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.
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