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When Science Fails Us: Funding says Endo Sufferers are Hot AF but Zero Help Looking for Cure

Fifty or so years ago women (more so than today at times) were treated as housewife and baby maker. We weren’t taken seriously. We were heart shaped -asses and, loin of pork making domestics whose opinion was worthless. Working women with families…well forget you. You were awful for choosing work over the family over your HUSBAND. Who would make his ham? Who would fetch his Sunday paper? Your looks needed to be up standards because seriously…who wanted a homely wife? The little woman needed to be feminine but not slutty. Sexy but not whorish. Getting birth control as a single woman caused great concern. Beauty and a thin waist was life.  At this time science was coming to the forefront too, concerns about the effects of smoking and heavy drinking did to you. Everyone smoked. Pregnant women, people in the office, and people on the train lit up.  Life was for the living. Sure we can take a page from Mad Men’s Mr. Draper’s book and live like life was going to end tomorrow. But we grew wiser and more conscientious about certain important issues such as women’s health.

As someone who has endometriosis, I’d much rather my health reflect 2019 and not 1959. I do have a love of red lipstick, sweater that hug all the right places and my great grandma’s cat eye glasses. But fighting for a cure so me and my fellow #endobabes and #endowarriors don’t have to suffer any longer is vital to me. Which is why THIS atrocity of a study makes my blood seethe. Someone thought it was important to fund…yes put money into a study about how women who have endo are more attractive than other women. As if this information means anything. As if it helps anyone. It is demeaning. It is isolating for us who have it. So who gives a fuck if Sarah is pretty but hospitalized because her ovary was twisted and exploded beyond repair. And who cares of Melody can’t ever have kids because a doctor had to scoop out all her reproductive organs. They are pretty. They look good in jeggings.

Are you FUCKING kidding me?

Our disease can hold us back in so many ways. We have lost jobs, babies, relationships, our self-esteem and you Mr. and or Ms. Scientist have wasted time, energy, and funds to say “but hey at least you’re cute”?

I call BULLSHIT. Hell, I scream it. Does anyone care if your brother with cancer is hot? NO. The man has CANCER. He is SICK. He wants to live a normal and healthy life. So get your ass in gear and your fucking head out of the sand and use your resources for something WE CAN FUCKING USE.

I can wear my poodle skirt with pearls and stick my combat boots up your ass. I am a woman who is saying loud and clear this study is shit. My fellow endo warriors are more than that. And shame on you for thinking otherwise.

Let Women Be Women

When I was told I had endometriosis the word that was bounced around was infertility. Thirty to fifty percent of us who suffer from #endo will have trouble conceiving or not be able to. I was one of the women who could get pregnant without any fertility help. I have talked to many girls in their 20’s who are getting hysterectomies because their pain is so unbearable. Their doctors recommend to take everything out. Then there are those women who are in so much pain that even if there is a small chance of having a child, their suffering takes precedence over anything BUT are denied because they are told they are still within childbearing years. We also know that just because you do take your organs out, doesn’t mean endo isn’t hiding somewhere else. That does not include those women whose organs have been fused together by endometriosis which render them infertile (if found to have affected reproductive organs). In our society, a woman’s identity is almost always tied to having children. We get asked when we are getting married, then when are we having children. Then once we have a child, when are we having another one. We can’t even give birth yet without people asking when is the next one coming. The next one? Can we get the current one out first? After my third child, I got a tubal ligation and my husband got a vasectomy months prior to me giving birth. I had one nurse after my c section asks this famous question of when I’m having the next one. I told her I was done and she said to me that I say that now but I will surely change my mind. To which I replied back I was cut and burned and my husband had a vasectomy. Therefore no, we would not be having a fourth child. This woman kept telling me I would change my mind. And while I know there is a small percentage of women who can still get pregnant after both were surgically sterilized, my insistence of not having another one kept flying past her. Was she seriously getting into an argument with me about having another child? The one I was holding was barely 12 hours old and already I was being told my mind would be changed by somebody else.

