This is why I'm in pain

This is why I'm in pain

No, I'm not pregnant. I know that would be a much sweeter reason for this photo. But physically impossible for me at this point.

I promised you more truth about my condition. I know it's hard for you to imagine why I'm in pain. Or why I can't move food through my intestines. Or why I have to be home a lot or cancel last minute. I'm finally going to explain. 

I took this photo last week after I broke several of my own Food Rules. I ate fish after 10pm along with some avocado and coconut ice cream. My Food Rules are based on what causes problems and what doesn't - although I'm constantly making refinements and tweaking things as I go along and by no means an expert on my own condition yet. Far from it. I just know the bare minimum of keeping myself alive and minimizing pain.

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I'm freaking out

I'm freaking out. I've been through such hell these past few years. But nothing, NOTHING freaks me out like an impending vote on health care. Not cancer screenings. Not the mystery surrounding my digestive issues. Not even knowing I'm at risk for so many cancers. 

When there is about to be a vote, I'm so agitated, I have trouble thinking about anything else. I barely read books anymore - which used to be a soothing hobby that ALWAYS gave me pleasure. All I can do is obsessively read articles. I've noticed that I post more frequently - often about something I wouldn't normally post - as a way to calm the anxiety.

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The difference between JOY & HAPPINESS

Some days I feel like things are going to be all right. Other days I feel like my head is going to explode. Reading the news plus my fucked up life can really mess up my head.

I refuse.

But man is it hard. 

I've been eating basically the same thing for 7? 8 months? Started in early October. I have all these tricks to limiting the pain. Doesn't always work. I do yoga all of the time. I'm more limber now than I was as a kid during gymnastics. I think the yoga somehow must help counteract the darkness. Sometimes I boogy down because moving my middle around helps jiggle my insides. 

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I get jealous

I get jealous.

Of course, I get jealous. I probably get jealous about things that most other people don't get jealous about. You can catch me eye-fucking corn-on-the-cob as I walk by people eating at a restaurant. It may look like I'm looking at a wedding ring or the cute dude. But really, I'm thinking about what it would be like to gnaw on a juicy, fresh off the grill buttered salted cob. Or, the greasy chips and salsa. Or, the sushi...ok, I'll stop now. 

You get the picture.

Some people that have food restrictions or are on diets try to tell me they understand what it's like.

Don't. Please.

One of the things I work hard to do is make you feel comfortable with my fucked up situation. I try really hard to not focus on my own problems. Complain.

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Feeling some post-trip letdown

I've been back in town now for a few days and feeling a little lost. I spent so much of the last couple of months focusing on preparing for the New York trip that I'm not sure where to channel that planning energy anymore. 

So many people would love to not have to work! And I know that's a huge privilege in my life that I'm in this position where I don't have to worry (for now while my parents are alive and still working). But I miss it so much! I don't know what to do with myself every day. Going to so many appointments feels like a job, and takes up a lot of time. But it's not the same as channeling my energy into a creative and/or professional endeavor. I'm only 45 years old! In my prime. I've lost so many years of working that I don't know where I'd be now if I'd been healthy since 2010. But I know it would be have been exciting and challenging in some way.

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I'm still me AND disabled

I made it back from New York!! I was nervous about the flight because I had pain on the way there. But I made it back!

Everyone knows flights are dehydrating. For me, of course, this can be a huge problem. I dehydrate easily these days because my lame adrenal glands don't produce enough aldosterone which is in charge of reabsorbing fluids. Add that to a missing colon - which is also in charge of reabsorbing fluids - and some other factor like a hot day or a long flight, and I'm PARCHED. 

It took a long time to find the right doctor to oversee my adrenal issues. But I finally did in early January. I've been on DHEA and hydrocortisone since

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I made a new discovery

I discovered something new and very crucial on this trip to New York City. I feel MUCH better when I have 1 liter of fluids per day over 2 hours rather than 2 shoved into me over 2 hours (which is very, very fast and nobody can believe I can get all that and never pee or have any BP issues). 

THIS IS HUGE NEWS FOR ME. It forces me to reveal something I'm embarrassed to share but f#&* it, if I'm going to share my medical case in order to get help, I'm going to have to post this stuff ANYWAY. I need to be brave and just start sharing!

GETTING ONE LITER A DAY HELPS ME POOP BETTER than 2 liters every few days.

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I'm going to New York City!!

I'm going to New York City!!

Yes, it's true. I'm getting on a plane for the first time in a YEAR.

TOMORROW.

O-M-G

I didn't want to share anything about the trip until now because there were so many variables that could have prevented it from happening. If the weather was over 85 degrees for more than two days, I would've had to cancel. If my stomach started giving me grief, I'd have to cancel. If I got inconclusive news regarding a cancer screening (which I don't always share publicly), I'd have to cancel. So many variables.

