Eggless Nest

I was told that journaling helps fertility and I do all of the (contradictory) things that are meant to aid fertility.

[egglessnest]

A 1/4 of a marathon was run, a knitting club was researched, a 12-step program was visited and an Austrian election was researched and written about. This couple know how to do Sunday.

[egglessnest]

bis Tod uns scheidet

Year one of marriage, I learned that my husband was willing to read me dumb jokes off the internet through the bathroom door, while I inserted a glass tube in a wound to keep it from healing too fast. 

Year two of marriage, I learned that post op intimacy can be achieved through foot rubs.

Year three of marriage, I learned that health insurance red tape can be handled better with the patience and collaboration of two spouses.

Year five of marriage, I learned that maybe my illness wouldn’t get in the way of having a baby - then I learned maybe it would.

Year six of marriage, we learned that having a mom who died of colon cancer and having a constantly inflamed gut is a bad mixture. 

Year seven of marriage, we learned that the constant inflammation may be preventing us from having a baby. 

Year eight of marriage we learned that my illness is going to keep getting in the way of our trying to procreate

Year nine of marriage, we’re learning a new extent to the “in sickness and health” bit of our vows. We’re keeping our heads on straight while waiting for surgery for an ostomy next week. We’re taking deep breaths and being our best game partners and hoping for the best. 

[egglessnest]

Tricky business

Today I asked my nephew (4 years old) if he had any questions about my upcoming surgery. We talked about having diarrhea (”like when you eat too many grapes?” he asked) and being sick and being sick for a long time and needing to take the sick bits out. Did he want to know more? He did. So we talked ostomy. I took my sample ostomy out and showed him during our conversation via facetime. When all was said and done, he sat there silently and thoughtfully and then when the time came, he changed the subject. 

Remarkable how similar a 4 years olds reaction can be to a 34 year old spouse. 

[dcpierson]

A small David Bowie thing

This is a small David Bowie thing meant to be another David Bowie thing in the rapidly expanding star-cloud of David Bowie things.

Early on in college I babysat in Brooklyn. My first day babysitting a six-year-old named Gabe, we were sitting and coloring. I was probably thinking something about how pure and child-like coloring was, and how it was just a ton like improv, a thing I was learning and just as quickly becoming insufferable about at the time.

After a long time of us both being quiet, Gabe asked, “Who’s your favorite singer?”

“Elvis Costello,” I said, doing the most important thing you can do day one of a new babysitting job: establishing hipster cred. “Who’s yours?”

“DAVID BOWIE!” Gabe said.

Outcooled by a 6 year old. Truly this was Brooklyn.

Gabe hopped off the stool and returned to the kitchen counter seconds later where we were coloring with a big floppy black CD binder. In it were all the 70’s Bowie albums.

Gabe told me, “This is mine.”

I said, and meant, that this possession of his was awesome. We put on Ziggy Stardust And The Spiders From Mars.

As it played and we kept coloring, I thought, Oh, of course a six year old would like David Bowie. It’s so theatrical and visual, even just on record. At a time in your life when your imagination is as overpowered as it’s ever going to be, Bowie’s music would be like this audio accelerant.

Sometimes when I’m listening to music and doing a certain kind of task, this space opens up in my brain between the two things. It feels like a physical space, a room or something. Sometimes it’s an imaginary place, sometimes it’s a hallway in my high school. It’s weird and I don’t know why it happens. It happened that day because of course it did. And listening through the ears of a six-year-old, that space seemed wider than it ever had before.

That’s where David Bowie lives. He lives in a space in your head that is sometimes memory and sometimes completely made-up, a space that opens up between his music and you drawing, between him expressing himself and you expressing yourself. He doesn’t stop inside your head. He continues directly through you.

[egglessnest]

This is so beautiful

[egglessnest]

New Year’s resolutions

Miranda Season 2 episode 1 

”Today I've begun the new me. I'm going to be the kind of woman who, you know, just leaps out of bed and just does that (shakes head) and their hair looks perfect.

They then grab a muffin from their Cath Kidston polka dot biscuit tin and head to work wearing trainers at the bottom of a skirt suit to show off they've power-walked in.

They have potted plants that don't die on them. Their fruit bowl isn't full of three-week-old rotting pears because they actually eat fruit. They have day bags, an evening bag and a clutch. For lunch, they just grab a wheat-germ smoothie in between work because that's enough to keep them going, even though at lunch time they jogged and enjoyed it because they don't have flesh that moves independently to their main frame.

And finally, they have easy access to pens to finish a crossword at a car where the man they decided to take as a lover the night before says to them "Hey, last night was great!"

