First Step – Research

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My old treatment plan – bed and pain pills.

I’ve always been a proponent of learning. Since I was wee, I have loved reading and considered it power. My earliest dreams were to get out of my small town and experience more of the world, and my immediate answer was to educate myself so I could have the money to do so. Education and reading has always been my most valued tool. Which is why my inaction in helping myself, health wise, should have been puzzling.

So often doctors counsel us to not WEBMD ourselves. Don’t Dr. Google they say. However, what is a patient to do when doctors don’t listen, or maybe they do but don’t have the answers? I’m not saying Dr. Google is the most reliable source of information, but there are sights that service specific ailments, and are manned by reputable sources and there is the library.

A doctor will see us fifteen minutes every couple weeks IF we are lucky enough to have insurance. Even if they know what’s wrong with us, is that really enough time to tell us all of our options for treatment or even how to enact that treatment. I have spent more time with personal trainers, farmer’s market proprietors, and house cleaning people, and spent less money on all of those services. Is it sad that I found out more and had a longer conversation about where my peaches were grown from the farmer’s market proprietor than what it means to be diagnosed with PCOS from the proprietor of my healthcare? I’m not saying that my doctors are bad in any way. I have loved my general practitioners back in Boise and here in Philadelphia. They have my respect and I feel I have lucked out. Still, I feel like there is no such thing as comprehensive medical care. I am saying that the system is wrong and the only way to combat that is to educate myself.

Sadly it took me too much time to realize that. I have just taken what doctors have told me and done what they have asked and that is all. Total trust and reliance in the medical profession has been my go to for far too long. I have been given many diagnoses in my quest for pain relief: PCOS, endometriosis, adenomyosis, fibroids, and dysmenorrhea. (The last one I believe is just a bullshit excuse not to do anything about a woman’s pain.) I was told the doctors recommended course of treatment and I followed it, but only their course of treatment for about ten years. I listened patiently and did what I was told. There are many social cues that tell us to follow what the doctor says. I guess that is appropriate because of all their education they deserve respect. However, there should have been a point in each of those diagnoses’ which as a patient I took responsibility to be more educated and this year I have. Let me say, it has made me feel better.

In my defense, it has been hard before now. I am extremely lucky in that my husband is supporting me right now. My number one responsibility is to get rid of this pain. While it is still not easy to read books, scout message boards and research web sites while either on pain pills or in massive pain, it is better than while working forty or more hours a week. However, I am working toward a better life none the less. I have been researching so much my physical therapist may just learn a few things from me.

My plan is to become so informed on all my diagnoses’ that there isn’t any course of treatment I don’t know about whether western medicine, eastern medicine or natural remedy. This has been the best thing I have done to make me feel as if I have power. My library card, my laptop and I are a powerful trio that has provided me with many answers.

My newest diagnosis is that I have a too tight pelvic floor. This is a fairly new field- pelvic physical therapy. I was told by a gynecologist here in Philadelphia that it has only been available in maybe the past five years. So when I feel pissed off that no one realized this was my problem until now, I must understand the science wasn’t there. I have read a couple of books, countless web sites, and watched many hip opening, hip stretching videos. I have met with my physical therapist twice who has examined me twice. My therapist gave me one exercise to do every two hours. So far this is what she asked me to work on. I have done that but I am also doing about twelve more stretches as part of my everyday yoga routine. I am keeping track of my diet and how it makes me feel. I am reading up on nutrition and supplements for IBS which is related to the pain. I am also trying to work on my related fibromyalgia and am looking into getting a hysterectomy to take care of my “dysmenorrhea” AKA painful periods because I believe they caused this problem in the first place. I am building my own comprehensive care.

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My new treatment plan- laptop, Nook, yoga mat and notes. 

This week is the first week in years I have gone an entire week without one single Aleve or any other pain pill. It is the first week this year I haven’t needed something heavier than that. I have hope. If all my research has done is give me the fallacy of control, then right now that is enough. More than that, it has definitively made it so that I can make more informed decisions when the doctors give me a choice. While I have to understand it is because of my new cutting edge pain expert gynecologist and this physical therapy, I also feel a good part of the solution has been my determination and my library card. I’m in charge now.

