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 my little home-IV fluids kit. The electronic pump at the bottom of the photo regulates how fast the saline is pumped into me (the rate is 500 which is 1 liter per hour). The saline must be refrigerated which is why I usually have a blanket over me because I get cold from it going into my veins! And the port needle in my chest needs to stay "accessed" all week - which means inside of me - so that I can give the fluids to myself. It's itchy and annoying but man, I'm rethinking how I'll handle it moving forward since I feel better getting the liter per day.... 

This is my little home-IV fluids kit. The electronic pump at the bottom of the photo regulates how fast the saline is pumped into me (the rate is 500 which is 1 liter per hour). The saline must be refrigerated which is why I usually have a blanket over me because I get cold from it going into my veins! And the port needle in my chest needs to stay "accessed" all week - which means inside of me - so that I can give the fluids to myself. It's itchy and annoying but man, I'm rethinking how I'll handle it moving forward since I feel better getting the liter per day.... 

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.

THIS IS A GAME CHANGER for me.

I still have a lot of issues with my GI! And I'm eating the same boring stupid diet every day (although I DID discover Anita's coconut yogurt - thank you Jackie and Sarah! - and some Key Lime coconut ice cream which has been dreamy - new flavors make me very happy!)

But this could offer some crucial insight into what's going on inside my belly. If daily fluids makes me go to the bathroom more easily then motility could be a big piece of the puzzle.  It would be nice if I met a doctor that could share useful information regarding motility. But alas, these things take time. 

I'm not a patient woman. 

Unless I'm teaching you to cook. Then I have the patience of a saint.

Other than that, hardly any.

Anyone that's worked in a lab or is a scientist knows that patience is essential to conducting any meaningful research. I can only change one variable at a time and then study the effects. I try not to change more than one variable for at least three days. I record the results, review them against past data, and develop a conclusion. Then I move onto the next experiment.

This is what I do Every. Single. Day.

And not just for my stomach or hydration. EVERYTHING. Food, energy, sleep, meds, hormone doses, supplements, vitamin shots, vitamin IV therapy.

I perform self-experiments. Does this work? Nahhhh, pain. Ok, that's off the list. Does this work? Ok, only in tiny, tiny portions. Does this dose feel better? Yes, a little better.

Over. And over. And over again.

So many of you are perplexed why I look like I do and how I've stayed alive all this time.

It's because of these self-experiments. I've been conducting them since I was 20 years old and trying to heal the Ulcerative Colitis that I'd had since age 17.

I spent my 20th birthday in the hospital and decided I didn't want to be a sick person anymore.

It took me six years to heal the UC. But I did it.

This time, the stakes are much, much higher. I don't have a drug (prednisone) to stop the illness, which was chronic and not life-threatening (although people have died from it - usually due to not seeking medical attention, we'll get to that another day). 

This time, I don't have something that allows me to eat more food. And I'm not a young organism anymore. If something else breaks down in my GI...my diet has gotten smaller and smaller in the last 2 years. Every time, there is a major event, my diet shrinks.

There is not much left if something happens again.

I figure I have 2-3 years on my current diet - if I can stay on it - before another organ system breaks down and/or cancer grows.

I mentioned this to a very smart, nutritionist friend recently and she nodded grimly.

She's a really, really smart clinician - I don't know jack about clinical nutrition next to her. 

I'm pretty confident in my theories and estimates, but my heart sank when I saw the look on her face.

Her face said it all: 2-3 years is optimistic. 

The clock is ticking. 

I will see my old gastro doctor tomorrow and then a Lynch specialist at Sloan Kettering on Friday. I know they may not have a ton of new information for me.

But I know how it works in New York City. This town is all about networking. Smart people know other smart people. They will also appreciate me flying all the way here, looking them in the eye and saying: "THINK OF ME when you're at the next GI conference. If you see a study that might help my case, please send it to me. If you hear of some brilliant researcher in India, TELL me."

Maybe these doctors will know of some researcher in Europe or Asia that has invented a machine that can image (photograph) soft tissue. Or, has created a stint for the intestines. Or, I have no idea what else could be out there but I'm determined to find it. And see if I can extend my life AND, more importantly to me, IMPROVE my quality of life.

The thought of never eating anything crunchy again for the rest of my life is like a stake through the heart. I know it's hard for you guys to imagine what it's like for me....

I know this because it's HARD FOR ME. 

And I've been in this for over three years!

But here I am. 

It's taken me a LONG time to get to this point, where I'm ready to share my case publicly - both mentally and practically. 

I've collected data from a whole bunch of GI tests. I created a flow chart of my case. I've summarized my case. I got this website up and ready to share.

I'll be sharing my medical case soon, hoping you'll tag friends who are experts, or doctors, or researchers.

Because you know what I think will ultimately happen? 

It won't be a doctor that gets me to the right people.

It will be YOU. I just know it. You guys have kept me alive all this time. 

I don't see why that would change at this point.

Let's see if we can crowd-source how to keep me alive.

Weirder shit has happened on the Internet.

I can do this. We can do this. 

I can't do it without you.

Much love, Jules

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:

Read More

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.

Read More

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.

Read More

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.

Read More

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.

Read More

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?

Read More

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

Read More

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.

Read More