You know, I'll be that kind of woman."

[egglessnest]

Got a date with an ostomy bag. 

I got the call this afternoon, I’m getting my ostomy and losing my butthole Feb 4th 2016. Feeling a lot of feelings. For many reasons, I will not miss my butthole. The poor dear is full of hemorrhoids, scars, fistulas, setons, skin tags and woe. It has leaked consistently for the past 10 years, it makes my crack red and raw. Any gastroenterologist, gynecologist, or surgeon who has seen my bum has clucked their tongue and given me useless information about how to soothe the raw skin that suffers from the leaky tap that is my anus. 

The soon to be studied/burned rectum is scarred and thickened from a decade and a half of inflammation. 

The intestine above and below my diseased j-pouch (which has been soothed every now and again) has been permanently inflamed since my troublesome anastomosis in January 1998. No sterroid foam, no antibiotic, no immuno-inhibitor has been able to keep inflammation at bay once I’ve stopped using them. Yet another TNF blocker has run out of steam. It is time to give these guts a viking funeral and give me a barbie bum. 

I am feeling a lot of feelings, but trying to remember every time that my Crohn’s has gotten in the way of life, every time my burning butt has gotten in the way of my sex life, every time I have to go to the toilet just to fart because my butthole couldn’t be trusted to just expel air. 

But I will miss my abdomen as it is. And I will feel weird missing an exit that most people have. I am not comforted by the fact that my great-uncle also lost his butthole back in in ‘97. (HE WAS AN OCTOGENARIAN FOR GOODNESS SAKES!) And I am fearful about how long the healing will take. 

But good riddance to bad rectums. 

[egglessnest]

Umstandsmode

Maternity clothes in Switzerland are called Umstandskleidung. Umstand literally means “circumstances.” So if you’re dealing with the circumstances of unprotected sex, you can wear these clothes and be comfortable. 

I was recently telling my best friend - newly a mother of two - that I wanted to purchase some dungarees - overalls, farmer jeans... - for post surgery. She said “why not get yourself some Umstands clothes.” When I mentioned it to my husband, he said “That sounds horribly depressing.”

Interrupting IVF for an ostomy surgery effects us differently on different days. 

[egglessnest]

The bad bit

I was raised on rom coms. I should really say romantic comedies, as my education began back with the fast talking / face-mush kissing / man-handling romantic comedies of the 40s and 50s thanks to a woman who helped raise me. 

I sighed and cried and wondered at the actual color of the black, white and grey lipsticks worn by the women with the perfect hair who had to alter themselves or their expectations to find true love. 

My generation of rom coms typically involved a guy turning out to be a horrible person who needs to learn a lesson or a woman who was a bet, but I also enjoyed the Shakespearean remakes. The kisses were less smooshy and more midriffs were exposed and the zingers were less zingy, but I drank them in and sobbed at the right bits and got all thrilled at the right bits. 

it was my love of rom coms that allowed for the bad bits in relationships. Lil’ old me could turn a shitty relationship with a poor excuse for a partner into a 2nd act. I could hang in there because there would be the wonderfully rewarding 3rd act - surely - in no time. He would say something magical and signal  the fact that we were made for each other and that all would be well. Of course, we never see what happens after that. I didn’t know what happily ever after would entail, but I just had to get to the expensive-to-licence love song to play over the credits and the rest would take care of itself. 

The moment I left my mother’s home at the unripe age of 17, I moved on to a 3 year relationship. I worked 2 jobs, went to school full time, did all the cooking and cleaning and just waited till he would propose and we could get on with it. I went to a friend’s wedding, where the bride and groom were too young to legally drink their champagne toast and I kept thinking, “Get a move on boyfriend and marry me.” This was not merely to do with Hollywoods whole relationship in 2 hours. I had crohn’s with loads of complications and was sure that I would die young and wanted to just cram in as much life as possible. But then my sister was getting married, and she and her fiancé had had their first date the same day that boyfriend and I had and I saw the rightness of their commitment and the wrongness of mine and boyfriends. So I made an unceremonious exit and ended it in full 2nd act climax. 

I moved on from bringing home strays and went on to those rom coms that involve those second chance relationships ... or was I modeling those sexy May December romances? In any event, there was the passionate bit, the zooming emotions bit, the great sex and sleep overs and day dreaming bit. Then there was the conflict bit and even the breakup. There was a pregnancy, an abortion, a scene with the lead’s best friend catching the boyfriend at an early morning breakfast with his ex-girlfriend in a clear morning-after scenario. And then! the 3rd act. The getting back together. There was a “I heard this song while we were apart and it made me miss you.” We’d learned things and had been enlightened and were to be reunited. He just had to go out of town for a week and then we’d do it - our happily ever after. But that week was long enough. in that week, i had the realization that I was not in a rom com. I was an un-filmed woman in real life and I’d been treated poorly and I deserved better. But I still wrote an overly dramatic Dear John letter and ended it. 