Crash Toone

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This was one of my very high pain days! 

About three weeks ago, I had an appointment with a genetic counselor. I didn’t want to go, but I saw it as a stepping stone to getting my hysterectomy. With my fibroids and supposed Endometriosis, I thought this might remove my pain. My doctor said that she wouldn’t take out my ovaries unless I was at great risk of cancer. I can’t tell you how much that ticked me off. I was under the impression my ovaries were causing me pain. So what? I am supposed to go to this appointment to find out that I am at great risk for cancer? Really?

Well, it didn’t turn out that way. I refused to take the blood test. I don’t want to know if I am at great risk of ovarian or breast cancer. I really don’t. I also don’t want my DNA on file with some lab for them to test. The counselor told me I shouldn’t do it if I felt uncomfortable. So I didn’t.

So I went back to the gynecologist, who is also a pain specialist, who told me that there was no reason to get my ovaries taken out because my ovaries are not causing the problem. She is now telling me that I may not have endometriosis, but too tight pelvic muscles, IBS, and too much stress. Since I have heard for years that this pain is part of my reproductive organs, and this doctor’s office agreed a couple weeks before, I had a hard time believing this new information. It took her the better part of an hour and an intense examination to, sort of, prove it to me. Rather, I should say to get me to shut up and go away dismayed and disillusioned.

I walked to meet a friend who was there for me because we both knew this appointment wouldn’t have definitive answers. She and I talked and she amazingly enough comforted me as much as you can a person who is overwhelmed with emotions, and hasn’t really processed something. On the way home after leaving her I fell in a rather dramatic fashion on thirteenth in the middle of two restaurants outdoor seating. I did a slight somersault and knocked over some chairs. It earned me the nickname Crash, which I have to say I am taking a liking to. Husband says it’s shocking someone hasn’t said that before. Not only because I am unbelievably clumsy at times, but because I like to attack problems and even social situations with all the subtlety of a hammer. I think it makes me sound like a superhero Crash Toone.

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Part of the damage from my fight with the pavement

That was about two weeks ago. Since then I have been processing all this information and I have started physical therapy for pelvic pain. I have also had two of the worst weeks of this pain I have ever experienced. I don’t know if that means it is working or not. I have been on my pain pills most of the time but when I wasn’t I was crying from a deep engulfing depression. It’s been overwhelming. It has been isolating so I haven’t just stopped blogging until now but also haven’t talked to a lot of family and friends. I just had to work this out of my system.

See this new diagnosis I am holding as tentative. It requires me to go to three different doctors several times and change my diet, my exercise program, and my schedule. It is also very expensive. I could go through all of it and still be in pain.

My homework from my first physical therapist appointment is that I have to do ten upward dogs every two hours, and for three days write down my food intake and my waste outtake. That’s uncomfortable. I still have to make some other appointments. I know I should have more done but I promise you that I have been going through the worst pain in my life so far, and hopefully forever.

Last night I finally put on my big girl panties and decided to do attack this with more vigor. I am not going to be grudgingly going to my doctor’s appointments. I am going to be CRASH TOONE, attacking the pain. I am going to plan and write down everything I eat, cut out everything I need to, and do all my physical therapy. I am researching everything I can about all of these diagnoses, and going above and beyond. If this doesn’t fix me I might just have to camp out at my Doctors office until I get an answer. Crash Toone is done playing around.

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Crash Toone: Because superheroes should always have a red lip. 

What a Miracle is my Body

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This is me after a seven block walk. I sweat profusely.

So much of my life is built around distracting from my endometriosis pain right now. I watch TV or listen to music while reading. If I engage my mind enough then I can ignore the pain. It is only partially successful.

I realized, as I walked to the library, that distraction is how I’ve always gotten through exercise. I don’t like to sweat. It is uncomfortable, although I am working on that distaste. Exercise has always caused pain in my ankles and I’ve never been good at it. Today, I walked in the heat as fast as I could manage to the beat of my Lady Gaga Pandora channel. I used the beat of Pitbull’s Shake Senora to move faster and faster. By the time I made it to the library I was dripping with sweat and my pants were sticking to me. If there were such a thing as tiny men, they could have slid down my cleavage like a slip and slide.