Women are also construed as selfish if we chose not to have kids. What about the women who can’t? I have been made to feel guilty for having kids by a few people. How about women who have no desire to become mothers? They are told they are selfish. Do people say what is wrong with a woman who doesn’t want to have a child? We are made to feel guilty no matter what our choices. We already have the world on our shoulders without having to have extra stress about our bodies which is nobody’s business but our own. Financially it is a nightmare for many of us. We make too little to support a family even when are working. The government says we make plenty. We go and get assistance and we are deemed as lazy or unfit because we need help. So many of us wait until we are older which causes complications for our own bodies and the children we carry. Why are we made to look terrible if we ask for help? If there is an income flowing in and out of my house I should not have to be questioned if there is anything I need assistance with like rent or health insurance.
I do not like when people make assumptions about me or my situations. In fact, you don’t even have to make assumptions you can ask me. If there something I choose not to share it’s quite simple I just won’t. But myself, like many of you, do not like it when people just assume about my situation without knowing all the facts. You need to do what is good for you, not listen to your mother law beg for a grandkid or people who are convinced to pray for a miracle. Your suffering means something. You shouldn’t feel guilty for being confused or angry about all this. You have the right to sob endlessly about the choices you face. The point is not to let anyone convince you they know better. Be strong warrior. You got this.

Distractions

Lately I feel swallowed up by life. It keeps overwhelming me and there isn’t anything I can really do for it. Well I CAN but sometimes I just need to be grumpy. Don’t we all? I can be mopey and reserve my pity party of one. And sometimes I do. People who once supported me in my endeavors have faded away. And while I find myself sad by it, I have to realize I myself am the only who who can persevere through it. How? I honestly have no clue. The hands I held for security are gone. So I must hold my own. When you are stuck in a rut you may find yourself looking around for someone else to toss in that life jacket. I am slowly learning I have to learn how to swim. If you are lucky enough to find your saving grace you grab hold.

There are soooo many ways people tell you to hold your own. Don’t feel sad. Don’t be so upset. Cheer up. But while you flounder during your path to find yourself there are things you can do to cheer yourself up. For one, I read. Escaping in someone else’s world even for a while can help you push some of that negative crap away.

Take a drive. I find a neighborhood with those great old Victorian homes and I gawk. The architecture, the history…it is all.amazing to me. But don’t gawk too much. You don’t need to explain to the cops you’re just staring at people’s home. Akward.

Binge watch something. Sometimes you need to shut your mind off. Recommendation? My new Netflix fav “Nailed It!”

Arts and crafts. So what if you hot glue your fingers together? Go find your inner Martha and make something amazing. Or something awful. Just make something. Go to the dollar store and let go.

Bubble bath. Bath bombs are amazing. They are fizzy. They smell great. What’s not to love?

Cook. I recently baked banana bread. Grab a subscription (I love Blue Apron) and cook something. It occupies your time and you create a gourmet meal that’s insta worthy

Don’t count on other people to make you happy. It’s not cynicism. Ok maybe a bit. But YOU count too. It is OK to be a little self absorbed once in while especially when you find yourself stretched thin with work, the kids, and all those other responsibilities. Distract yourself in a good way. There is nothing wrong making yourself happy.

#Shame

So recently I’ve noticed a trend which I know has been around for a long time but in recent days and weeks, I’ve seen it more. Shaming people for being themselves. Most recently I have witnessed woman shaming among other types but this was super recent.

So the story: A picture or status would pop up on a mutual friends social media and some of us comment on it and we will be banter and argue and sometimes it does get heated. But in the past we have all said our opposite opinions made for good discussions and we respected each other. We all need a good discussion based on our views. And it’s great to share our differences and a little heat in the conversation is always welcome but when it starts to catch on fire it’s time to put it away . Anyway, I’ve noticed not just with me but other women are being called “sluts” or even “cunts” and more recently “liberal/feminist cunt or slut”. We are told to be quiet because we are women. And the worst part is not just being called such names but after the conversation has ended a day or two later this person will come back and keep name-calling. And if we continue spouting our opinions we are then called a “feminist ____” immediately followed with some more derogatory words. Why should I have slanderous words flown at me because I have an opinion just like somebody else does?

