All the black circles you can see are cysts. Some are simple and follicular (PCOS), a few are not. The big one in the bottom left is not. I have been in so much pain the past 24 hours, I’ve sat out of conferences and just curled into my couch. I am so tired of all this. But I promised to document my journey, and so here I am. Tomorrow I go in for my follow-up, where hopefully they’ll give me something other than Ibuprofen or Naproxen for this bullshit. It’s excruciating. I haven’t slept in two days, I’m dehydrated, and I’m just so exhausted … I hate this. I can’t wait for this to be over. I want my life back.
So let’s summarize the things that most of you (that follow me on Facebook/Instagram/Snapchat/Life) know, and then I’ll catch you up on the news.
1) I began losing my hair (head, lashes, brows) in September, and though we suspected, we didn’t know why. Thus, the brunette wig you all are so very fond of made its appearance in December when the sparse/bald patches came more frequent, patches fell out more aggressively, and I just wanted to give my head a rest. I love wigs, I’m a drag queen inside my head anyway, it’s no big deal. My hair *is* starting to grow back … kind of. My brows are hopeless 😂 But there’s pencils and things for that.
2) Since the day I had Lucy, I lost 100 pounds. Most in the last year-ish (about 70 of it). At the time, I thought it was a hormone specific diet I was on, along with daily exercise (probably partially true).
3) Everyone knows I have Endometriosis and PCOS – I was formally diagnosed during a surgery in March of 2012. Most is documented on this blog in the archives. Including surgical pictures, if you’re so inclined.
4) Since the summer, I’ve had phantom pains that shoot down my legs. They’ve turned into extreme cramping and mind numbing ovarian pain. Along with my hair loss, and other symptoms I don’t want to discuss yet, after 3 months of waiting for an appointment – off to a new specialist I went.
5 years ago, I managed my conditions with surgery and medical suppression. Endometriosis essentially feeds on Estrogen, so a chemical menapause with drugs called Lupron, Noethendrone, Metformin, and some kind of progesterone (I can’t remember the drug name) was my personal version of hell. My Dad was my savior and a saint during this whole ordeal, and even made my surgeon a Steelers cap. I love him so much.
At the termination of the treatments, my system jump started and I, somehow, got pregnant with my beautiful daughter. One in a million, truly. I don’t want anymore biological children, I just want this all to be over with.
And so we’ve arrived at the new news. After seeing an Endocrinologist and an Endo/PCOS specialist, my Endometriosis has spread in an agressive manner (the cells have mutated), and my PCOS is in full swing again. I can’t freeze my eggs because the drugs would accelerate my Endometriosis, and it’s already covering my bladder/kidneys. It has also mutated. Yeah, heavy stuff. Not really ready for the big words yet, but I’ll get there. 5 years is the standard for suppression to run its course, so I’m not surprised, but …. I don’t know, I was hoping that it would get better with all the great changes in my life, but here we are.
Because Endometriosis is estrogen fueled, I could have a laparoscopic procedure to remove the lesions, biopsy the areas, and have another round of complete suppression. But obviously, there’s a risk of it getting worse, spreading, and therefore having back-to-back surgeries and then more aggressive treatments I don’t need.
The other option, which is the best option with mutated cells, is a total abdominal hysterectomy, and more biopsies/scans in the surrounding areas. The only problem with this is that obviously, it’s major surgery, and I’ll probably need supplemental hormones/scans for most of my adult life. Endo itself will not go away, but it would be a much more severely rare occurance, and I won’t float in between “is this just Endo this time, or is it cancer” again.
So here we are. I have two scans and a second opinion in about 24 hours that will tell us exactly which route to take and if the most aggressive is the most necessary.
Right now, I’m handling the manic up-down swings of emotion that come with hormone changes. I am exhausted all the time – I can’t even mindlessly play video games with my friends without dazing off. So I haven’t, really. Manic depression is so isolating – and it has given me a completely new point of view on what it’s like for my friends who deal with this every single day. It gets really dark inside my head sometimes. This has been happening since last winter. I cry at car commercials, I scream at my fan when it stops working, and I laugh when something isn’t really even funny, I tell people things that I should probably keep inside my head. It’s a really interesting ride inside my brain right now. These manic up/down swings should’ve been my first indication that something was wrong. I thought it was just life circumstance with everything else going on, but now I know it was a warning sign. I can’t control it, so I just kind of hide away and focus on what makes me happy: my work and helping people.
