Yes.  But, how is any doctor going to figure out why I have excruciating pain and difficulty eating besides to cut me open and find out?

Dr. Whatsherface:  I think it might be something different since you've already had surgery for endometriosis.  Maybe you should get a CT scan.

Jen: Can feel blood pressure rising, just wants her fucking prescription and to have some time during the day not spent in a doctor's office or pharmacy.  If it is endometriosis or adhesions, it will not show up on a CT Scan, and I don't want to waste more money on another scan that will likely show nothing. I have a lifetime limit on my health insurance.  My back surgery alone was a quarter of a million dollars.  I've had three surgeries for the chronic pelvic pain in the past 2 years. Every time I have to make a doctor's appointment to get my prescriptions refilled, your office is billing my insurance company hundreds of dollars.  I've already made the deposit for the surgery.  I'll let you know what I find out.  Can you please give me multiple refills on my prescription? 

Dr. Whatsherface: Puts the blood pressure cuff on Jen and squeezes her arm.  Your blood pressure is even higher now.

Jen:  You don't say?

Dr. Whatsherface: OK, I'll go get your prescription.  Leaves room and closes door.  Comes back 10 minutes later and gives Jen the prescription.

Jen: Thanks.

Dr. Whatsherface:  Best of luck with your surgery.  Make sure to have them fax me your records.

Jen: OK.  Will do.  Leaves Dr. Whatsherface's office without looking at congenial front desk clerk and heads straight to the Big Apple nail salon for a pedicure she cannot afford so she doesn't punch someone in the face.  Ahhhhh...pedicure.





Wednesday, May 2, 2012

Don't Believe the Hype: Men are from Earth, Women are from Earth


I have an aversion to all encompassing statements (never, always, forever, every, all, none), grand narratives, fundamentalism, essentialism, and the like.  Sometimes I forget.  When I'm feeling down because of relentless pain, I feel never, always, forever, every, all, and none.  It takes every fiber of my being to avoid it. And, it is always painful to fight.  Authors of grand narratives always have an agenda.  I suppose all authors have an agenda.  I will always have an agenda.  It is never the same agenda as yours.  DON'T BELIEVE THE HYPE.

My agenda may be the same as yours.  We don't know unless we talk, unless we reason, unless we contemplate, unless we research, unless we try to never be always.

Because I consider myself a gender scholar, I am particularly wary of those that declare women are this and men are that or that one is better than the other.  The history of (Western) civilization has taught us that men are better at everything except perhaps nurturing.  Our gender system denies that there are wide and wonderful variations among women as a group and among men as a group and that there is much overlap between them.  I've known many men to be more nurturing than some women.  I've known many women to be more cutthroat and aggressive than some men.

Having a vagina or having a penis does not make you what you are.  It is what you DO, how you FEEL, how you PLAY and WORK with or, often and unfortunately, against others.  Western civilization likes divisions, likes clear categorization, likes never, always, forever, every, all, none.  It likes things and people to be put in their place.  It likes hierarchical binaries--normal/deviant, good/evil, man/woman, white/black, heterosexual/homosexual, friend/enemy, love/hate, mind/body, liberal/conservative, left/right, doctor/patient, beginningometriosis/endometriosis.  It likes to exclude, denigrate, punish, often but not always, for simple self-aggrandizement. 

It does not like ambiguity, commonalities, working together.  Men are from Mars. Women are from Venus.  Bullshit.  We are all from the same planet.  We would do well to stop emphasizing difference and stop warring with one another so that we can enjoy our wonderful and varied humanities and work toward something greater knowing that it will not be perfect or easy.  We would do well to work toward something greater believing it is in humanity's interest that we do, feel, play, and work together perhaps not forever and always but the best we can while we are here.  


DON'T BELIEVE THE HYPE.


Monday, April 23, 2012

Convulsion Shits

This morning I awoke to the most god awful pain in my left side.  My pain, that endometriosis or my fucked up back may or may (have) not cause(d), has always been left-sided.   Maybe I was born a political lefty.  There is no way that can be genetic.  My dad had the bad back, my mom has the endometriosis, neither the political leanings I do.  The left ovary is the one that I blame for this whole mess.  I hope you are rotting in hell, you worthless piece of shit ovary.

My left ovary was removed last May.  It kept exploding with cysts.  Some may beg to argue with my characterization of ruptured ovarian cysts as exploding cysts.  I experienced them as exploding cysts.  They sent me to the ER on more than one occasion, most notably after exploding during sexual intercourse with my boyfriend.  Fuck you, left ovary.  That left ovary was stuck to my bowels with adhesions on my last two trips into surgery land for my endometriosis.  Adhesions--yet another term Firefox does not recognize.  It is scar tissue.  And, if you are wondering, yes, adhesions cause pain too.  They prevent organs from freely moving as they are intended to in your body, especially in your abdominal cavity.  Firefox really needs to add some medical terms to its dictionary.

