Weston and I admitted to each other that our hearts just weren’t in it. Weston was so afraid of seeing me sick and in the hospital again. I was so afraid of getting pregnant KNOWING the risk of miscarriage and thinking of how guilty I would feel if anything happened to the baby when I knew this in advance. It’s a really personal thing. Everyone is so different but for us it didn’t feel right to pursue fertility treatments or anything else at that time, with that information.

…it just broke my heart to feel so out of control of my own body and my own life choices. In a way though, I was at an advantage. Because so many women go into their marriages without a single doubt that they’ll get pregnant, then when they begin trying they’re shocked at the difficulties they face. I knew from the start. Weston knew from the start. He married me anyway and we knew we’d just take it one step at a time. He and my mom were incredible to me throughout all the emotions of chronic illness and infertility though. My mom was there for me at almost every appointment, she cried with me and let me feel the gravity of everything. And Weston was there to pick me up, dust me off, and reassure me that everything was going to be okay. I also dove headfirst into the endometriosis community on social media once I got my diagnosis and being able to connect with other women who completely understood what I was going through was super helpful too. We lovingly call each other “endosisters” and many of them had experienced infertility and also were a great resource for me…When I returned, I checked it and it had a missed call!! FROM OUR SOCIAL WORKER! I immediately stepped back outside to call her. In our county, we had been warned that if you miss the call, they will move on to somebody else because these children need placements so quickly in many cases! When I got M on the phone I was already in tears and she kept telling me to try to be calm. “Listen, there is a newborn baby being discharged from the hospital today and you and Weston are being considered as a match, are you listening?”… “It’s between you and two other families. The board is reviewing your homestudies and they’re expected to come up with a match within the hour but just in case you’re selected, I need to know that you are available to leave work and meet us at the hospital immediately,” she continued, “do you have a newborn carseat in the car?” I told her yes, we were totally available, our carseat was ready, and she said she would let me know within the hour if we were selected…

So we painted it [the nursery] light blue and if it was a girl, I was going to decorate with florals and if it was a boy, we wanted to do a mountain theme. Literally my first stop after M called us and said it was a boy was Hobby Lobby haha. I think I bought out their entire woodland inventory! Over the next few weeks we received a lot of gifts so it took a while before everything had a home and the room was complete, but it was really fun to watch it transform from a gender neutral space into a nursery specifically for Elliott.

 

 

http://www.lovechildmag.com/endometriosis-adoption-story-hope-love/

 

So long, succubus! Oh, hi.

This post existed in my brain for a long time but I put off writing because it causes me to dwell on negative energy.  But since I’m already dwelling anyway…!  Let us exorcise and banish thee, succubus!

The title existed before the post, before I shared with others I had cut ties with my best friend (I have several) of a decade, Juniper.  When I told my friend, Rahul, unlike others who reacted with shock and surprise (wow, no way, that’s pretty extreme, Nil, maybe you are the crazy one?), Rahul’s reaction was perfect.  “Oh yeah, she’s a succubus.  Good.”  VALIDATION.  Rahul has also encouraged me to write for more than a year and has a partner with Lyme disease.  Thanks, Rahul.

NEWAYZ…

As a mental health professional, adult working out childhood issues, INFJ, and empath who only remembers to maintain boundaries in her professional life, I attract Cluster B personalities.  I find them fascinating, fun, charming, and Cluster Bs really like me.  Many mental health professionals dislike the DSM, but after having a caseload of 500 clients at a community psychiatric clinic, I’m here to tell you that some people are textbook in their behavior.  I can sit down for five minutes with a client and check their chart.  Sure enough, Axis II.  Now of course, I believe all these people have PTSD and their personality extremes are due to their clever adaptation and survival of their insane, abusive childhood environments and now these behaviors no longer serve them as adults.  Still, I don’t want these people in my life.  But I let them in and cling desperately to them. There are some awesome self-aware Cluster Bs online, such as Sam Vaknin, and posters at psychforums.  I hate to use one phrase to clump everyone together, but for the sake of brevity, I am doing that.  If you’re not self-aware, I just can’t.