When it feels like the walls are closing in, I book more dates to talk to groups of kids with wide eyes and open hearts. I go spend time in the Air and Space museum where I’m reminded that there is something much larger than myself. Being in D.C. has been part of the isolation problem, but I’m hoping that I can get back to Kansas City as soon as possible – I’m much happier and freer there, that’s where I’m most active and engaged with life. I’m not lonely there. The kids – the speeches – they give me a greater sense of purpose and love. That’s what I need.
So that’s the update. That’s the news. That’s all I have. I’ll know more tomorrow/this week, but here I am. My sister Kathryn is coming to D.C. today and my best friend will be here on the 20th. I am more than excited for both – and I’m hoping I can keep myself going and distracted. I am keeping the perspective that I’m lucky enough to afford the medical treatment (the shots alone are $3k) I need. I have some of the best insurance in the world, and I have specialists and options, where many women don’t. I’ll always fight for those women, and this journey has given me an entirely new perspective into what this could have been had I not been so lucky.
So, there’s no eloquent way to end this post so … I just … Will.
Before I begin this, I want to say clearly and firmly that these are my words and things I personally witnessed and experienced. There are public court documents to support at least one of these stories, and they are easily accessible (because I know he’s going to attempt to refute this). I have four sisters, each with their own stories, but those are not mine to tell or expose. I do not wish to cause them pain by telling our story, but I cannot hold onto this any longer – and the person responsible has not been held accountable in any way. As a parent and child advocate, I can’t sit on this, it’s not right, and this story needs to be told. There are many more tales from my home, but those are not my stories to tell and I do not wish anyone to harass my siblings or cause them any more pain. Do not contact, tag, or bother them. If they care to share, they will. If they choose not to, respect that. I am going to try to do my best to do the same as I share this with you. Sisters, please forgive me. I love you. I am sorry, and I hope one day you understand.
Our number one goal as parents should be to give our child(ren) a childhood they do not have to recover from. Sharing this is part of my long recovery, and making good on a promise to myself I made many years ago to finally share this here. I am nervous (more so about my relationships with my sisters after this – I hope they understand and can forgive me), angry, uncomfortable … but here we begin.
“Violators cannot live with the truth: survivors cannot live without it. There are those who still, once again, are poised to invalidate and deny us. If we don’t assert our truth, it may again be relegated to fantasy. But the truth won’t go away. It will keep surfacing until it is recognized. Truth will outlast any campaigns mounted against it, no matter how mighty, clever, or long. It is invincible. It’s only a matter of which generation is willing to face it and, in so doing, protect future generations from ritual abuse.”
― Chrystine Oksana,
On the outside, we grew up in an affluent suburb of Kansas City. We lived in a gigantic house and for the most part of our lives, we didn’t want for much. On the inside, a much different experience. Due to a story for a different day, I lived with my mother, step-father (my other sister lived with my real Dad), and 3 of my sisters. I was the only one of the 4 whose father was not my step-father. My step-father was a physically and emotionally abusive man. He was 6’7, a huge man, who used his dominance to scare and physically/psychologically torture us. He is a smart man – with tendencies that border on sociopathic, as all abusers do. He was a member of the community, he was on a first name basis with many of the police in my hometown because he was the regional director of a martial arts program that hired a lot of policemen as instructors. He was an active member of the church and the church band, he played his role really well (as you well know, abusers often do). People generally liked him, he seemed like a nice guy. But they never met him when he was mad …. that was the monster we lived with. I will detail specific instances below, but I needed to set the scene.
Also: Keep in mind – during this entire time, I told adults at my family’s church and their friends about the instances of abuse and THEY DID NOTHING. Trust me when I say it would be easy to reveal names, but I’d rather contact them personally. I was a scared little girl and listened to adults who knew better than to stay quiet. It’s infuriating.