This is in total contrast to my yoga experience. Every move in yoga has to be thoughtfully carried out. For one, my balance, as it stands, is horrible. Some of the poses require me to be on one foot or one knee. I have trouble with standing on two feet or balancing on both knees. I am learning and practicing over and over, but seriously have to concentrate. I have to feel every part of my body and muscles I didn’t know existed. Normally when exercising, I would try to ignore pain in my muscles or work through it, using the adage “no pain, no gain” or more likely I’d give up. With Yoga, if there is pain—I am doing something wrong. Not only do I have to concentrate on my muscles, hand and foot placement, and balance, but then there is the breathing. Yoga just isn’t the same without the breathing. The deep breathing brings in a sense of calm that I have never experienced with other exercise.

It amazes me the contrast. I love the difference. I believe that is why I love yoga. I love how I can totally immerse myself in the activity. I breathe in and out slowly and deeply. I free my mind of anything that doesn’t have to do with the pose at hand. When it is really good and I have focused enough towards the end of the practice I am more aware of what my body is doing than I have ever been.  By focusing intensely on what I am doing and making sure it feels good.  There is gain with no pain. Don’t get me wrong I feel strain on my muscles but I don’t feel pain.

I have always ignored my body because I have been told no pain no gain.  I wasn’t very good at sports because of my bad ankles, and I was never the type of body I wanted. I got told repeatedly by society, my family, and even “friends” I was the wrong body type. When I repeatedly fail at something, I tend to forget about trying it again. I have hated my body because of what it could not do. It could not be good at aerobics, softball, or volleyball. Even worse, It could not be skinny. Don’t get me wrong, it was thin at one time, just not the thin that was popular in my youth. It was curvy thin. I hated it. I wanted to be the woman who could wear pleated pants and poufy shirts a’ la Different World. I wanted to be Lisa Bonet.

I surely didn’t want to be me, with my curves and very strong muscled legs. I wanted to be like a reed in the wind. Then I became known for my curves and then abused because of them, and then I wanted to be a bulldozer, not a human.  So more and more I retreated into this body, and wore it like a coat, a covering for my soul but not something that affected my soul.  IF I could distance myself from my body then I would not be responsible for it or how it made other people think about me. I thought I’d focus on what I was good at, reading.

Recently, I have distanced myself so far from my body because it seemed mean to me: the pain my body brings me, the interruption to my day, and pushback of my goals. My body has been a bitch for quite a long time. (While some of that has been caused by me ignoring her, most of it hasn’t. Endometriosis can’t be exercised away. It can only be burned away or excised by a doctor). Trust me it wasn’t hard to get mad at my body.

Yoga has helped me to forgive her. Yoga has helped me see that this body people made fun of, that wasn’t good at sports, had weak ankles and poor balance – even she could be loved. At first yoga was another distraction from the pain but as I got into it, and as I started awakening the understanding of my bodies minutiae it started easing the pain. I started to realize that just like any love I had to actively participate in the caring for the object of my affection in order for it to thrive. Those balance issues are still there, but it works my ankles and they are getting stronger. I am so aware of my body, I can tell when I am going to start sweating. I feel the heat from within and I welcome it. For the first time in my life I welcome the sweat. What’s more is that the first time I did it, I was really bad at it, but the more I practiced –miraculously- I got better. For the first time in my life I got better at exercise. Each pose takes time to master, but when success comes I am overwhelmed with gratitude for my body.

It is only recently through yoga and my families help have I been able to figure out a way to celebrate what my body is capable of. I am super stretchy, more than the average bear. My body likes yoga, it craves it. I am a good swimmer. I am a good dancer, with a natural rhythm. My legs are super strong. I ride bicycles with ease. I am double jointed in my fingers, I do a mean downward dog, and I am working my way up to hour long yoga sessions. I am resilient. I fail at these poses but keep trying.  I am able to heal pretty easily if I take care of my body. I am finally able to see what a miracle is my body.

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Oh, and I can give good cuddles. Look at him smile. That’s some good cuddling.

 

 

Back Baby Steppin’

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This is me socializing in the park. Even my lunch dates require exercise now!

