The more things change...

...the more they stay the same.

I've finally gotten to a point where my pancreatitis isn't flaring all the time. Wound up discontinuing two medications and starting two new ones. One for psych and one for blood sugar control. Because of this progress I've been able to continue in the bariatric program I started earlier this year.

That said, I'm in this in between space with my chronic illnesses. They are just debilitating enough that I can't work but not quite so debilitating that I've been able to win my disability claim. I received my first denial today. We will, of course, appeal.

The new psych med that I started, Seroquel, has been sufficiently stabilizing my mood but it has a number of negative side effects including weight gain. I am thinking my next steps will involve a total overhaul of my psych cocktail. It's only working for part of my life and I really need a holistic approach if I'm going to take full advantage of the weight loss surgery.

Plan B

Two weeks ago, when I met online with my GI/pancreas specialist, he laid out three steps for us to take in treating my daily pancreatitis symptoms. The first step was discontinuing a medication. While in some ways stopping this medicine helped, it hasn't reduced my pain, nausea and fatigue.

Steps 2 and 3 are where we start to get serious. Step 2 is an endoscopicly placed PEG-J tube. The feeding tube would go in through the wall of my stomach and extend down to the jejunum. Bypassing the pancreas allows it to rest and almost hibernate.

The tube would be my only source of nutrition for two months. The goal is to wean off of it in 3-6 months.

If the feeding tube is not effective in managing my symptoms the Dr would like to refer me to a surgeon who does TP/IAT. Total pancreatectomy with islet cell auto transplant. Step 3 is kinda terrifying.  The surgery would most likely leave me an insulin dependent diabetic. 

How do you follow a path where all of your choices seem, well, bad? I feel as though I'm only able to choose the least bad option at each stage. Every time, a medical procedure has won out over a life spent in pain. The stakes are pretty high this time. Is it enough suffering to justify giving up eating for two months? What if it takes longer?

My dad told me the last thing he ate before he gave up on swallow therapy was an apple. Since his throat cancer he hasn't taken food by mouth for over 8 years. What's the last thing I am going to eat? Please, let it not be broth.

I feel quiet, resigned. Except for the part of my brain that has gone stark raving mad at the thought. That part just screams.

I feel angry, too. I'm angry about the diet culture ideas that I might finally lose this weight. As if literally starving myself thin fighting a life threatening illness was such a great opportunity. Fuck diet culture.

Scream Closet

Today is a scream day. Off and on for the last few months I've been pondering creating a small padded room in which I can go scream and cry and rant and get all these awful feelings out of me. Some days it may look like I'm reading or watching TV but inside my head I'm just screaming. I'm screaming for me, for my friends and family who are so vulnerable right now. I'm screaming for injustices too big to comprehend. I scream my rage at the evil running this country. Some days I just need to scream. But after the screaming everything is still there. I am still there. I am alive, for the moment, and every day I am trying to make what difference I can. It's such a tiny drop of water against a vast desert full of so much going wrong. But maybe, for a little while, it makes it easier for somebody to survive. 

Keep fighting, folks. I'll be back to fight shortly. I just need to go scream for a little while.

Holding patterns

"You know that place between sleep and awake, the place where you can still remember dreaming? That's where I'll always love you, Peter Pan. That's where I'll be waiting." -Hook

My family is in quiet rotation, holding space for my grandmother as she passes from this world. The things that made her who she is have been slipping away from us for years. The artist, singer, gardener, mother and matriarch I have known my whole life has been slipping into dementia. 

I like to think that she has done and seen everything she wanted. She travelled, sang, painted, took photos, held her children, grandchildren and great grandchildren. There are so many joyful things that I remember about her. 

But I think the most important thing she ever taught me wasn't about joy at all. Nanny was a very balanced person. She believed in love, art, joy and beauty. But, equally, she found the value in pain, grief, destruction and sadness. There is no light without the dark. 

So, in this silent vigil, I am holding a place for the beautiful sadness. It must be beautiful because it is born of the joy and beauty of her life. 

Cease and Resist

Last year this time I was coming down off a pretty long manic high that had me exercising at 4 am, eating an all vegan, plant-based, whole foods diet, and I was convinced it would heal my woes. I thought I'd be able to go off all my psych meds and start living my life for real. In reality, I was having a very disordered relationship with food and movement. I fed back into my own mania by abusing caffeine and restricting my food intake. I felt clean and holy. 

This is the lie that diet culture tells us about our bodies. It's a pretty common lie from a lot of moralistic cultures. Things that go against the norm are dirty, evil, wrong and the people doing them deserve to suffer. You see it over and over again, fatphobia, homophobia, transphobia, and let's not forget the ultimate dirty/clean dichotomy, STI status. 

My favorite one is "Don't put your dick in crazy" like its catching. And that one is a double play because it implies that women are always the crazy ones. Actually, it's kind of a triple because it also implies that the only thing you could possibly want to do with said crazy chick is fuck and run. 

