Sunday, October 13, 2019

Working hypothesis

I have a hypothesis that's been brewing for the past decade. Something that began to form while in the trenches of fertility treatments and I've been slowly probing for with each new physician appointment for establishing care or following a period of illness. For years, this hypothesis has been percolating in the mind, surfacing in moments for tweaking and adding supporting facts, but recent changes with my new position and combined health issues have brought it screaming to the forefront. Meaning it's time to share.

A few months ago, I came into possession of a new book by Matt Richtel titled "An Elegant Defense." For anyone that is science inclined but finds the jargon overwhelming, Mr. Richtel does a nice job of breaking down the history behind understanding the immune system and the role it plays in keeping us healthy. But the part that had me stopping to think were the stories of the patients Mr. Richtel interviewed, particularly the ones about two women who have autoimmune disorders, laying out the case for who their own bodies defenses were betraying them. And as I read their stories and all they had experienced, I couldn't help but notice the parallels for all I've been living with.

I'm currently in the middle of the worst hemorrhoid flare I've ever experienced. Hemorrhoids aren't a new thing for me, but 3 years ago mine were exacerbated to the level that surgery was first something my medical professionals were willing to consider. Despite this, due to continual warnings about how painful this surgery was, I didn't pursue surgery and have been in maintenance mode, using common techniques in order to get through flares. The problem is, my hemorrhoids don't behave the way most medical professionals commonly encounter, being triggered by changes in hormones (read they tend to crop up around my period) and me having extreme cases following a period of bodily stress or extreme illness. In short, I think they are immune-related, which hasn't been well received.

Last Monday, I hit the wall with pain and after vomiting due to how extreme it was, I made an appointment to see someone at my PCPs office. Unable to sit for any period of time, I decided I was done sugar-coating my concerns and made it clear to the nurse practitioner that I wasn't leaving without a referral to a gastroenterologist and some seriously strong meds.

At the end of the appointment, despite being visibly horrified from the examination at the state my body was in, she began to warn me about how painful hemorrhoidectomy is. And that's when I looked her in the eyes and told her about all the research that showed medical professionals routinely downgraded women's health due to not believing their patients about symptoms and pain levels. I told her how disappointed I was that my pain was continually being downgraded, leaving me frustrated that I had to fight in order to be taken seriously. As this NP's face turned bright-red, it was clear that this was not something she had ever considered, leaving her to stop fighting and instead upgrade my referral to urgent.

So what does all of this have to do with my hypothesis? Well, I've long believed that the underlying cause for my infertility is an autoimmune condition. One that medicine is unable to diagnose because we currently have not advanced to the point that it is detectable. And this is fueled by a growing belief that many in this community have undiagnosed immune issues. There is growing evidence that endometriosis is linked with immunity and that there's also a connection with PCOS and I've long suspected that premature menopause and diminished ovarian reserve also have an immune link.

What all of this has to do with me now is I believe that I have irritable bowel syndrome and that it's gone undiagnosed for a number of years. I'm not expecting a silver bullet with this, especially given that all test results tend to come back normal. But fueled with new knowledge about the immune system (I'm not an immunologist, so this has taken a bit) as well as some patient case studies, I now have sufficient information to make a case with the GI I'll be seeing this next week.

Because my hypothesis is that my infertility and my current flare aren't separate issues, but instead part of the same issue that has long been undetected, all pointing to issues with my immune system. And I firmly believe that many who receive an infertility diagnosis are facing the same systemic problem.

Monday, October 7, 2019

#Microblog Mondays: The new routine

It started with Jaxson running away from home. More specifically, sneaking out the front door. I didn't realize he was missing until 3 am when Daisy was calling for the birds without him joining her in a duet of meowing.

20 hours later I was curled up on the couch, sobbing uncontrollably while Daisy tried to calm me down and Grey gently consoled me. I was convinced my beloved cat of 15+ years was dead, eaten by a coyote/bit by a rattlesnake and somewhere in a ditch.

10 minutes later I would find him trying to sneak a meal from the cat food I left out for him on the front stoop, creeping low so as not to attract any attention from us. Happy, smelling of earth and no regrets.

Made my mother cry. No fucks given.

She was so happy to have him back. Then she spent the rest of the night beating him up for leaving without her.
The result from this incident was 2 elderly cats who decided that their days as indoor-exclusive animals were over and, hence, began a 5 am campaign to be let outside. After 16 years, they've both become skilled at maximizing the acoustics from a housing structure, allowing their howls to carry in a manner that mirrors surround sound.  This combined with years of stress, a new home setting that was generally peaceful, a backyard with a 7 ft fence, and an invasion of birds into said backyard led to a drastic decision I never expected to make.

I let them out.

And now, for 2 hours every morning, there's amazing silence. Combined with insanely happy felines. Grey and I can't remember the last time we slept this well.

Where's the sleeping kitty?

It hasn't been all sunshine and roses. Jaxson is far too large to get on top of the fence, but Daisy is another story. She's taken to fence walking every morning, teasing all the neighborhood dogs in the process, which has made me a bit unpopular with the neighbors. She's also decided roofs are pretty cool, especially for this purpose of dog-torture.