There so many exciting things are happening in my life right now. I am volunteering at the library, getting to know new people, writing more and exercising more. I have not had an episode of pain in two weeks. I am delighted. My husband is relaxed and I am making very small progress on all areas of my life. I am cooking, walking, and stretching a lot more. I am in the zone.

Something that is helping me besides being pain free for two weeks is this new deal I have with myself. If I do not write at least an hour a day, then I have to forgo my modem and give it to my husband to take with him to work. Without the router I have no internet and no TV because we have no cable. So I have nothing to research with while writing or entertain me while I clean. This is an even bigger motivator to jump start myself than the writing I am already doing. Once I get writing I get more excited about the writing. So this is just a jump start to get the fingers moving! It has worked. This week I have written every day.

I have also met my pedometer goal every day and done yoga three times. I even tried to do a yoga video called Power Yoga with Rodney Yee. Rodney Yee is a yoga instructor born in my native state of Oklahoma. (I just found that out!) He is a very handsome man who apparently only owns pants. These pants are made of spandex and are usually neon colors. I like his calm voice and dulcet tones, but I think I want to branch out. I think that I need something called Half Power because I had a lot of trouble doing those yoga moves so quickly. Downward dog –Upward dog — Downward dog –Upward dog —  Downward dog –Upward dog — Downward dog –Upward dog — Downward dog –Upward dog…sweaty sweaty sweaty sweaty but I was done when he got to Half-moon pose and fell over because my knee didn’t like it very much.  So I stopped but was proud of myself for attempting and making it about half way through. It’s been a long time since I even put in an exercise DVD. Actually I think last time I put a video in it was a VHS tape.

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Lynne my library lunch date!

I am also cooking more so my husband and I are eating fresh vegetables and fruits. I got back into making smoothies and eggs with veggies for breakfast. Leftovers for lunch and for dinner I am cooking fresh salads, veggie filled pastas and I make delicious veggie tacos.  I am not saying I haven’t had weird pizza roll dinners once or twice but I have been making great strides to getting my healthy habits back.

It feels like I am just bragging in this post but I feel as if I must after what I have been through lately. I am now looking forward to progressing but more importantly, the most encouraging development is coming back to the program feels inevitable. If I have to put my exercise plan on hold for a month because of pain and there be no doubt I will get back to it when I feel better, then that means I am officially a person who works out. It am not a poser. I am the real deal.

 

I’ve learned my lesson????

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A picture from the longest walk I’ve taken so far. I hope I rebound quickly so I can get back to this length.

I have been very angry. The kind of angry that just has to burn itself out because it has no release valve. I know that God is teaching me something I don’t fully understand, and I can’t promise it won’t be the last time I have to learn it. Over and over again I am reminded that I have no control over certain aspects of my life. I have no control over my uterus and ovaries and their near constant assault on my life.  I have no control over my doctors and their ability to relate to how much pain I am in, and very little control in what steps they will offer to relieve this pain. I have no control over how my loved ones react to my inability to accomplish my responsibilities. Worst I have no control over when the pain comes so plans are almost near impossible. I’ve been stewing on these things because I’ve not only been plagued by the normal endometriosis and adenomyosis pain but I got sick with pneumonia for a while. When I was in pain and also sick, I had time to soak in my anger and sadness. I didn’t have a lot of brain power to tell myself how lucky I am or figure out a way to make myself feel better about my predicament.

Sadly, my anger lasted a lot longer than the sickness. I get a little unreasonable when I am stuck in 700 square feet for more than a month. The only place I could go was the doctor’s office, and of course that was dreary. Also, coming out of one of these episodes feels like recovering after an ugly storm hits. Luckily I survived but now I have to rebuild. Working in a creative field takes a certain frame of mind, and the intermittent pain interrupts the process because I can’t think. So when the storm clears I have to get back my mojo so to speak. Not only that, but I have to go back and reread what I previously wrote and think about how to continue from there. The really messed up part is just when I am ramping up to start writing again, then I get another tornado of pain.

It is a mad rush to get up to speed and then try to make progress in all areas of my life. I have been trying to lose weight for years and that is another problem. I have been doing yoga and walking, but after this episode I had to start all over. I was up to three miles three times a week and three yoga sessions. After the episode I had to start all over and was having trouble doing the seven blocks to the library and the twenty scant minutes of yoga. It is like my body resets back to slack ass mode as a default.  My lungs get smaller, my legs get weaker, and I lose all the stretch I have gained in my yoga practice.