Then there was the montage moment. I got a dog. I applied to grad schools, I dated with no intention of having a relationship. 

And then came the meet cute. The friend of the friend who never appeared to pay me any mind had shaved his head and I commented on it. He needed to write a paper on a local business and I worked in one. It was this cliché thing where I’d declared that it wasn’t a good time to get into a relationship and it was 9 months after the abortion and he was from abroad and it was madness and he kept late hours and I worked at 5 am....

But the bad bit wasn’t so bad. There was long distance which let me feel dramatic and strained. There was my illness and his health and my fears that I was a burden. But there’s happily ever after and instead of being a bet or him turning out to be a jerk and learning something as music swells and we look out rainy windows. We just get the happy mostly after. 

[egglessnest]

Breaking up is hard to do.

I once wrote a breakup letter - a Dear John, if you will - to Crohn’s disease upon the advice of my therapist. Her intention was for me - a codependent woman - to stop identifying myself by my disease. I don’t think that it worked. But that might have been because I didn’t do my traditional break-up ritual. 

In the past, after a bad breakup, I’d do the requisite stuff: get a bad haircut, maybe get a dog, wallow and eat things and - most importantly - I’d watch the film Sliding Doors and revel in the alternate universe that I’d veered on to and prepare myself to for what is to come. 

I feel in the need for some Sliding Doors. My marriage is more solid than ever and every day I’m struck with gratitude for my understanding, loving, patient husband. But I’m going to get an ostomy in January and my new fistula is causing me pain and I think that it’s one of those break up “if-I’d-known-it-was-the-last-time” moments, when thinking of the last time I had penetrative sex with my husband. Sure, we both feel game to keep trying at maintaining our healthy sex life once I’ve healed from my surgery. But the truth is, that getting a (permanent?) ostomy will be the end of an era and my midriff will never be the same again. 

So break out the ice cream and warm up the telly, cuz I need to wallow in the loss of that me as a sexual being. 

[egglessnest]

Fragile : Handle With Care : This End Up

[egglessnest]

consensus

Yesterday, a pain started near my danged Bartholin gland and in the night, there was swelling. This morning, the swelling had gone, but there was a lot of pain. 

I called my doctor and the secretary fit me right in for an ultrasound in an hour. As I trekked up to my doctor’s office, apparently my doctor was calling my surgeon. Because after the ultrasound that seemed to show that I had had a an abscess, which had solved itself, and that my fistula there was active and that there was inflammation. My doc told me that he0d increase the low-dose antibiotics he’d put me on and told me to get dressed. 

When I was ready, I went into his office, I gathered my courage and asked, “Is your antibiotic plan something for long-term treatment or a pre-surgery plan?” He admitted that he and my surgeon had talked and that it is a pre-operative plan. Apparently a calm gut is a better gut when it comes to surgery and it can reduce complications. They’re aiming for a pouchectomy early next year, so I’m going to try to enjoy my ostomy-less midriff until then. 

In the meantime, my doc advised that I contact a certain surgeon at the university hospital. Funnily enough, I’d already booked an appointment with him for Wednesday, for a second opinion. 

[egglessnest]

sisyphus is going for a second opinion.

I had my appointment to chat with my gastroenterologist. I was correct and the MRI showed fistula advancement, which caused the cyst. There are strictures above and below the j-pouch and in the rectum. And yet, surgeon and GI believe that we need to exhaust more medical paths before surgery, but the plan feels wrong to me. Plan Step 1 is up the frequency of my Cimzia injections and add low dose cipro (antibiotics) for 4 months and see if there is change. The thing is, we've done this and there is a change but then we return to usual care and within 2 months return to status quo of inflammation. Plan Step 2 is a new drug that's out that has no effect on inflammation but that targets fistulae, which feels half-assed to me. 