Slut. Bitch. Whore. These are the words that stick to us and stick inside us, in our guts and dig at our confidence. My opinion is worth just as much as yours and vice versa. When people say horrendous things and spout them as facts you then know there is nothing you can say that will get through to them even just being pleasant to each other. Even showing statistical data suddenly “the government is going into the internet and changing all the information to suit their needs”. I was shamed a few weeks ago when some women came to our house to discuss their views on their religion. When told we do not practice that religion they then said everyone makes mistakes. You can share your views and we can discuss the differences and what we believe in, but don’t tell me I made a “mistake” because I believe or don’t in something. Women vs women in the name calling department is awful. We should be able to have our own differences but unite based on the fact that we share many things together and embrace our differences. But when you hear such disrespectful talk coming out of a man’s mouth, that goes even beyond machismo and mansplaning…it is frightening. Sure they are only words and that is true, but our history shows that entire nations can be moved by what comes out of even one person’s mouth. Verbal threats can drive-through a woman just as badly as a fist through a wall. It’s more than just feminism or a so-called liberal point of view, it’s speaking with such disgust and hatred that it just drips out of your mouth with toxic distain. Of course you have freedom of speech to back you up and if that’s how you really feel about the people around you whether women, men, or whomever you speak of then it is of course your right. But then don’t become aghast when people fight against it or have equally strong opinions that you say “do not count”. If you choose to accost people with your words then be ready to have those same people defend themselves.

I am OVER the slut shaming. The woman shaming. The “I have a vagina” shaming. Religion shaming. In a recent social media conversation displayed, someone said that women invite rape if you drink too much or dress a certain way and it is your fault if you are a victim. Now we are victim shaming women because let’s see… my dress hem might be a little too high?? My lipstick is too red? If you decided to go to a party and drank a little too much and you are assaulted then well…it is your fault because how dare you try to have fun at a party and trust that your life isn’t torn apart by someone who wants to hurt you! I get stay at home mom shaming and when I worked I got shamed into that too. I am told I am lazy for having a chronic disease I can’t help because there are days I can’t do anything more than get up and get dressed. I have witnessed awful comments about people’s sexuality in a negative way if they support someone or something another person does not approve of. There is too much SHAMING and it is EVERYWHERE.

If you must call me a liberal snowflake feminist whore, then go right ahead. I will not let your words show me who I am Or my tribe of women, men, LGTBQ, or ANYONE who is shamed for being who they are. You can have your opinion of me. But you can’t DEFINE me.

Torrent

It has been a while since I wrote poetry. People who don’t suffer from #chronicpain or #endometriosis or anything mental or physical don’t really understand how it feels. I can only express it through words.

“Torrent”

Werewolf or Moon Goddess?

#Halloween and #DayoftheDead have passed but I still feel a bit…#witchy

I currently wrote about how the moon may affect our Cycles as women. If you are like me then everything in that infinite sky above us fascinates you. Especially that large, white orb that is nestled in the velvety blackness. Can the moon tell our bodies what to do and how to feel? I always felt a connection with my #endometriosis. Every time I would feel crippled with pain, that moon would be shining bright in through the window. Can the lunar cycle be tied with our own? Do we become more creative, desirable, or even tired depending on what phase the Moon is in? Perhaps the next time the moon is out stop and think about how you feel. You never know what you may turn into.

1 in 10

I went for a normal exam at my lady doctor. I am here now 2 days later in some of the worst pain in my life. Just keeping up with my health is giving me pain. I have a job, three kids, a husband…a LIFE. And a part of it has to be disrupted by #endo. You may not have any health issues (and I hope you do not!)but if you do you may understand the frustration of it all. Waking up and never knowing if today you will be able to function. Or is it a day you spend hiding under the covers on the couch?

1 in 10 women have #endometriosis. I am part of a great community but we are bound by pain and suffering. We could make our own country with the number of #women who have #endo. Maybe we should. Then at least we could have doctors who don’t dismiss our symptoms or family members who tell us to shut up and deal with it. We need to fight for a greater quality of life. I’m still fighting for it. I am fighting for my daughters and my #endosisters and #endobabes. What are you fighting for?