Today is the colonoscopy yikes 6.20.19

This is the ginger ale that also has the last of the miralax that I’m trying to down before I leave the house at noon.

This is the ginger ale that also has the last of the miralax that I’m trying to down before I leave the house at noon.

I want to crawl out of my body. That’s the only way I can describe how I feel right now. I want to crawl out and have someone else do the rest of the day, like how those bratty families had someone else have their kids SATs (one day, we need to discuss what an awful head fuck that is for all those kids, how’s that for feeling competent and confident as they enter life? Even my own parents don’t have FAITH in me. Without even discussing classism).

I digress. As usual.

Lsat night actually went pretty well. I have my prep down pat OF COURSE. I’ve had probably 20 colonoscopies at this point in my life. My doctor’s office didn’t even bother me sending me instructions on how to do the prep or give their recommendation on what to do.

I’m too cheap to use the ones they offer. One of them is nearly $100!

Nope. I buy the bottle of Miralax for $13 and keep my little laxative pills year to year (I mean, do those REALLY expire?) and some ginger ale. Good to go.

I drank nearly the entire bottle of Miralax by 7:30. Usually they have you start the whole thing around 5pm. In my old life, I’d start it earlier so I could get to bed earlier. I’d also barely eat the day before. A lot of people make the mistake of eating a lot the day before which just makes life more difficult on prep day.

For anyone new to the world of colonoscopies, they aren’t that bad! You drink a bunch of stuff, clean out your system, and head on in. Once the prep is done, the whole thing is super simple.

But I woke up and nervous that I didn’t clean out well enough so I’m now drinking that glass in the photo above. I don’t have much in there now - maybe a foot whereas a healthy colon is over five feet long - but the worst thing ever is if you’re not cleaned out enough.

Then you have to go home and do the whole thing over.

Now, for someone that eats burgers and little fiber foods like vegetables, it’s much harder to clean out.

For me? Well, that’s kind of my wheelhouse.

In fact, the saddest part of the last 24 hours is realizing that the colonoscopy prep is actually easier than my regular evenings! How FUCKED UP IS THAT?

One might wonder, why wouldn’t I take more laxatives?

Because then I would hardly absorb the little food I eat.

Sigh.

On top of the stress I’ve been under anticipating this, I found out my dad was meeting with that his doctor this morning and I had to miss it!

I coached my mom on what to say. She is a tough broad, but like a lot of people in her generation, still gets nervous around * some * doctors. (There are nice ones!)

I told her: you tell him we need to know if dad still has cancer in his body.

It’s part of the deal and it’s only gotten worse.

This guy…anyway, he keeps saying they don’t know because it would be in my dad’s fluid. So fucking what. I told my mom you say: so you can do robotic surgery and have this amazing immunotherapy? And you can slice DNA, you work at one of the leading cancer facilities in THE WORLD (we’ve had a lot of famous people come through here over the years) AND YOU CAN NOT TELL US IF HE STILL HAS CANCER OR NOT?

Fuck that shit.

If he doesn’t give her answers, I told her to get up and leave. I know my dad would be embarrassed by this, but his life is hanging in the balance.

That’s why we have all this home health care now. They don’t tell you that’s an option! They were just going to send him home after nearly dying - he was on TWELVE liters of oxygen at one point that week, that’s when they were talking hospice - now he’s down to 4 liters which is obviously much better.

I hate being so weak! I hate having so many medical procedures. I just got the sweetest text from one of the boys: I’m out of school early today can you hang out?

Awwwwww my heart.

On top of all this, my dermatologist called me yesterday. I was on a call with a friend who I love talking to, but I saw the number and knew I had to answer it.

I’ve never entered this number into my phone, even after 10 years. I kept thinking: one day, I’ll forget this number and need to enter it.

I’ve never forgotten it. Because there’s always something.

It was my dermatologist, the actual doctor on the phone! My heart started pounding.

When I was first diagnosed with melanoma, I was a fucking rookie and was all excited to hear from her. She is super cool and knows most of our family. She found my (redheaded) aunt’s melanoma and saved her life (hers went down to the bone, she was still jogging like 6 weeks later because that’s how we roll here), my mom has had a few small spots. My sister, my cousin, we all go to her.