 

Juniper.  I wouldn’t admit it for several years, but I knew she probably had a personality disorder (PD), which I tried to excuse or work around or take a break from.  If you made me guess, I would go with histrionic or covert narcissist.  Richard Grannon has a great YouTube channel and website on managing contact with a narcissist.  There’s a lot of literature on borderline and narcissist personalities, but not as much on histrionic.  That’s why I like to clump them all together as Cluster B PDs because there are overlapping traits and a spectrum.  Not every person with a diagnosis will present as alike, although it is eerie how similar some are.

Guess what happens when you have a chronic disease or shit goes down in your life?  You have less energy and time to give others.  You become aware of your spoons and who in your life takes them and who gives back.

Juniper used to call me multiple times in a row until I picked up, or text me over and over to finish my meal so she could talk to me about a guy she wanted to hook up with.  I used to think this was because we were SO close and Juniper liked me so much.  Now I realize I was a vessel for narcissistic supply, one of her many best friends she cycled through.  (For a self-aware HPD’s insight on “fan clubs”, read here.)  I noticed in July 2016 I was giving a lot of energy listening to Juniper’s complaints about her separated husband who was threatening her life while she continued to hang out with him and hide that she was filing for divorce.  I set a boundary that I could no longer hear complaints about this situation until Juniper made a decision and moved forward.  Juniper reacted with sadness and anger: I would never do this to you!  I would be there for you NO MATTER WHAT!

This declaration was tested a few weeks later when Trent had a seizure at work and was not breathing for a few minutes until resuscitated by EMS.  Getting the phone call from my father-in-law was…I was in denial, but also very calm.  Let’s prepare to go to whatever hospital they send me to.  Trent may be dead.  Okay.  Let’s do this.  I only called my mother and Juniper initially to process.  But Juniper was too busy.  I let her know Trent’s ER visit was top-level important and she called and said: Oh my god, I am so busy and stressed out!  I have all these papers to write plus my real estate-

That is where I cut her off, relayed my trauma in five minutes, and then allowed her to talk about herself again.  I hung up the phone and decided I was done with her.  This was not an isolated behavior.  I brought up my grievances with Juniper in the past and she reacted defensively, promised to change, and did not.  I pondered what to do and the honest, loyal friend in me wanted to bring up my concerns and hurt and work it out.  Don’t act rationally with Cluster B types.  There is no winning and no closure.  Insight from a mutual friend, Shaw: No matter how well you prepared, there’s no way to be quicker to the draw than someone who is willing to weaponize anything within reach.

Luckily? I found out in August 2016 I would be having surgery and my friend, Camille, advised me to take care of myself and not say anything.  Sitting on my bathroom floor, painting caulk between the tiles as we drank bubbly and ate a gluten-free snack Camille brought for me, I thought to myself, why am I spending so much energy on Juniper when there are amazing people in my life who give back to me?

Surgery was an excellent reason to focus on myself and employ the grey rock method.  I didn’t have energy for anything else.  I’ve gone No Contact with a friend with borderline traits and it was not pretty.  I still get texts five years later wishing me a Merry Christmas if I forget to block her on a new phone.  I suppose that’s better than hearing what a fucking cunt I am?

 

I was nervous that Juniper would sense me withdrawing from the relationship, but seriously, chronic illness and grey rock go hand in hand!

Would you like to hear about my surgery recovery in boring detail?

Nah, I’ll just text that I miss you and love you every few days to cover my friendship obligations.

Oh, you want to get together?  I can’t drink on opiates, but you’re welcome to come over and sit on the couch with me and watch TV.  I’m available all day, every day.

I miss you so much!  Hope you’re feeling better!  Love you!  (See: lovebombing technique)

 

This could not last.  We would see one another periodically and I would be friendly, keep topics surface-level, engaging with her finalizing her divorce and discovering Tinder.  I was more aware of her impressionistic speech and irritated by throwaway comments such as, “You do NOT eat!  I know you do not eat!  You are too skinny!”  Rather than ignoring this, I would bite back, “I eat a lot.  I have an autoimmune disease which prevented me from absorbing nutrients.”  Smiles viciously, takes deep breaths, reminds self that Juniper struggles with bulimia and is projecting her own body dysmophia on to me.  I will say, I have seen Juniper grow and try over the years.  It’s just not enough growth for me and where I’m at in life.

After the second surgery in February 2017, Juniper became more aggressive about getting together, then would flake, and after several attempts to talk on the phone around her schedule, I texted: hey girl, I don’t have the energy for this.  How bout I see you when I see you, and that’ll be awesome?