I am thinking about how often this happens to me and it still grates on me.  I know I am lucky. I have a great life other than this: a loving, fantastic and sexy husband, a deeply close lovable family, and friends that would give their ovaries if it meant I’d have no more pain. Bitching about this part of my life doesn’t feel right somehow. I feel guilty for being so upset, but a friend set me straight.

It’s okay to mourn not just for the loss of progress, but the lost time in my life. I miss out on time with all those people I love, and joy and discoveries while I am in so much pain. It isn’t just the progress I am making on my goals to be regretted; I am missing valuable experiences and moments. Time I won’t get back. I wish that I could just bounce back from these episodes as resilient as my fellow Oklahomans do after their storms. A high expectation but I still wish I could be stronger. What I wish is not really relevant because I still have to figure out a way to move on.

Unfortunately that means that I need to allow myself to just be upset so that I can move on. If I don’t just realize that I am going to have these feelings and not feel guilty about it then I can deal with the feelings and move on. This is my reality for now… Mourning it is okay. Feeling shitty about how my body has rebelled on me is natural and inevitable. For now I will have to just realize this is my life now. I will be going through this over and over again until I get help. I need to go with it and realize that rebelling against my feelings is just a waste of more time, and beating myself up about my feelings only gives me another reason to feel bad.

Part of what I am learning the more I go through this process in culmination with more and more yoga is how to be more kind to myself. Regretting that I am not stronger or what I have or haven’t done is not only a waste of time, it is mean. I am literally being mean to myself. It is like self-torture akin to pushing your own cuticles back but more insidious. I am as strong as I need to be to live and to get back up after being down and out for a month and that is a feat in itself. As a woman I was taught to be durable, as an American – resilient, and as an Okie – never to complain but sometimes those three things together make life harder than it is. Sometimes misery needs to be vented and recovery time taken. Rather than over and over pointing out what I can’t do or what qualities I like, perhaps it would be best to acknowledge how hard things truly are and that surviving is enough. My husband says, “Hey, you bled for a month and didn’t die-that’s extraordinary.”

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Seeing the quirkiness of Philly is always motivating to move more.

Is it Always Darkest Before the Dawn?

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Out in the city, sick as a dog

I have been sick and this is the first time in two weeks I have even opened my laptop. I am still getting over a super stuffed up nose, hacking cough, and my own brand of sickness induced asthma. It has been not so fun, of course. Something I have figured out is that being sick in a big city with no car is even less fun than normal.  The sickness was so bad that husband stayed home from work because he was worried about me wondering around the city on foot. I was dizzy and disoriented. I can only imagine because of the not breathing so well. So we walked to the doctor and spent two hours there doing a nebulizer treatment and other tests and then walked home.  Husband took care of me all week: making dinners, reminding me to take my inhaler, buying cough drops and medicine.

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I am ready for the ball

After that, to prepare for my hysterectomy I had to get an MRI. So I was out on my own this time sweating and huffing. Doing anything while I’m sick seems like an impossible task, but going to do the MRI was extremely tedious and weird. First off I walked to the wrong place, (perhaps my husband’s concern was not unfounded.) Also, I went at the wrong time. I had programmed the appointment at 4 p.m. but wrote down 900 for the address. So I went at 9 a.m. So I walked all the way there and back twice that day for no reason.  Then I put on the glorious gown (pictures included,) and they had to take my blood which is a horrible experience because my veins don’t like it. I don’t mean that I don’t like needles. I like needles. I used to get piercings. My veins elude them so they stuck me about five times and then put in an I.V. They put me in the metal tube and asked me to not move which was a minor miracle that it worked because of my stuffed up nose and hacking cough. Then as if it were a field readiness test for sick people they asked me to hold my breath for about thirty seconds at a time while shooting me with a dye that made me dizzy. I went home and slept the rest of the day.