I’d gone to see her for this infection on my chin. She starts rambling about the culture, and yadda yada.

Finally I burst out: is it cancer?

I was imagining THAT nightmare surgery, cutting into my face where there’s little flesh! And public! I already admitted how vain I am about my skin!!!!

She says: oh no, it’s not cancer, it’s a blah blah blah.

I stopped listening. She was trying to explain, but I’m running on like 5 calories this week so there’s no way I could download that information to my brain.

All I know is I’m supposed to let her know if it’s not entirely gone by next week. The rest? Unnecessary.

That’s what’s going on in my brain now. It’s why I can’t even figure out a cute outfit anymore. Black and work out clothes.

I even went to that graduation on Tuesday in my old work out clothes. I just didn’t have the time or bandwidth to switch clothes after getting home from an appt, quickly doing my podcast, and then hopping into my car.

I didn’t even think about how noticeable I must be in that crowd. And after I got up and hollered for the boy, I guess I’m saying: I AM FUCKING HERE MI AND I AM NOT GOING TO BE SILENT AND I AM NOT GOING TO GO QUIETLY.

IF I DON’T MAKE IT, you will know exactly WHY.

There was an adorable little girl that gave a speech after that about how she was new at the school that year and how it was so inclusive and such a wonderful community and blah blah blah.

As soon as she was done, I was done. I got up and pushed the doors openly loudly. I can’t help it anymore!

My punk rock side is out and proud!!! It’s strange. I faked it for so many years. And I can’t fake it anymore.

It’s so strange. Because I realize it’s a misnomer to say I’m not the same person.

I AM the same person, it’s just that different parts of my personality are stronger than others. And I handle things differently now, like I said before. Being an early person, getting nervous for social gatherings, much much more introverted, wary of using my energy, much less tolerance for bullshit. Oh wait, that last one was always there, I was just quieter about it.

Now, I’m like sure community, you’re SO inclusive that you’re letting your blue collar neighbors suffer while you do nothing.

It’s truly sick what this country has been, or turned into, I don’t even know how bad it was because I had so much privilege before.

One of the boys asked me one day, when I was telling him that he’s got to play the game, that he’s got to get to get the piece of paper.

He said: how did you play the game so long?

Hmmm. Stumped me. I said: I’m going to have to think about that.

I wrote him a few days later: I played the game, because I had to put myself in a position to help the people who needed it most.

That’s one of the things that keeps me going now.

People think it’s money and all that which lends power.

Silly. The very opening scene in House of Cards has a speech by Kevin Spacey rolling his eyes at the same sentiment. Money can be found.

My ability now to walk between so many demographics is what I can lend to the people who need me most. I can walk into a fancy party, and play the game. I can also walk into a tavern of blue collar workers, and talk their language. I’ve worked really hard the last few years to earn the trust of other demographics. I’ve forsaken my own contacts in the white activist communities in order to show that I side with the marginalized.

I have a list of people that have been written about nationally but then drop off the radar. I want to keep lifting voices up like the gymnasts that…I can’t even THINK about what was done to them. SO wrong. But I must think. I must look. I can’t look away. That’s where the pain is. That’s why I keep using that phrase.

We have to suffer. The least people can do is look. To feel a tiny, teeny bit of the pain of suffering that others go through.

I didn’t plan on writing any of that! I mentioned how when I haven’t eaten, the words flow out easier. Awesome! Can I write like this WHEN I’VE EATEN A HUGE BURRITO PLEASE. Why oh why did I just think of a burrito.

I was thinking about how I used to have a fat meal after my colonoscopy in my old life. There was this awesome Thai place in San Diego. I had several colonoscopies before my surgery, and a couple after? I can’t remember now. I just know I had a lot.

I’d always order the Pad Thai. It was so good.

That’s one thing I wish I’d known. I wish I’d known when I was eating something for the last time. I wish I understood how much I should savor it. Spend time feeling the flavors in my mouth before swallowing them down.

That’s the thing so many people don’t understand.

We never know when something is for the last time.