Juniper did not think that would be awesome, reacted defensively, asked to meet so she could tell me how I could work on our relationship, while she would not work on our friendship because she didn’t have energy.  Great, we’re on the same page!  Let’s both not work on our friendship together!

And a rational person would stop there.  But the next day Juniper texted requesting a phone meeting so she could express her feelings.  NOPE.  I tried to explain I had things going on in my life she didn’t know about (besides being three weeks out from excision surgery) and I really needed to be selfish.  I was dealing with depression, possible infertility, and having panic attacks about this neverending dialogue.  I wouldn’t give her a chance to tell me the ways I was a disappointing friend.

Truly, you are a great friend.  The greatest of friends, great indeed.  Everyone should be so lucky to have you as a friend.

I blocked her on all social media, including LinkedIn (you know this shit is serious).  Juniper lashing out left the window open for me to summarize my list of grievances, tell her I was hurt, and that I could never do anything more than politely say hello to her in public via text.  Then I blocked her!  Or so I thought lol.  I ended up needing to download a buggy text message blocking app after I received a text a week later telling me she hoped I was feeling better and that nothing I did could ever make her not love me WTF FOR REAL.  Juniper lives in a world of delusion and that’s how she gets out of bed every morning and tucks away her immense self-hatred.  It has taken me a long time to arrive at a place where I don’t perserverate on Juniper’s behavior and not seeing her Instagrams helped with that.  I’ve gotten over romantic relationships more quickly.

 

Why am I talking about all this now?  A dear friend from my grad school cohort came into town and we arranged a time to go for coffee.  Trent and I met her baby full of fat rolls and I was holding said baby in my arms (I apologize for the hate vibes flowing through you, baby) when Juniper walks up and coos over the baby.   I stare down at the baby smiling and say hi.  Keep staring down at the baby so your smile is justified.  Babies are happy.  But then I realize she was invited (by my poor grad school friend, the nicest human in existence and a fellow counselor), Juniper is sitting down, Trent and I can’t escape her.  We’re going to have an intimate hang.  No, please.

I directly announced this was going to be awkward as Juniper and I were not speaking and the situation devolved from there.  (My poor, sweet friend.)  I was directly aggressive, explaning the why and wherefore, while Juniper made passive-aggressive comments to our mutual friend: She’s mad because I flaked one time.  She’s just like this.  I thought we could put aside our differences for the sake of our dear friend.  I don’t have the energy to spend time on stuff like this.  I texted you.  This is the only time I have to see our dear friend.  Why do I have so many good friends if you think I’m a succubus?  Shaw is totally my friend, he came over to my house and we had a great talk.  Okay, well Shaw isn’t speaking to me anymore because he was abusive and I needed to stop the abuse and take care of myself-

I see your victim bullshit and I am not playing.  You thought I didn’t reply to your text because I was paralyzed with joy at seeing you?  Trick, please.  I finally asked Juniper to leave us alone while we said goodbye.

Juniper: Sure, yeah, I’ll just go sit inside.  I have no hate-

Nil: Go away.

Juniper: in my heart-

Nil:  Shut up. Bye. Bye.  Leave.

(Baby remains in lap.)

In retrospect, this enrages me because the situation could have been easily avoided by Juniper honestly relaying to our mutual friend that I was not speaking to her.  Juniper created this situation and then acted as though she was surprised at my reaction and wanted me to suppress my valid feelings.  I have to keep it 100 emoji.  She never offered to leave.  I would have been forced to smile through her bullshit to make our mutual friend comfortable, catering yet again to Juniper’s needs, as Juniper siphoned the energy I reserve for myself, Trent, my pets, and all the friends, strangers, medical personnel, family, &c. who have shown me unending support and love in the past year.  Five minutes with her encapsulated the entirety of our dynamic: she takes, I give, and I have nothing left for myself and the people who deserve it.

What good can come out of this?  I’ve asked myself that a lot of times over the past year at stages in my diseases.  What is the meaning?  Why am I being taught this lesson?  This one is easy.

The silver lining of chronic disease is that it weeds out the people who are toxic, unsupportive, and draining your life force, real quick.  And then you’re left with a circle of love.

