Tag Archives: endobabes

#ButYouDontLookSick…But You May Look Like Shit

Revised

On the online mag all about endo I write for, Do You Endo published a piece I wrote discussing the makeup I like to use. It also explained how people have treated me during my 26 years of dealing with this disease. Rereading has made me realize that there are so many people out there who cover their faces with layers of concealer just to please others. I am one of them. I do it because I really love makeup. Yet I also do it because people can’t keep their pieholes shut about thibgs that don’t concern them. Trying to explain to co workers I was home sick but not contagious was exhausting in itself. I have had people leap away from me when I arrived at work looking green faced from not just endo but actually being sick. No one believed I couldn’t spread it. And none of them believed I was sick at all.

I began to tell them I had an actual sickness that was contagious like the flu.

Endo affects your immune system. I can get fevers when I get a flare. And during my period I can get one of my famous three day long migraines. I am bleeding, puking, and shivering from fever and I definitly look the part of sick girl a lot. So I bought a bunch of makeup. All because people had opinions about my sickish glow (and I was tired of their shitty comments) I put makeup on for them, not me. But the unwanted comments continued anyway. I spent my mornings applying my lipstick, I winged my eyeliner, and highlighted my cheekbones. However instead of being told I look “like shit” I got the “but you don’t look sick” comments. So when I told people I was sick they didnt believe me at all.

So I don’t wear it…I look ill. But I do wear it…I dont look ill enough to take seriously. And that is really the point I was making. Sure makeup to me is fun and I like wearing it. But I stopped wearing it for them and wear it for me. I mean no one at work cares as long as I get the job done. The kid at the supermarket doesn’t care as long as I pay for the food. So I wear it for me and me alone. People get offended when others don’t look presentable enough for their standards. We used to get dressed up to go to a Broadway show or if we went out to dinner. Now people don’t get dressed at all, or to judgemental people they don’t make an effort. We were really dressing up nicely for ourselves because when you’re in a dark theater who the hell can see you anyway?

The point is do it for you. Or don’t. It is YOUR choice. Someone is going to have an issue with you reguardless. Might as well be happy with your own choice.

My Prism Child: Finding Out Your Child Has Autism

My son was born a day shy of 38 weeks. I was at work and felt my stomach tighten but no pain. My co worker suggested I go check it out since I was so close to my due date. I called my gyno and she said it was probaly not an issue but I should take a trip to labor and delivery just in case because you never know. To be honest I was glad to; being pregant with a chronic illness is a nightmare though you get a prize of a cute kid at the end. But no amount of snips of snails and puppy dog tails (which is gross by the way) could help me ignore the 9 months of dibilitating migraines and bleeding lesions inside while cooking my baby. Was it worth it? Of course it was. I would serve the Devil himself to have my kids, especially when infertility with endo means many women can’t have children. Having a chronic illness is tough as it is. Then throw growing a human in the mix and it can get rough at times.

In February my son was born. He was perfect in every way. He was checked over by hospital doctors and our pediatrician and given, as my mother says, a clean bill of health. My husband and I were over the moon for our little man. Our daughter wasn’t so thrilled there was a new kid on the block. But now you would never be able to tell. They are the best of buddies. I’m not just saying that either. When she comes home from school (they are four years apart) he screams “Emmie!” and they hug so tightly they fall over. My son loves grabbing us and saying “family hug” and squeezes us with his insanly strong three year old arms. While he avoids his baby sister (for now) he curls up with us for movie nights and because he loves to cuddle. He love animals and dinosaurs and can name what seems to be every animal in the sea. But many of his words sounded garbled and when we call his name many times he ignores us. He loves lining up his cars and separating them into their designated colors.  He throws tantrums that could bring a UFC fighter to their knees and it is hard to soothe him. I’ve spend over 12 years as a preschool teacher, 5 of them with three year olds. I could spot things with my students. That was seven years ago but I still knew milestones and behaviors. Eveyrone knows boys fall behind girls in many areas. He was just frustrated because he may had a delay in speech. My mom thought he had a hearing issue which would explain his frustrations with talking and being understood.

“Your son…is on the spectrum.”

My husband and I heared what my doctor said. My mind began to race to every behavior, every struggle my son had. And it all fell into place. Now it made sense. I felt strange. I can’t describe the feeling other than that. He did a lot of repeatative behaviors and I never noticed they were more than just normal little kid habits. I watched my son play with the trucks in the doctors office. I realized they were all yellow and all angled in the same way.  Kids his age did that anyway but this, my doctor said, this was different. I called the school system earlier in the month to get him evaluated because we knew his speech was delayed.  I guess it was there in my mind, hiding in the back. It doesn’t take anything away from how we feel about him. He is our boy. He’s still and will always be our baby.

Parents of children with disabilities already feel lost sometimes. I can’t always calm his tantrums. My oldest doesn’t always get that her little brother didn’t kick her on purpose while having one of them. But this same child runs to her and yells her name and wraps his arms around her. This is family. This is love. And this is what helps heal the aching of the heart when we are told our child is medically different than the rest. It doesn’t mean it’s bad it just means we have to adapt to him and his world.

People have been supporting us in so many ways for our son’s medical care. Many have contributed to him so this info is for those who asked to help out. For those who have inquired, paypal contributions can go to teamgrayson2016@gmail.com    We thank everyone for all support in all forms.

 

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.

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?