My surgeon tried to save the left ovary.  I don't know why.  It was a worthless piece of shit and still causes me pain even though it is gone now.  I suppose I understand why the surgeon wanted to save it.  I've tried to save worthless piece of shit relationships, worthless piece of shit people, and this worthless piece of shit world on more than one occasion.  [Have I told you about the punk anarchist that sits on one shoulder and the hippie on the other shoulder?  The punk anarchist is screaming today.]

Following the god awful pain in my side were some bowel movements that sent me into convulsions on the toilet.  I have no shame anymore in sharing the bodily functions social mores have taught us to hide.  I want the world to know what it is like to live with this disease even after LAPEX (laparoscopic excision surgery), the "gold standard" of treatment for endometriosis. 

Although I have no scientific evidence for this belief, I believe that older bodies and minds scar more easily.  If you have ever watched a kid fall really hard and bounce right back up, you know that kids' bodies can more easily absorb impacts.  Although it seems devastating at the time, teenagers seem to recover more quickly from broken hearts.  I believe younger bodies and minds recover more easily from injuries, broken hearts, and surgery.  Less scar tissue is left behind.

Parents, grandparents, friends, and other loved ones, please listen to your girls.  If they tell you they are in pain, believe them.  If their menstruation pain cannot be resolved with over-the-counter medications, if it makes them miss school or family activities, if it makes them lie in bed curled in a fetal position, it is NOT NORMAL.  Talk to them.  Get them to a gynecologist that specializes in endometriosis, preferably an excision specialist.  I hope for a day when we do not have to cut girls and women open to cut out the endometriosis lesions that bleed and bind abdominal organs together [Shut up, you fucking hippie.].  We are not there yet.  But, we do have more and better LAPEX surgeons than we did when I was a teenager.  They are the best hope women with endometriosis have for living a relatively pain free life.  

I'm screaming on the left inside today from what may have been left inside. 

That is today's crotch report.

Signing off,
Jen Pem

Saturday, April 21, 2012

What do I do?

 
What do I do?  Many people ask that question.  In our society, when someone asks you that question, they want you to tell them what your occupation is or what you do for a living.  What is it that you do that makes you worthy of numbers appearing in your bank account so that you may have a place to live, food to eat, clothes on your back, and perhaps a little left over to do something for fun?   When most people I don't know ask me that question, I tell them I am a professor.  They seem quite impressed and often shocked as I do not look like the typical professor.  I look relatively young.  I am a woman.  And, I don't wear a tweed coat or smoke a pipe.  I am always taken aback by how impressed or shocked they seem.  I'm not that impressed.  Like David Byrne, I often wonder how I got here.

They typically follow up by asking what I teach.  I say sociology.  That is when many stop being impressed.  Most do not know what sociology is.  Hell, most sociologists don't know what sociology is.  If they do have some vague idea about sociology, most assume that I am a card-carrying communist and worship at the altar of Karl Marx.  (As a side note, I do love me some Karl Marx.  He is one of the reasons I was drawn to sociology.  He saw suffering and injustice and imagined a utopia free of suffering and injustice.  I don't know what is so wrong with that.  Without the imagination for a new and different world, nothing will ever change.)  If they don't know what sociology is, they usually ask if it is like psychology.  I say, yes, in that both disciplines study people, but sociologists tend to focus on groups of people rather than individuals or individual states of mind.  I then try to divert the conversation away from that topic because, quite frankly, it is quite difficult to explain what I do.  And, most people in our country equate Karl Marx with communism and communism with totalitarianism.

I have a PhD in sociology.  When I am feeling well, I teach "sociology" at a liberal arts college.  I chose sociology as my discipline because I am easily bored, and I figured I could study anything I wanted to with a PhD in sociology.  It is also the discipline that spoke to my lived experience as a young woman from a white, working-class family, or what some might see as "southern white trash."

Sociology is not much of a discipline as it is an approach to critically examining the world.  I try to get my students to be THINKERS more than anything else.  I think I frighten many of them.  If I reach a few, I feel I am doing my job. More than anything I want to write about mine and others' experiences with endometriosis to expose the atrocities that women with endometriosis, and women in general, face in nearly every place around the globe.  I am working on this.  You will see a link on this blog and elsewhere for a study I am conducting on those with endometriosis. It is under construction. I want to give voice to those who have been silenced for far too long.