You never know when you’re going to hug someone for the last time. Or, when you’re going to send that last text. I try to always say something sweet to the kids.

I just never know. Those fucking clots. Something else? I don’t know anymore all that I’m at risk for, I just know that I keep getting more and more malnourished.

I had a sweet new friend exclaim astonishment that I’m pulling together these improv groups.

I used to manage dozens of classes per week, so it’s old muscle. Anything I have locked into long-term memory is safe. Old skills like that. And that one is so strong. I could create programming half asleep, partially drugged and with no food for several days. I could create class titles (ok, probably not the best ones, but I could still do it - I had to create that culinary program in New York from scratch, and there wasn’t the Google option like there is now, so I had to look through actual cookbooks for concepts and ideas, I wanted to make sure to set us apart from the fancier more well-known schools downtown, so I had to find new angles for classes and think about how to carve out a niche for the program that would appeal to the people that would normally go downtown, “just” being kosher wasn’t going to cut it since people didn’t have a great impression of kosher cooking if they didn’t keep kosher. I can still list off my most popular classes. God I miss my old life, can you tell? I think I keep talking about what I used to be able to do, even though it sounds not humble to me, because I’m afraid I will lose…a lot of cognitive function or not exist anymore, and I want it written down, ok? This is like my rambling memoir. Why do I feel like I have to apologize for saying what I did at my old job!?!?!?! Sigh….)

Anyway, the friend was like: you do more with missing organs than most of us do with all of them!

She happens to be a super productive person so it was an especially kind compliment.

I don’t want to lose any more of my insides.

I’m not letting them take anymore. I don’t care what the hell they find in there. Sorry, peeps. I have to draw a line. I can shrink whatever is in there with the Vitamin C, ozone therapy, I have a whole list.

See, that’s the thing that surgeon didn’t understand down in San Diego.

I’ve been studying cancer prevention for over 20 years. I knew about my family’s situation.

(Ok I just finished ginger ale, I’ve done all I can, fingers crossed, you’d think ONE foot would be easy to clean out! I’m sure it’s fine, it IS easier than the old days, I had a tricky corner in my old colon, the transverse section, they’d have trouble getting past it and I’d wake up, because I was a legit redhead, I don’t numb well, it’s more well documented than it used to be, in the old days, the doctors wouldn’t always believe me and since I’m relatively small, they’d try to give me smaller doses of the sedation, one time I woke up and was slurring/yelling I TOLD YOU I TOLD YOU TO PUT ME OUT IT HURTS AND I AM AWAKE, I heard them all shuffling around the room frantically: get her more, get her more blahblahblah whatever sedation I was getting. It only took one time and then they were like OK you get the horse dose now! My guy today has it down pat, so I’m not concerned and plus that CORNER doesn’t exist anymore so…)

People trust the medical system so much. Well, the healthy ones do.

They shouldn’t.

Who could have imagine #disabledtwitter existing 15 years ago?

I’m not quite ready yet. A few more things to get in place. I don’t want to do any of it. None of it. I don’t want to live in this body anymore. I don’t want to die. I just want to live in another body. I don’t want to be a Voice. I don’t want to speak out. I don’t want people yelling at me (two people tried to conflate the Holocaust, the immigration concentration camps, and I can fucking call them that because that’s what they are, and the opiate epidemic today on Twitter whaaa? The Left…oppression olympics is not a good look).

Ok, onwards and upwards. Or inwards in this case.

A little colon humor.

I’ve had some pretty funny texts this morning. Thank goodness for my peeps. Truly. Humans. Can be angels.

And devils.

I’m lucky to have so many of the angels in my camp.

I wasn’t sure how it would all work, but I can see now, androgynous actresses on shows. I went for it, with no idea if this mohawk or any of this would work, or was right, or what the fuck. I just leap, and hope to hell it’s the right move.

I have to have faith that it will work out. Still leftover from my able-bodied days: it’ll all work out! That’s what this one woman kept telling me on a plane to California on one of my trips. She was in her sixties, in good health, had an excellent career.

I just sat there thinking: sure lady. It all works out. FOR WHO??????????? The kids in the cages? The Muslim families torn apart? The trans people getting murdered all over the country? The medically fragile dying as I write this in a system that doesn’t give a fuck about them? Not really working out for them, is it?