A lot of my therapy work this past year has been about undoing the harmful rhetoric that I've assimilated from our culture. It's hard work. You have to identify which thoughts are yours and which you've just started accepting because it's all you've ever known. Like the inherent implication that some objects and actions are more virtuous than others. Brown rice is more saintly than white. Chastity is more heavenly than promiscuity. Working for a living is the ultimate goal for everyone, everywhere and the only sanctified measure of value and identity. 

Identity is such a complex thing. We distill it down to a few words. It's usually your gender, your profession and your sexual orientation. In vanilla circles, it's even smaller, just your profession. I have had to come to grips with the fact that I am more than the things I do to make income. Come to grips with the flaws in my long held belief system. 

In a way it is immensely freeing. Completely, horrifically, terrifying, but also freeing. Once you've acknowledged that the accumulation of wealth is not only unattainable, but undesirable, you are suddenly free to prioritize the things that really matter to your life. My number one concern right now is my health. I am prioritizing getting healthcare, taking time to heal, and also acknowledging that I may not ever be healthy. I want to take care of my body and live in peace. 

It's time for a whole new view. 

Heavy subjects

For as long as I can remember, I've been fat. After a lot of work, I don't see this as the derogatory, death sentence that fatphobia tells me it is. Science tells us that healthy behaviors are far more predictive of healthy bodies than the number on the scale. (Read Health at Every Size, by Linda Bacon, I'm not foot noting a blog post)

I have a difficult time with body positivity for own body. It seems intent on thumbing its nose at me and I just don't feel all great about it. I eat nutritious food and my body just pukes it back out, or doesn't absorb the nutrients, or refuses to digest things altogether. Body positivity is a challenge when your body is faulty. I strive for body neutrality. 

I am working very hard at treating my body with love.

A loaded subject

"I'm staring down the double barrel of diabetes and pancreatitis and just for fun, mental illness is hopping around in the back waving a pistol at my head" ~Megan Davis 1/24/2020

The thing about it is that no single condition that inhabits my faulty meat suit is responsible for completely debilitating me.  It's more of a group effort.  The physical conditions impact the mental conditions which then impact the physical conditions and so on and so on, ad nauseam.

Today, for example, I woke up early and did some yoga.  I had my coffee and played a game on my phone.  I then spent several hours trying to straighten out some bureaucratic nonsense to do with my healthcare coverage.  My mental health creaked a little under the strain, which cause stomach upset, which aggravated by pancreas, and so after spending four hours on the phone, in government offices and weeping, I got to spend half an hour dry heaving on the floor of the bathroom.

It's a glamorous blog here, folks!

If there were just one, or even two or three, chronic conditions in the mix it would be so much simpler.  Do you know how amazing it would be to experience a symptom say, pain, and know that in all likelihood my single chronic illness was likely to blame?  Abdominal pain, why it's your pancreas, Megan! Instead it's this giant guessing game of which part of my body or brain is losing structural integrity at this very moment. 

The real answer is that it's all of the above.  I live in a faulty meat suit.  This shoddy body of mine.  It looks good from certain angles but the reality is that it's mostly held together by yoga and Gatorade.

How do you live a full life with the certain knowledge that your body will bend, break and fail you over and over again? 

I am holding my life in an open palm.  If I try to do too much, the body breaks, if I don't do enough living the brain and mind start to crumble.  I just have to wake up, breathe and try to stay alive for one more day.

2020: Fatter, louder and gayer than ever before

Greetings!

Welcome to the new and improved blog, The Shoddy Body, by Megan Davis.

Who is Megan Davis?

That's me!  I am a queer, fat, femme who happens to live with multiple chronic illnesses.  This blog will chronicle my journey in transitioning from full time work to professional patient.  

Spoiler: I live in the USA so expect plenty of complaining about Social Security, healthcare and fatphobia.

What is a chronic illness?

A chronic illness is a long-term health condition that may not have a cure. Chronic illnesses can be progressive (gradually worsening), episodic (condition increases and decreases in severity), or simply constant. 

What's wrong with you?

First of all, don't ever ask anyone that ever again.  That said, I live with multiple chronic illnesses, including, chronic pancreatitis, PTSD, and bipolar disorder type I.

But, Megan, you don't look sick!

Fooled you! I'm still sick even though I don't look like it.  In addition to chronic illnesses I identify as disabled. Due to the nature of my illnesses I suffer from such lovely benefits like nausea, vomiting, mania, depression, panic attacks, chronic pain and extreme fatigue.  Sometimes, I even use a wheelchair.

A wheelchair?!? You're not paralyzed!  Why can't you walk?

Along with 6.8 million other people in the USA, I use mobility aids. This means that depending on my health (which, as we addressed earlier, is variable) I may need a cane or crutch at times but, also, I sometimes use a wheelchair.  I am an ambulatory wheelchair user.  This means that I need the wheelchair to transport myself but I'm able to use my legs and walk shorter distances most of the time.  Part of my current healthcare journey is getting a wheelchair approved and provided by Medicaid. This is an ongoing saga.

Still with me?

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