I am unabashedly a feminist.  When I say this, most assume that I am also a butch, lesbian man-hater. Some who call themselves "feminists" do hate men.  I think those people are just as uninformed and narrow-minded as those who label me a lesbian pinko commie when I tell them I am a sociologist.  

I am also a troublemaker when I am feeling well.  Troubling people makes them evolve.  I am constantly troubling myself by reading anything and everything I can get my hands on.  

Telling you what I am, however, is not the same thing as telling you what I do.  If I were being truthful, what I do now is go to doctors and pharmacies.  The number of doctors are staggering.  I have a primary care physician, an endometriosis excision specialist, a gynecologist, an endocrinologist, a cardiologist, a urologist,  a neurosurgeon, and a physical therapist on my payroll. In the past several months, I cannot remember how many times I have had my feet in those stirrups. I don't have a horse, but I ride that examination table like a filly.  I sleep a lot, once I fall asleep. Falling asleep is difficult for me these days.  I dread waking up.  When I wake up, I am in pain.  When I am asleep, at least I am not aware of the pain.  

What do I do?  I have been asking this of myself lately.  It is quite a different question when you ask others, "What do I do?"  They can suggest.  No one can really decide for you.  I know I cannot keep sleeping to avoid pain.  So, what do I do?  I am preparing for my fifth surgery (one of them a back fusion surgery) in less than two years.  Unfortunately, there is no way to tell what endometriosis is doing to the insides of your body other than to cut you open and find out.  There are no treatments other than to suppress your ovaries with GnRH agonists like Lupron (which I refuse to do...check out the side effects and the lawsuits regarding this drug) or trick your body into thinking it is pregnant with birth control pills. I took birth control pills for fifteen years. They helped keep the endometriosis at bay but ravaged my body and mind in other ways. I now have hypertension and am too old to take birth control.  Unless there is an endometrioma on your ovary or a large lump on your uterus (which I no longer have anyway) indicating adenomyosis, you cannot see endometriosis on an MRI, CT Scan, ultrasound, or X-ray.  So, under the knife...err laser (my endometriosis surgeon does not use a scalpel)...I go again.  I hope this time it will be the last. There has to be hope for a utopia for me anyway.

I do know that I cannot let keep letting the days go by wondering how I got here.


And, that is today's crotch report.  
Signing off,
Jen Pem




Friday, April 20, 2012

Introduction to The Crotch Reporter


My name is Jen.  I am human.  I have feelings, emotions, and thoughts.  I also have a disease called endometriosis (en-doh-mee-tree-OH-suhs). Although I believe I have suffered from this disease since at least the age of 12, when I started menstruating, I was not diagnosed until I was 34.   Endometriosis is a disease that is widely misunderstood.  It is pervasive, affecting approximately 10% of women or 176 million girls and women worldwide (Please see the Endometriosis Research Center at http://www.endocenter.org/ for more information).  Yet, Firefox does not recognize its correct spelling and provokes me to change it with its red squiggly underline.  I am really considering writing or calling Mozilla about this issue.  Are you listening Mitchell Baker??? Time listed you as one of the most influential people in the world in 2005.  You are a woman.  Yet, the product that you helped market as an alternative to Microshaft IE does not recognize the word, endometriosis.  I am losing respect for your product as I write.

I cannot remember the number of doctors I have been to in my lifetime to report the debilitating symptoms, most notably PAIN, of endometriosis.  Yet, it took 22 years for these numbskulls to diagnose me.  (More on these various numbskulls later...)  I am starting this blog to document my struggle and my journey.  It will primarily revolve around my experiences with this illness. I have other interests, so I will occasionally write entries about them too.  This blog is an attempt to reclaim the humanity that endometriosis and countless doctors robbed.  This blog is crotch journalism.  There are other crotch journalists reporting in wonderful and varied ways.  I am thankful for them as they have inspired me to find my crotch's voice. 

I must credit a thoughtful and wonderful colleague of mine who asked for a crotch report yesterday.  Here is my crotch report for today:

I have no kidney stones and no UTI (Urinary Tract Infection).  I was hoping that the primarily left-sided pelvic pain, flank pain, and pain under my ribs was (a) kidney stone(s).  It is sad when you are hoping for kidney stones. I went to a urologist yesterday who tested my piss and did an ultrasound of my kidneys. Ironically, I was reading about the Rolling Stones in Keith Richard's Life as I waited for an hour to see the urologist. I'm still waiting on one culture that was sent off to a lab.  I don't expect it to be cloudy.  That ends today's crotch report.
Signing off,
Jen Pem