Jaded. So jaded.

So I have some jaded days. I think I’ve earned them.

I worked so hard to be able to write exactly what goes through this brain of mine. But sometimes I’m like…hmmmm….maybe this isn’t such a good skill….do I REALLY want to advertise on the Internet what goes through this mind of mine?

Sigh….

I still can’t believe I’m sharing what I’m sharing here and on my podcast now. I’m trying not to wig out about sharing the ability to sense things….someone told me years ago that I would around this age and I scoffed. Yeah right. I’ll NEVER let that secret out.

It’s in large part why I didn’t let anyone close for so many years. Many people that knew me when I was young know. They saw it in action enough times.

Then I see these social media influencers claim all kinds of shit and selling bullshit, not because they are so woke but because they are amazing at social media and marketing and clearly had the funds to get their career launched off the ground.

The only people I know that have had books published are people with money and deep networks, with the exception of a handful of people (like Stephanie Land for the book Maid which just got optioned into a movie how cool is that). Why else is there almost zero discussion about classism happening STILL across all the different media? I’m sure people wonder why I read so much Huffington Post. It’s because they give so many people from different demographics a Voice and I appreciate that so much. THAT I respect.

Not this middle of the road pundits who have a driver taking them to and from work, after eating their low carb lobster meal or whatever the fuck. They don’t SEE it, because they don’t HAVE to see it.

The hardest part for me right now is to not run after people and say: do you still like me? Am I still ok? DO YOU STILL LIKE ME EVEN THOUGH I ADMITTED THAT I AM A FREAK? Between my brain, and the sensing….never would I ever refer to disability as freak, unless someone likes to call themselves that proudly. Fuck I am so honored to be part of a group of warriors. I admire the activists, the advocates, the people who speak out and have for so many years, making my life more bearable now that I’ve joined their team.

I am very grateful for the ones who speak out.

Which is why I speak out.

If I can, I will. If admitting some things that I’ve felt ashamed about for years (I’ve been practicing my video speeches, I think it’s finally coming clear how those will look, but nervous as hell to share that sort of thing do you still like me? Will you still be my friend? I have to stamp out those worries. It doesn’t really matter. If they disappear, they disappear. I have to be honest about who I am, fully, or I really will have a mental breakdown, I can’t keep parts of myself hidden anymore, I literally don’t have the bandwidth, I usually can remember the shocking things I write in here or my podcast, I feel anxious after putting them up, but just this past week, I’m having a harder and harder time remembering something I’m feeling weird about, there it is, sitting on the noisy Internet, that’s the thing I have to remind myself. I’m not saying anything that wild compared to all the wild shit going around. Nobody listens unless it’s a bit weird anyway. I’m still feeling insecure though. But I’m making peace with the fact that I have to just fucking share more. I need a way to make a living and figure out how to find the right medical experts to help my GI. Being quiet and insecure and playing it “safe” isn’t how that’s going to happen. Survival. I said about the victim comment: I’m no victim, I’m a survivor. I do what needs to be done and people don’t always like that. I’m only alive because of my ability to survive and morph and figure out a new way of doing things, eat, or develop exercises. One of my roommates in San Diego was an occupational therapist. Big guy, used to wrestle, very sweet. He came home one day and couldn’t get over one of his patients who had I think lung issues since childhood. She just kept crying and saying she couldn’t do anything. His job is to push a little, which he tried to do. I believe him, he’s a good guy, I think he’s raising his son on his own now, a little baby boy. A gentle giant. He kept saying to me: here you are going through all this pain and struggle, and you just keep on doing it, and I was asking her to do this basic task with my help and she said she couldn’t do it, kept crying, and from what I heard, this has been a pattern for her).

People wonder how I do what I do. A lot of the times, I really don’t know how I do it either. Truly.

It’s that fighter in me. That drives people nutty sometimes, but it’s how I stay alive.

Damn, I need to find out how doctor appointment with my dad went before I leave. Plus, bathroom calling!!!

Fingers crossed.

Fingers crossed.

Fingers crossed.

Much love,

Jules