 

Tailbone pain and endometriomas

Mmm                    source: http://www.flickr.com/photos/18217472@N00/2797793602/

I had my excision surgery in February 2017 and have only been experiencing pain during the first days of my period.  I suppose I’m using this blog as a symptom tracker, although I also have an app for that.

It takes effort to make a cat NOT cute.

I didn’t know what the tailbone pain meant before I was diagnosed and Dr. Google wasn’t terribly helpful.  It feels like pressure on your tailbone/bowels almost? when you sit down and the pressure makes you want to jump up.  I’ve been feeling localized tailbone pressure the past three days so I assume the cysts are growing, as is their wont.  The eventual result is pain which spreads in a band around the lower back.  Helpful pain reducers (from the doula book) are: heating pads, TENS unit, counter pressure, double hip squeezes.  Trent will perform massage in public if I’ve been standing/sitting too long.  Don’t mind us.

I told myself I would get back to certain activities after surgery recovery, but another life activity this ruins is tandem biking: constant tailbone pressure.  Good thing my idea of paradise is lying in bed with Trent and my pets, watching Twin Peaks or cross-stitching.  I was never an active person.

 

 

Reminders for my friend who is getting a hysterectomy tomorrow

Send healing thoughts her way!  She is also in the capable hands of Dr. Garza.

• Prepare your husband for you asking him to kill you to end your suffering.  He should not be alarmed.  He should remind you the first 48 hours are the worst, you will get through them, there are X hours left, yes, your life is terrible, I’m sorry.
• Do not chase the pain.  Use the maximum amount of pain medication on time (set an alarm off you can sleep) until you stabilize.
• You will not remember the first days to a week as more than a blur.  You will be excruciatingly present but those memories will fade.  Maybe your brain protecting you from pain.  Don’t watch serialized television and warn people you won’t remember them checking in on you.
• The lap gas.  Take Gas-X, demand massages, and get your partner to take you for a little walk around the room to get the gas out.
• Take stool softeners every day and then try a laxative on day 3.  Even if it doesn’t work, it will prepare your body for the trauma that will be your first post-surgery shit.
• Golf-ball sized blood clots are normal.  Feel free to disturb the on-call nurse with any concerns.
• You will survive and the pain will stop and you will obtain a better quality of life.

Netflix and Sick

Put this in the MOMA

My best friend is pregnant and wants Netflix recommendations for those long nights which blend into days.  As a sick, I’ve scoured Netflix for some deep cuts and this is what stuck.  You’ll notice the CW performs very well in Nil’s critical perspective.

Unbreakable Kimmy Schmidt

If you miss 30 Rock, there’s a show for that.

Adventure Time

Short, happiness-inducing, kid-friendly, you can jump into any episode although there is an overarching mythology.  Lemongrab is my favorite character.

Pretty Wild

One season, the stars aligned to film a reality show about a kooky family while the Bling Ring trial was occurring and two sisters were doing so many opiates and practicing The Secret.  Alexis Neiers is sober and a doula now.  Yup.

Sens8

Addictive and gives great eye candy.  It’s been so long since the first season with so many characters and different relationships that I need a recap before going into season 2.

Master of None

Charming, LOL, and Aziz Ansari uses his actual parents as his parents.

The 100

The first 3 episodes I wished death upon all these idiotic teenagers sent to post-apocalypse earth and often my wish was granted due to said teenagers’ idiocy.  By season 2, I set down my coloring book and paid attention, unable to wait to ululate along to the theme song beginning each episode.  You can pick up “Color Me Calm” again in season 3.

iZombie

From Rob Thomas, god-creator of Veronica Mars, this rewards close viewing due to a quickly-paced plot and pun after pun.  I’ve watched every episode twice, I would totally go to a Kurt Cobain retrospective with Blaine, this is the best show airing right now. Shady Plots, tee hee.

Bloodline

All I needed was season 1.  I’m good.  Also: Coach Taylor.

Person of Interest

The first half of season 1 is terrible so maybe it’s better to have a baby occupying your brain.  After, the plot becomes less case-of-the-week and more serialized until you find yourself weeping at an AI typing.  This series is why I have faith Westworld will become great.

The Magicians

Read the books.  There’s a talking sloth!  But then be surprised that the series lives up to “Harry Potter with cursing and sex”.

30 Rock

Like all other women, I am Tina Fey.