When I was a legal adult, I took every chance I could to get out of that home. I worked a million different jobs to afford myself out. I was in a relationship for 3.5 years and his family became my safe place (thank you B & G for this, endlessly). After that ended, I hopped from house to house to find safety in people. I wasn’t until I met my biological father and sister … and then had a child of my own – that I truly felt safe enough to even write all of this down. I’m still terrified of him.
Over the years, he has gotten my address from members of my family. He has sent birthday/Christmas money and gifts, all of which have been donated to shelters for victims of domestic violence, or used to purchase items they need. I have never outwardly given him my address, as I want nothing to do with him. I’ve been nice, but now I am done. I thought the “return to sender – do not want” was clear enough message, but apparently it was not. Upon the most recent purchase of my new home in Missouri and residence in Washington, his wife was asking around for my address, always commenting that she “couldn’t wait to meet Lucy” …. as if that would EVER happen. My conclusion is that she either was unaware of what happened to us as children, or (as many do) think that he’s changed and does not care. I wrote her the following letter and promised to make it public if she attempted to contact me. And now, here it is. I also included more specifics of memories as they’ve returned by writing this and discussing it with my family members. Repressed memories are a very powerful thing.
I am sure that you are a very nice woman, (I’ve heard lovely things about you) so please do not think I raise any fault with you on this subject … but I’ve heard that you and your husband wanted to send Lucy something and I needed to address it.
While I appreciate the occasional gift and card for my daughter, I would much prefer to never be contacted by you or your abusive, psychopath of a husband ever again. My sisters adore you, and they’ve processed it in their own ways, which I respect more than you know because I still cannot … and as the oldest, I will never forget or forgive. I hate him in ways that are inexplicable with written communication. He, frankly, is lucky to be walking around with the rest of society after what he put us through.
When I was a little girl, I witnessed that man grasp my sister’s throat, lift her in the air, pinning her (A CHILD), against a wall in retaliation for not picking up one single toy off the living room floor. She was barely old enough to pronounce her name, and he left bruises on her neck. I was pinned against a fridge with his knee, by my the back of my shoulder for not closing the seal properly. When I was in elementary school, I lost my mother’s umbrella in a wide gust. As punishment, he locked me outside of the house (I was 8) in the cold rain for 4 hours, as I searched the streets for it. I once refused to write Bible verses (?) and he lifted me over the banister while my hands remained stuck and strained through the railings. While I was in a wheelchair from a hip injury, I was able to balance on the kitchen stool to do my homework – he was upset that I left a drink in my bathroom and punched the stool out from under me, causing me to fall 4 feet to the ground. He did not help me up. I remember the heavy sounds of his footsteps in our home sending me into complete panic attacks. He would aggressively grab me and my siblings by the arms/legs and scream loudly into our crying faces. Always over something small or a misunderstanding. The sound of him dragging my siblings into his room by the arm/leg/shoulder and slamming the door, along with hits and strikes will haunt me for the rest of my life. This was not spanking. This was physical abuse of a child. I will not back down, I will not take this down, and I will never say otherwise.
The abuse did not end with bruises and imprints of hands. Most of the difficult pain to heal is emotional and psychological. I have always had issues with speaking to men or looking them in the eyes when I speak to them. I was made fun of in school for it constantly (and still am sometimes as an adult). I mean, hell, I wet the bed until I was 9 years old because I was too scared to get up in the middle of the night because when he’d hear me walking, he’d come stomping out (see above trigger with his stomping), yelling, and I’d fear getting beaten. He told me I was stupid and selfish. He told me I was not worthy (there ensued years of me dating abusive, controlling men – in exception to two very kind and amazing men who I still love dearly – including one who saved my life and ended the cycle, and I am forever in his/his family’s debt). Seeing his face online or hearing his name in passing gives me legitimate anxiety attacks and intense flashbacks to years of psychological and physical abuse (why he’s blocked on Facebook and phone).