I'm such a fragile organism now. Which I find highly irritating. I don't see myself as fragile, never have. But it's a reality I can't deny these days. 

There are a few reasons for the trip:

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I'm glad I'm not a mom

I've never felt more relieved in my life to not be a mom. There I said. I promised you honesty! The Internet might explode more from me saying this than our current administration committing treason. But you know. Priorities. 

The weird thing is: I always figured I'd become a mom. While at the same time doing everything I could to avoid it. How's that for ambivalence.

I see now that I figured I'd become a mom because that's just what women in my family, in our culture, do. Also, I'm really good with kids. That's partly because I started raising them while I was still a kid myself. 

By the time I was six years old, I had two younger siblings and two younger cousins that lived across the street. By the time I was eleven, there would be two more cousins for a total of six younger kids I helped care for. I literally have no memory from my childhood where I was not mothering children.

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How I Resist while Disabled

How I Resist while Disabled

How do we stay calm in the midst of a crisis?

How do we set aside emotions that blur our thinking?

How do we stay hopeful when our world is collapsing around us?

Like people trapped in a car that’s gone over a bridge, the water level is rising. Some people are in denial. Others are fruitlessly banging on window that will never budge.

I don’t want to act. I want someone to save me.

Or, I want to let myself sink to the bottom and let go.

But. I do neither.

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I want a job

I want a job. I want to wake up, complain about waking up, turn off my alarm because it’s too early, and get dressed for a job. I want to put on my black work pants and a shirt appropriate for work. I want to stuff my breakfast down without thinking. Get in the car, already exhausted from imagining the day ahead, turn on the radio and sip my homemade coconut chai drink while navigating traffic. Traffic! I want to complain about traffic, my commute, how bad it is in Seattle now.

I want to get out of my car and roll my eyes at the flood of emails I’ve already gotten about a meeting that has been re-scheduled a million times.

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Am I strong enough?

Am I strong enough to carry other when I can barely carry myself?

Am I strong enough to stand up for love even though it will make me a recipient of hate?

Am I strong enough to fight when I can barely eat?

Am I strong enough?

I don’t know.

I don’t know if I can do this. If I can find the energy to strategize, organize, and resist.

I don’t know if I SHOULD use my precious energy to fight the demons in the world when I have to face so many of my own.

I don’t know what I’m capable of anymore.

This body is fragile and unfamiliar.

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I don't want to hide anymore

I’ve been thinking about how everyone keeps calling me brave. Because my view of myself from the inside is often a bumbling, neurotic, insecure woman. There. It’s out there now. I’m actually a very insecure, nervous nelly! I overthink everything. I dissect what I say. What I do. What I wear. How I speak. All of it. I think one of the reasons I loved living in New York is that I blended in so easily with all the other neurotics. 

Maybe this isn’t as big of surprise to you as I think it is. Perhaps it is.

Either way, I want to come clean. I want to come out of the insecurity closet and wear my neurosis proudly! Because, in the end, who the fuck isn’t insecure? Or questioning themselves all the time? One of the best things about being such an overly sensitive neurotic is that it makes me self-aware – some of the time too much, obviously – but a lot of the time, it allows me to sense someone’s sadness and ask if they are ok, inviting a heartfelt conversation. It allows me to think about each and every post and wonder: is this going to contribute to the Internet conversation in some meaningful way? Or is it just self-importance drivel?

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Everything I do to heal

This is my belly during acupuncture which I get for digestion and back pain. Dr. Wang adds electrodes to the needles for extra activation.

I’ve watched all of the Bourne movies at least 50 times. My favorite thing about Jason Bourne is that he is never a victim. Even when they try to assassinate him, he doesn’t run away. He confidently heads TOWARD the shooter. He doesn’t hide. He doesn’t wallow. He doesn’t cower in fear. He confidently flips the situation to his advantage.

Dorky, I know but movies like this help my mental state. It’s so easy to get down these days. SO EASY. 

I want to head towards cancer and the havoc it caused my body.

I want to challenge it. 

CONQUER IT.

More than anything, I want to prove the doctors wrong.

I love proving doctors wrong.

When I asked the gastroenterologist how to prevent bowel obstructions last summer after my hospitalization, he said

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Dear Cancer I want to hate you

Dear Cancer,

I want to hate you. I do. I want to KICK your ass with everyone cheering me on. FIGHT FIGHT FIGHT you as the enemy. I want to beat on you with a baseball bat, gloved fists, booted feet. You have stolen seven organs from my family in 18 months. You have halted my life. Cut me open, raw, 7-inch scar left in your wake. Toxic drugs plunging through my veins. Shrunk my beloved palate and plate. Messed with my hormones. Forced me to quit working. Changed so much of my life. You're still stealing from my dad. You've already taken enough from my sister. I want to hate you.

But I can't. I can't hate you. Ohhhhhhh, how I want to hate you.

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