Black Mirror

Do not binge unless you want to feel horrible about other humans, the future, life.  I re-watch San Junipero and Fifteen Million Merits with anyone who is willing.

Les Revenants/The Returned

You will be reading subtitles.  The first season was so intriguing with the Mogwai soundtrack and then I waited four? years and couldn’t get into the second season.

Crazy Ex-Girlfriend

It took me a few episodes to get into but if you like musical television, give it a whirl.  All the music videos are available on YouTube so watch “Feeling Kinda Naughty” for a test run.

Twin Peaks

I was Log Lady one Halloween.  Catch up before the redux.

Lost Girl

This is a silly concept on paper (succubus fights supernatural crime) but ever so charming in execution until the end, where it begins to drag.  The characters, especially Kenzi, are hilarious and play off one another well.

Doctor Who

You’ll always love your first Doctor.  I refused this ridiculous and magnificent show for years until someone asked me to watch “Blink”.  After that, I started with David Tennant and never regretted it.

Friday Night Lights

High school football soundtracked to And You Will Know Us By The Trail of Dead.  I’m tearing up thinking about the beauty of it all.  Except for the season 2 murder cover-up.

Lost

Someday, I will watch this all again.  Not yet though.  I spent too much time lurking on fan forums.

Planet Earth

Smoke some medicinal marijuana and gaze in awe at the diversity of our planet.

Weeds

I watched through Season 4 and then gave up, but found it quite breezy and enjoyable prior.

The Vampire Diaries

Again, a silly concept.  Teenage vampire love triangle?  The first 3 seasons are riveting and do some innovative plot twists.  After that, it’s up to you whether to continue or only watch scenes featuring Klaus.

Dexter

You’ll want to keep watching after the perfection of Season 1.  Don’t.

Every Joss Whedon project ever: Dollhouse (my favorite despite a slow start), Buffy the Vampire Slayer (upon re-watch, I thought to myself: god I was cool to watch this as a teenager and Spike is really hot now), Firefly (try not to do a jig to the theme), Cabin in the Woods (a movie you should watch without knowing anything about the plot)

Except Angel.  Use a binge watching guide for Angel like I did and skip entire seasons.

 

Celiac anniversary

My final meal of Gluten Tour 2016

Tomorrow marks a year since I’ve ingested gluten intentionally. Since then, I got diagnosed as Celiac through endoscopy, was forced out of a job, started my own business out of necessity, bought a home and started renovating, paused working to have a laparoscopy where they sorta kinda diagnosed endometriosis, Trent moved us and renovated during my recovery, started work again and picked up Amazon delivery driving, went to the ER for cysts a few times, stopped accepting doula and counseling clients, and had expert excision lap surgery. Remember the “2016 is the worst” meme? At least I got to ride out the end on painkillers.

Gluten was the tip of the iceberg. At times, I’m overwhelmed by how much I want enchiladas potosinas from my favorite Tex-Mex restaurant or I’ll weep upon seeing an ice cream cake. But really, my quality of life dramatically improved when I went gluten-free and while it’s incredibly inconvenient and more expensive, I don’t miss gluten that much.

One month post-excision surgery

My husband sleeps on my gurney after setting the mood with LED candles and playing “The Sinking of the Titanic” by Gavin Bryars

Adapted (with typos) from a post to Nancy’s Nook Endometriosis and Education group on Facebook:

3.5 week update from excision with Dr. Devin Garza.

History: Pelvic pain and painful periods started in 2014 and increased. Cyst discovered via ultrasound. Lap to drain 7 cm endometrioma in August 2016 with original OB/gyn. Surgeon stated she saw signs of possible endometriosis. Went to ER in October 2016 for possible ruptured cyst. Surgeon recommended letting cyst dissolve and getting pregnant. 7 and 3 cm cysts discovered on ultrasound in December 2016 and surgery was recommended. That’s when I started researching on the internet and found Nancy’s Nook, which changed my life and gave me hope.

I immediately made an appointment with Dr. Garza three weeks out (he was out of the office). I had one more ER visit for pain and the clinic was kind enough to move my appointment up. Dr. Garza already had my files, answered my questions and we scheduled surgery for two weeks out.