The only downside is that my mornings now start at 5 am. Like clockwork, the yowling starts with the promise that the pain ends the second I open the door. In addition, the bird invasion hasn't ceased since Daisy has been outside (if' nothing, they seem to know these two are too well fed to be a real threat), but Jaxson has been ridding the neighborhood of the mouse population and Daisy has been redeeming herself with the neighbors by shifting her attention to a local family of squirrels (who have been surprisingly destructive!!!)

In short we after so many years, we finally have found a routine that has brought peace, quiet, and a complete end to door dashing.

Sunday, October 6, 2019

Owning the narrative

Any hiatus on my end is rarely planned. The pattern usually starts with me going into something new, putting my all in, and suddenly finding myself too exhausted at the idea of facing another computer screen at the end of the day. But another aspect to these gaps in writing comes when I find myself in a place where it's beneficial to be listening. Where I'm absorbing so much information around me that often it's hard to make sense of where to begin. After 7-months, though, I'm long overdue for structuring my thoughts.

Please bear with me.

Each and every organism that walks this earth has its own story to tell. This statement in and of itself isn't terribly profound, but where it becomes reflective is when a layer is added that often most of these stories are repressed. This repression is often not done to be actively malicious but is a consequence of someone else viewing the sharing of an individual story as being threatening to their own. Despite our individualities, our stories are intertwined. Sharing is often not easy.

Since starting my new position, I've been shocked at the number of people I've encountered who not only own their stories but unapologetically control the narrative. Both impressive to observe and a bit unnerving, the consistency of how they present themselves to the world, quickly rejecting any outside objection to their narrative, is something that completely alien to me. I'm used to my own viewpoints and narrative being readily contradicted, with others silencing the aspects they don't agree with under the claims that their narrative is being infringed upon. What my colleagues have shown me is that owning your narrative doesn't mean that other narratives cannot exist, but this silencing is something that is not tolerated.

I've been rolling this concept around in my mind over the past year as I've been navigating this new position and deep-diving into the technologies my employer is creating. From a business standpoint, it's been extremely eye-opening. From a personal standpoint, it's been a paradigm shift in thinking about my story from the past decade. The reality is, sharing my story makes people uncomfortable, with each chapter having an aspect that either leaves the listener silent or actively engaging in contradiction. For a long time, I assumed that the heart of the problem lay in the message. It hasn't been until recently that I've begun re-evaluating that as I'm now acknowledging that I've also been allowing others' discomfort or versions of these events to drive my narrative.

What brought a lot of this to a head was a mixture of swimming in this new environment and picking up books from three Minnesota authors that all address their stories unapologetically. As I devoured these memoirs, first from Nora McInerny, then Hope Jahren and finally Cheryl Strayed, I found myself both homesick for my childhood home and inspired to revisit all that has happened over the past decade. Because if I'm being honest, the trauma didn't begin and end with infertility; infertility was just a chapter in this book. The truth is things have been hard for a long time, with me dealing with a lot of self-hatred that stems from illness and things outside of my control. And while others around me were talking with pride about all they have accomplished and overcome, I found myself shying away in shame, assuming that all the hurt and pain was due to me being completely broken. All of it starting with others silencing my narrative when I was very young.

There are problems with allowing a select few to drive global narratives. The first being that quashing other's narratives limits the conversation, giving the false impression about views and experiences which often lead to polarized views. The second problem, though, is that silencing others has a ripple effect that can ultimately be very destructive. Not allowing people to own their narratives not only sends the message that that individual isn't valued, but it also plants the seed for unresolved anger and pain that blocks people from growing. It also has a tendency to produce people who revisit these same evils on others, usually with ever-increasing aggression.

The wheels have been in motion over the past few months to begin breaking down a lot of this, starting with owning the fact that I'm still not okay from all of this and that I need help. So as I was fighting to find resources and help for Maddy and Teddy, making sure the same evils weren't visited on them, Grey and I had the hard conversation about me starting to do the same work on myself.

What all of this led to is a long-overdue diagnosis of ADHD; something that shocks many outside my inner circle as 1) I don't have the usual symptoms and 2) I hold a Ph.D. (don't ask me why this comes up as a justification for said shock). The other angle has been me owning the abuse I have survived, both as I child and as an adult. The truth is I have allowed others in my professional life to mistreat me solely for their own advancement and those toxic environments and relationships have left me questioning my own self worth and abilities. It's only been on the heels of news showing the continued toxic patterns from these situations that I've been able to begin reframing, but the reality is my narrative is something I've allowed them to have too much control over.

With all of this, I've begun working to own my narrative in this new manner. Acknowledging that others will have conflicting views about certain events or insights, but also that I no longer need to apologize for the discomfort my story causes others as that's a reflection on them. To date, it's been a slow and sometimes painful process, with me being extremely grateful to have the support I have from Grey and others who have been cheering me on along the way. What keeps me going is despite the stumbles and the pain is the shift I've been experiencing in how I view myself and the lightness of no longer carrying the emotional loads of others.

All that said, I still have a long road ahead in this new chapter. There are still days I worry too much about what others think or feel when frankly the problem shouldn't even be mine. So bear with me as I continue working through all of this in the space. Owning my narrative really and truly for the first time.
Design by Small Bird Studios | All Rights Reserved