There's another surgeon, whom I saw for my fistulae, who will be included in the process when it comes to surgery - which my GI anticipates in a year. This guy is at the University hospital and I'm going to see him for a second opinion. I nodded my head and took my scripts, but I did tell my GI that I was confused by his recommendation, as we're just trying what we've already tried and it feels useless. He reminded me that lessening inflammation will be helpful for surgery, which is all well and good, but the plan as it stands now is to try things until they no longer work and evidence of "no longer working" is by definition inflammation. ugh. So I'm going to speak to the University guy and if his scalpel-happy opinion is to wait and try things that have previously not worked, I shall go with it

[egglessnest]

My favorite radio story is Starlee Kine's This American Life, where she tries to write a torch song with the help of Phil Collins. I love this story. I love the songs that she plays to demonstrate a great torch song, I love the song that she writes and even bought a copy on itunes.

I was the child who cried most in my family. Though I'd been accused of mock crying at opportune moments, I only ever faked gawping sob-like fish face, but all my many tears were real.

I wasn't maudlin or anything and I was easy with a laugh as well. But I indulged in the catharsis of a good cry.

For me, the cleansing nature of crying can only be used if I then move on to cheer or neutrality or any other emotion afterwards. But at times when I'm sad, I sometimes like to double-down on the sadness; really wallow. I'll listen to a sad song or watch a sad film. After breakups, I used to either watch Sliding Doors and just bawl when Helen thinks that James is cheating on her, or watch If Lucy Fell and weep when it looks like Joe and Lucy wouldn't get together (and then cry harder when they did.) Then there was the decision to not turn off About Time on the airplane home from my mother's funeral and - is "cried like a drain" an expression, or is it reserved for laughing? Because those were the sounds that that cry created. I mean, planes will make me cry at any movie, that tennis one with Kirstin Dunst, or Elf... Keira Knightly's Pride and Prejudice undid me on the way home from visiting Ivo during our long distance relationship ("I love, I love, I love you. I never wish to be parted from you from this day on." Oh the satisfying groan that gives me even thinking of it now...)

I like to try to put limits on a wallow, but I can sometimes get stuck in. When I miscarried a few years ago, a friend sent me the video of Walk Off the Earth playing the guitar simultaneously and singing Somebody That I Used to Know. I then listened to Gotye's song over and over, relishing the melancholy. Throughout the years of trying to conceive, I would listen to Barren Egg by Jill Sobule nearly monthly and allow myself at least a day to properly mope and mourn every menstruation - until we took a break from trying to conceive. We'd made a plan to try IVF and sex was purely sex and procreation was a bookable effort.

One of the ways I try to interrupt the momentum of bummer-dom is also music. I set a gratitude alarm on my phone. Days when I anticipate stress or when I've been feeling blue, I set it every hour or two. It plays a cheery or uplifting song and while turning it off, I take some deep breaths and concentrate on gratitude.

During the month of taking hormones for IVF, this was my alarm playlist:

Be Optimistic by Shirley Temple

https://www.youtube.com/watch?v=yQ6rPxQcGpk

High Hopes by Frank Sinatra

https://www.youtube.com/watch?v=4-bD0ZG5_2w

This Will Be Our Year by the Zombies

https://www.youtube.com/watch?v=FmuswTEGF-U

All Will Be Well by The Gabe Dixon Band

https://www.youtube.com/watch?v=L2-3ooX_XkQ

and our IVF / Path to Parenthood theme-song: 

https://www.youtube.com/watch?v=XZGYYDvZnpg 

I Got My Mind Set On You by George Harrison

The Zombie's song, as well as its OK GO cover, continues to give me hope despite the years that I have listened to it, wondering if it would be our year to become parents. This will not be our year. But today my alarm sang it to me again and I still thought that This Will Be Our Year for something. It needn't just be procreation.

In the meantime, I continue to let myself get manipulated by music and try to maintain homeostasis. If surgery is in my new future, I wonder if I'll come up with a theme song for getting an ostomy.

[egglessnest]

I remember my first CT scan. I’d not eaten in 2 months, 1 month was because i was ill and one month was because I was in hospital NPO. I was told to drink 14 cups of contrast (fruit punch flavor because I didn’t like fruit punch to begin with and I didn’t want an unpleasant association with a drink that I did like.) My nurse told me to tell her if I suspected impending emesis (it was a children’s hospital and she used kinder terms, but I don’t wanna be gross.) I did so, she called the doctor and was told to measure whatever was emitted and then give me a corresponding volume of the contrast. I poured two cups down the drain secretly, but all went well with my test. 

My father pushed my wheelchair to radiology and stayed with me every moment until he was shoved out the door for the “could you be pregnant?” question and the administration of rectal contrast. 