I was in surgery for 2.5 hours and woke up in the most pain I’ve ever felt after surgery. My urethra was on fire in addition to abdominal pain. (Dr. Garza says I may have a reaction to latex catheter). I was crying, deep breathing, gripping the gurney, and was given 9 doses rotating Dilaudid and morphine over an hour until I could leave recovery.  [Editor’s note: I requested that the nurses cut out my vagina.]  (I was taking opiates and Tramadol for a month prior and I’m very small. Dr. Garza said they may have underestimated my tolerance to pain medication. Please mention this going into surgery if you’ve been on opiates). I was released after another hour outside recovery.  [Editor’s note: a nurse said to me, at least childbirth will be easy compared to this.  I’m going to hold you to that.]

Two cysts were removed from my right ovary, a smaller cyst from left ovary, endo removed from pelvic wall, and Dr. Garza separated left ovary from Fallopian tube. He gave us neat surgery photos!

The first 48 hours were extremely painful because I react to the surgery gas. My pain was not controlled on recommended medication. It was mentally difficult on myself and husband.  [Editor’s note: I begged my husband to kill me.]  Urinary urgency, blood in urine, and burning led me to call the office. They got me in same day to see another provider and prescribed antibiotics but five days later the lab results came in negative for infection. (Possible reaction to latex). They refilled the pain medication and after 48 hours, the pain was tolerable and I could sleep. The office was responsive about answering questions via telephone (huge blood clots are normal). On day 5, I felt energy again.

At two week check, I was no longer on pain medication and Dr. Garza cleared me for all activities. I immediately had my period which was the heaviest I’ve ever had and I needed Tramadol for the first two days. Now I have no pain and am starting pelvic floor physical therapy again. I have more energy than I’ve had in at least a year and a half, I feel more articulate, experience less aphasia, and my circadian clock has adjusted to where I wake up earlier and sleep less. I’m so hopeful at this point although I know the nature of endometriomas. I will forever be grateful to Nancy, this group, and its volunteers. Thank you for giving me a chance at having my life back.

2 weeks post-excision

I got the all-clear from Dr. Garza at my two week post-op. Besides the two cysts on my right ovary, there was a small cyst on my left and the left ovary and fallopian tube were fusing together.

Education time: The best way to increase your fertility if you have endometriosis is to have excision surgery. If my ovary is in a weird position, it’s releasing an egg that won’t make it into the Fallopian tube and travel into the uterus to meet spermies. Endometrial tissue becomes inflamed and this inflammation is associated with higher incidences of miscarriage, placenta previa, cesarean birth, and other complications.

Therapy INSIDE YOUR VAG

Please note the typography of feces under the model.

I am returning to weekly pelvic floor physical therapy.  The PT is like, my best friend.  I’m sure she feels the same.  Physical therapy can be used in conjunction with recovery from excision surgery to address any remaining pain. Your muscles get used to contracting and protecting with chronic pain and can get stuck. So you get external and internal physical therapy. That’s right: therapy INSIDE YOUR VAGINA. It’s oddly comfortable. I treat it as a weekly gossip session.

If you’re having pelvic, abdominal pain, pain with intercourse, postpartum, urinary issues, male or female, PT can help.

Public thank you to my husband

Top photo: Uterus from the front. Everything white is endometriosis and occludes the ovaries. Bottom photo: Uterus from the back right. The right ovary is the gray sphere with the white cyst peeking on the right side.

Every bodily function was torture for the first 48 hours after surgery, even breathing. This was very different from my last surgery.  Trent was awake with me the entire time unless we napped. He read high fantasy to me (R. R. Scott Bakker), spooned vanilla ice cream into my mouth, told me I was doing a good job, carried Bingley (our elderly rat terrier) up and down the stairs, massaged the laparoscopy gas, woke me to take medication, helped me sit up, adjusted my pillows, walked me in circles around the bedroom, pulled up my yoga pants, brought water, called my doctor, encouraged me to keep going, watched Bravo, distracted me with what we have to look forward to. You’re doing a good job, Trent! I’m still alive.

The only way to eradicate endo is through excision surgery by an expert. Pregnancy, hormones, birth control, Lupron, ablation surgery, hysterectomy treat only the symptoms and are not a solution.

However, I have endometriosis with cysts/endometriomas. Endo cells can hide in the ovaries and come out to form a large cyst anytime for the rest of my life.

Excision is my best chance at obtaining a better quality of life and having children, but there is no solution to this type of endometriosis.