I’m feeling a lot better about my situation although I will get more data this afternoon.
My visceral massage lady said that prolapses happen over time. I can strengthen the muscles.
The nurse at the gastro appointment - I scored an appointment on Sept 16 which is the first day of my next improv session so I’m not thrilled about using up my energy to find out more data on my tush but this is my life - said it’s quite rare.
I responded with: well…I have had a lot happen to me.
She paused and said: yes, you do have a complicated history.
I know I’m headed in the wrong direction, let’s put it that way.
In more ways than one. I mean, my poor body is trying to defy gravity. It could be a faulty diagnosis at this point.
But I’m pretty sure it isn’t.
My friend wrote - after thanking her for working through this with me, it’s not an easy thing to disclose and she handles all of this like a champ, she didn’t respond to my comments about always knowing she was brilliant, stinker, she kept it hidden for so many years, how many women do that? How many women hide their brilliance? - that she hopes she is wrong.
I wrote back: I get that, but I don’t think you are.
It explains so much. Why my diet has been slowly shrinking. Why gd I’m so tired it’s hard to type. The iron infusion kicked my ass. I asked how long it will take to kick in and the nurse said about a week.
Just in time for my trip north, I realized!
She then said: you may feel kind of flu-like tomorrow.
I thought: no! Not me!
(don’t tell me that I’m too impressionable)
I can barely move today. I need to get myself to this 1:30 appointment that I managed to get yesterday with this great physical therapy office. All they do is pelvic floor stuff. A LOT of women deal with poor pelvic floor function after giving birth.
But it’s rarely discussed!
I feel different. After I wrote what I wrote yesterday, disclosing what I disclosed, I didn’t feel the anxiety I thought I’d feel.
The only way I can find the answers I need in time is to put my story out into the world.
Make it about the journey.
I’ve had the idea for probably two years. That’s what happens - a concept comes to me, but the context and the timing do not.
#savemylife is the hashtag which I already have on a t-shirt encouraging people to vote.
It’s so weird, how my brain works.
I also made an appointment with the medical medium friend of a friend! Why not? I’ll know if the information feels right.
I’m bummed about these trips not working out, but I had a feeling. So much keeps happening.
I mean, the first one was pretty obvious. A busy senior with college prep classes and a new cafe job (did I mention how proud I am? How great it was to see him in the apron working behind the counter. The older woman instructing him clearly so appreciative of how HARD WORKING HE IS???? I am sad about not having the trip with them, I’m hoping for one but once the school year hits, who knows, maybe I should start campaigning for December) and a busy kid about to start high school.
Sigh, these kids. I found a photo of me and them when they were small and it still feels like they should be that age, it must have been right before all my health problems, I looked so healthy and their ages make it around 9 years ago - yes that would mean the photo is from mere weeks before they found the melanoma. How has it been NINE freaking years I’ve been dealing with this hell hole? I stared at the photo for awhile - a happy moment captured while VACATIONING in eastern Washington. My smile. I’m genuinely happy.
The person I’ve had to turn myself into…I’ve lost some of that…privilege is the only word that comes to mind. I look harder, at least to me.
I’ve got to find a practitioner - doesn’t necessarily have to be a doctor - in time.
I’ve got to find the answers so that this doesn’t keep worsening.
If it’s exercises, then I’m golden! That’s where that Marv side of me, thank goodness it came along with the Lynch, comes in handy.
I guess the appointment today won’t be much fun. Poking and prodding.
I told my massage lady: don’t care, I’ve been wanting answers for so long.
It took them two years to tell me I likely have so many motility issues from nerve damage.
I don’t have that kind of time now. If I end up needing surgery, I’ll find my way to accept that. But I want it to be done calmly. I will go over every possible scenario and will let them know EXACTLY what my wishes are. I’ll have tons of tests beforehand to go over the landscape so that there are as few surprises as possible once they get in there.
I can’t have all that if I wait until the last minute, until things get worse and worse.
I’m doing it myself. What I wrote yesterday. Trying to ignore what’s happening inside of me.
So many people are concerned with the outside.
All I think about is the inside.
42 years old, the woman who died this passed week. There still isn’t an obituary.
I get it now. I have no idea how my family pulled ours together so quickly but let me tell ya, it was a team effort for sure to get everything ready for the funeral. Every single person contributing in some way to setting up the house, me looking for a photo, others writing and contacting the newspaper. Apparently, it’s not so cheap! We all agreed Dad wouldn’t want a zillion dollars spent on his obituary.