I haven’t gotten the results because I was supposed to go in to the doctors for my biopsy and as I started to feel better from the cold I started my period so I had to reschedule the biopsy. I asked my doctor to call with the results but she hasn’t so I will probably have to wait until next Friday when they plan to do the biopsy again.  Brad says it is my ovaries fighting back because they know they are not long for this world, so I started screaming at them, “You’re going to be medical waste you bitches! You are not long for this world!!” While the past two weeks have been horrible and this period shows no sign of slowing, I am still hopeful. I believe it is only a matter of time now until I am helpful. Today I got back to my yoga and Thursday I went for a walk. I am also getting back to cooking. I am hoping the old adage is true. I hope I will see the beginning of health soon.

Why am I crying?

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Thank you Iheartguts.com I am so tired of those diagrams of my innards. If I never see it again it will be too soon.

I don’t know why I am crying. It seems so dumb because I got some relatively good news. I just left the gynecologist office where she told me that not only do I have PCOS, and a fibroid on my uterus, but I have adenomyosis and possibly endometriosis. I need to have an MRI and a biopsy and then I will probably have a hysterectomy and one of my ovaries will be removed. Basically the only cure from the pain is a hysterectomy. This means that someday in the hopefully near future, I will be pain free.
That’s good news right?

So this is weird that I am crying right? I left the doctor’s office and walked to the bus stop and started crying on the way. I felt so pathetic and weird. I pulled myself together before the bus came thankfully but I’ve been crying off and on all day. I am unsure why because I’ve been hoping for this for so long. I can’t even tell you how many times I have clutched at my crotch and cried to the heavens take these blasted ovaries!!! That was when I thought it was the PCOS causing this pain, which was what my docs made me believe. This is where I believe those doctors weren’t paying much attention to me, because my new Doctor, Dr. Lee, says that PCOS doesn’t cause as much pain as I am experiencing. There were many times over the last ten years that I have told my husband that I wanted to cut out my female organs myself. I am fairly certain I came close many times. I can be determined and bull headed. I was in so much pain that I had a few moments where stabbing myself in the ovaries seemed like a valid plan to get someone to finally do something about the pain. That is how insane the pain made me.

I feel like it still is making me crazy. I don’t even understand my feelings right now. I am not unhappy that I finally found a doctor who listens to me, although rather curtly. I am not displeased with the idea of surgery.

I have waited and worked so long for this. I have had at least five of those vaginal ultrasounds, countless pap smears and exams, and many frustrating tear soaked conversations with doctors. There were two emergency room visits where I left filled with morphine that didn’t help and no closer to answers. I’ve had relatives over and over tell me to get a hysterectomy even though no doctor would agree to it until now. I have worked hard to get to this point. I am exhausted.

There is still so much work to do. I have an MRI, and a biopsy, and several other appointments. I have to prepare my house, and cook some good food to freeze, and then I will have to recover. I am right now researching the surgery, recovery times, the hospital, and the surgeon etc. There is still so much work to be done before I put this behind me. I am not done. I am far from done. It’s not like this is the only thing I am doing either. I am lucky right now because I have no job, but I want one. I want to write, teach, volunteer, and go back to school. My head is swimming with all the things I want to do and need to do.

Plus I am living in a large city I have just barely made my home with only my husband for support. My family is either in Oklahoma or Idaho. I feel very alone this way. I am not discounting the comfort and love my amazing husband has provided, but do to the nature of the problems I have been having I really do miss my female family members terribly right now. I am wondering why the hell did I move so far away??

Maybe it is the fact that not one but all of my sexual organs have something wrong with them. I mean I should have been born a man, because my body is clearly rejecting all that makes me a woman. I have not ever really thought of myself as someone who clings to that bullshit, but it is almost obscene how ridiculous it is that EVERYTHING is wrong down there. Having these organs out won’t make me less of a woman. I am not mourning the loss of my femininity. I don’t see these organs as having anything to do with how much of a woman I am. I am a woman because of the cultural significance of my outward body more than anything. I was raised a woman. I care for my family and friends as an Oklahoman woman would. Truly, I believe my actions prove my femininity more than anything. However, as a lover of gothic literature, it is not lost on me the idea that my female organs are sort of eating themselves.

Perhaps I am just used to complaining and seeing the hard times coming. Perhaps I am relieved. Perhaps it is the hormones or maybe I am just exhausted. Whatever it is, I am hopeful this is the last time I cry over my health.