I’ve heard that you say he’s gotten better, which I’m sure is great for *you*, but it will never change the fact that he was a GROWN ADULT MAN in his 30s and 40s, beating children to the brink of deep psychological fear and damage. That type of monster lives inside a person for life, it doesn’t mysteriously disappear. I have held off on writing this to you because frankly, I’m still in the victim mentality of fear – and most of the worst was something that happened in front of me, but not to me – I hid in my room every time he was home, to the point of hoarding canned food in my closet so that I wouldn’t have to come downstairs and see him at dinner. There was a particular instance where I had saved up every penny I made working 50 hours a week (I was also paying my way through college and Paramedic school at the same time) at a coffeeshop to fund the makeup I needed to compete in pageants ($400+ is a lot to a 20 year old). One day, I spilled a quarter-sized (quite literally, I still have a picture of it) blot of eyeliner on the carpet. I left a note offering to have it professionally cleaned and left for work. That psychopath took every bit of the makeup I saved and worked so hard for … and THREW IT IN A DUMPSTER. I had nothing. That collection was everything to me. It meant months of waking up at 3:30 in the morning and working into the afternoon with no breaks. How could an adult man do this to someone he supposedly loved? When I was in Argentina, he sold my car (same instance of working my ass off) for parts without asking me because it was a burden to have in his garage. This is a man filled with so much hate and ugliness, he doesn’t deserve an ounce of love for the rest of his life.
Frankly, instead of funding his PhD (which I’m surprised if they still grant him after they read this and background check the court system), he should be paying for the years of therapy we’re all due. But we all know he’s too selfish to ever properly right his wrongs, and I refuse to pretend like it never happened to get $50 and a weird card on my birthday. Every cent you all have sent has been donated to a charity for domestic abuse victims in Kansas City, it’s been that way for years (the girls know).
Please let it be known that he will NEVER meet my child. He will NEVER see her beautiful blue eyes in person or hear her sweet voice in the morning. He will NEVER know what it’s like to watch her sing and dance in this house full of love, beauty, and happiness. She will only know that he exists so that she knows the kind of man to avoid and end the cycle. My Dad, my REAL DAD, treats her with the love, compassion, and whimsical spirit she deserves. Your husband made my Dad out to be a monster my entire life (sounds familiar about what abusers do to convince their victims, right) – and that caused me to miss out on the most amazing man the world has ever known. Luckily, Lucy does know him and he is there for me in ways your husband is and never will be capable of.
I know that you’re aware of the house of horrors we grew up in, and you’ve probably rationalized his new demeanor and loved him despite the monster that lies dormant inside. He is a true sociopath that can convince people of anything and will no doubt say I’m exaggerating or lying (I have no reason to, and I also don’t care because he’s not in my life). There is physical proof in the public records that Missouri keeps online. Feel free to fact check me anytime you want. I write this in case you ever sit and wonder why (some of) his daughters want nothing (or sparingly) to do with him, keep him at an arm’s distance, and limit the interactions between (some of) their children and himself. I personally refuse to forget or forgive a child abuser. That’s where the line is drawn for me.
I hope he never does to you what he did to us. Really and sincerely. Thank you for being kind to my daughter, despite my endless contempt for your husband. This letter will be public in a week or so, but I will omit most about my siblings because that is their story to tell (I’m sure you understand). Be well.
I never truly understood my obligation and duty as an adult until I had a child of my own. It’s true when they say that it puts your entire life into perspective, and puts nearly every life choice into a place of reflection. You even adopt a point of view for the choices your own parents made. Some of us sit in awe at the hard work and sweat our parent(s) put into raising us, and some of us live between a weird state of anger and confusion. Either way, the most you can do is better. In every way. Even if your parent was the perfect example of love – surrender yourself to better.
If you don’t have children, I ask that you commit yourself to protecting them when you can. Protect their innocence, trust them when they say they’ve been hurt, and then do something about it. Our society needs a whole lot of healing, and it would help if we started with much fewer damaged adults.
“Many abused children cling to the hope that growing up will bring escape and freedom.
But the personality formed in the environment of coercive control is not well adapted to adult life. The survivor is left with fundamental problems in basic trust, autonomy, and initiative. She approaches the task of early adulthood――establishing independence and intimacy――burdened by major impairments in self-care, in cognition and in memory, in identity, and in the capacity to form stable relationships.
She is still a prisoner of her childhood; attempting to create a new life, she reencounters the trauma.”
― Judith Lewis Herman,