My first upper GI, my father was there as well. This time I didn’t skimp on the contrast materials. Though it was similar to trying to swallow a partially-filled balloon, i glugged down the barium. I had an ostomy at the time and the cement-like quality became comical when it was emptied into my bag. I felt like I was carrying wet cement on my hip. Between scans, my dad and I walked around the hospital and he kept me laughing. When  a little boy walked past the light wall and saw the pictures of my barium-filled j-pouch, he said “it’s like train tracks” and that kept us chuckling for the rest of our stay in the radiology wing. 

My first MRI, I was nervous. I wasn’t sure if i would feel claustrophobic or not. My mom came along and brought a trashy magazine for that purpose. I did feel a bit scared and alone in the machine, and so to soothe me, my mother read aloud (shouted aloud over the thrumming of the machine) an interview with some celebrity of the moment.  The poor dear nearly shouted herself hoarse and I was so grateful for her company. 

From then on, my tests were solo. They were less scary and more standard and I’d had the foundation of loving parents getting me through the first go. Now I fall asleep in MRIs, I chug contrast like a college kid with a beer bong. 

Today I will go for another MRI, i know what to expect from the whole experience, including the fact that modesty is not as respected in the country I live now as it was in the US. But the results...ah the results. My mother is dead and my father has a full plate of a partner with cancer and aging parents and my half-siblings in college. But I have a loving spouse and an online community of other gutless folk. So I’ll go to the test alone and deal with the results with my loving family of choice. 

[egglessnest]

no idea

How does one know when to call it quits? How does one know when to change course? How much mourning is allowed once the decision to abandon one course is made? How can one put the brakes on the momentum of 7 years plowing forward? 

How can a surgeon who was so gung ho about an ostomy suddenly act like the idea is a strange one, when all symptoms point to that being the right course? 

How come I always get sick during this countries school holiday periods? 

[egglessnest]

NO idea what to do

I’m healing from the removal of my bartholin cyst, which occurred days before my egg retrieval should have and I have no idea what my next step should be. 

Initially, the feeling of being sabotaged by my body (sadly, a known feeling throughout my life) my instinct was to go ahead and get the collectomy my surgeon had suggested in the past and that my gastroenterologist agreed with. 

But when I went to my normal GI surgeon for my post-op check up and presented this plan and he was all “ostomy? really? well gee...I don’t know...Lemme talk to your gastroenterologist when he’s back from holiday. In the meantime, see your gynocologist to check in our your surgical wound.” Bwah?! This is the same guy who said that my fistulae are ruining my already scarred and narrowed rectum and that it was irreparable and unsustainable! 

So then I go and see my gynocologist and she’s super optimistic and says what the fertility specialist says - to go again in 3 months. She remains certain that pregnancy will help with my crohn’s. When I mention my thoughts about an ostomy, she reacted as if stung and said that that was ludicrous. “pregnancy with an ostomy?! imagine! That sounds like the advice of male doctors. What do they no?! No, I advise IVF, let it help your crohn’s, do your ostomy another time.”

But the thing is that pregnancy with an ostomy IS doable. Loads of women do it healthfully all the time. And what if I get another abscess while I’m pregnant? Or what if the 20 years of constant inflammation in my j-pouch hinders pregnancy anyhow? Ideally I would like to get some embryos frozen while I’m not too old (I’m 34), but I am absolutely bewildered about which road I should take, which one I should want to take and which one I’ll even be allowed to take. 

Meanwhile, I’ve got my esoteric therapist in my head asking what it is in my past or in my subconscious that is standing in the way of getting pregnant. I believe that it’s only science and medicine that’s in the way, but his voice remains in there. 

[egglessnest]

The unluckiest

The day before my ultrasound and blood test to determine my egg retrieval, I had some swelling. It felt like a growing abscess, but was nowhere near where the typical ones pop up near my fistulas. 

I went to the fertility clinic on Friday and sat uncomfortably in the waiting room until it was my turn. This after calling my surgeon and finding out that he’s away until Tuesday and then calling his replacement and finding that they’re out till Monday. 

The fertility doctor felt around and guessed that it was a bartholin gland cyst, that it wasn’t crohn’s related and that they wouldn’t be taking my eggs out this time. 

So I’ve had it out and am mourning the failure and am considering going whole hog and getting myself that permanent ostomy my surgeon has been threatening me with in the hopes that nothing interrupts IVF again. i won’t do anything rash, but I’m going to have my post-op check up with my surgeon and ask his thoughts. 

If I’m honest, I’ve not been feeling well since the antibiotics I took while on holiday wore off. I’ve been suffering from frequent trips to the loo and also having trouble with continence the past few weeks. I want the freedom and guaranteed health that will come with shutting down my downstairs business before trying to reproduce again.