Even in death, he’d want to save a buck.
I still can’t believe it. I’ve heard that this is a common feeling, and that it’ll last a long time.
It just doesn’t seem real. I think if he’d been sick longer? But bestie’s mom died over the span of a year and it still…seemed shocking. She was so full of life and still fairly young.
How could I have known that her dad would need hip surgery today? I never “saw” the trip happening this month.
Since I’m finally disclosing this aspect of who I am, I’ll explain how this part works.
Sometimes I just don’t see something, and that means nothing.
But sometimes I don’t see something, and it means it’s not happening.
I remember being housed in, I think, City College dorm. It was in Harlem off 130th. It was this summer 10 years ago!!! How the hell has it been ten years???
I worked for that organization that Dr. Oz created, Healthcorps and they put the “coordinators" - the staff who would train all summer and then be placed in low income high schools - shit I have only 10 minutes shit shit I have to leave - around the country.
Maybe I will finish this later. I like to complete this in one time period but that’s not always possible.
Anyway, since I was officially living in Seattle at the time - but rarely there, I went to a lot of conferences since I was rent-free (I’d stay with my folks for these periods of time, which is why it still feels like “staying” here should feel temporary). I’d also go stay in NYC for a week or longer and work. I could make so much more money in that time frame than in a city like Seattle which is more DIY, although I could likely do something like food services in the home now and I’d find people willing to pay, upside of a wealthy city, the problem is that there is the old Seattle mixed with this new way of being, so the city is having an identity crisis, much like San Francisco - I didn’t have housing in New York.
My “boss” which I would call him even though he’d smirk because I was more of a consultant, made sure I had space in the dorm.
It was pretty sweet! It was huge for Manhattan. I had two beds in a beautifully air conditioned room, a kitchen in the center of the suite and then there was a second room on the other side with two more beds.
I remember him saying this other woman - Cassie, no fucking idea how I remember her name - was going to stay there. As soon as he said it, I knew she wasn’t coming.
Ends up, she got really sick and couldn’t come up for the summer and teach the psychology section - I think that was her area of expertise. I think that’s why that resiliency piece was something we spoke about a lot at meetings. That would make sense.
I really need to go. This is an area of the city where it’s hard to park.
I don’t think I can get an IV bag afterward though. Too tired.
Must stop writing.
LATER IN THE DAY:
I’m fucking wrecked. I’ve had so many double headers lately - two appointments in one day - my body is like whaaaa are you doing to me? I was going to cancel the IV appointment which was the second one, but I had just the right amount of time to drive there, and figured I might as well get some nutrients in me so I have energy for next week.
I can’t believe Bestie’s dad had the hip surgery today! She kept saying: of all days that he ends up needing the surgery. He fell last week. So I said: fuck it we’ll go to vashon another time, and I booked an appointment with this new physical therapist today, and the IV appointment afterward.
So it ends up that today would have not been a good day to go to Vashon anyway. Apparently, the iron infusion makes you super sleepy the day AFTER. I’ll feel good next week. I think I mentioned this but I’m too tired to read through what I wrote earlier. I don’t like writing in two sections like this - I like each post to be a seamless train of writing, even if there is no other rhyme or reasons in here, I prefer one offload all at once.
I feel much more relieved now after meeting with this physical therapist. The whole office ONLY works with pelvic floor issues! THAT is how many people deal with this sort of thing - but it’s so rarely discussed. Kids, men have it too - it’s not always from childbirth. Or surgery, in my case.
SO: I have issues with the muscles in my pelvic area and I’m essentially not using them correctly when going to the bathroom. I have to learn how to NOT strain, which will push down incorrectly and what nearly gave me a heart attack. There is a lot I can do at this point to learn how to contract the RIGHT muscles at the right time, and relax the other ones that are supposed to be relaxed. It’s all coordination. When they fuck with all those nerve endings during my surgery AND my small intestines fell into my womb area, now tangled and pushing on the rectum and bladder, it causes all these issues. I’ve known I have pelvic floor dysfunction so I grabbed the card for this PT awhile back from the IV place.
When I couldn’t get a hold of one office yesterday, I called these people and they fit me right in. The woman was very lovely - made the whole thing so practical and not scary, which is no easy feat with me these days. I’m functioning at low level terror a lot of the time when it comes to medical issues.
This was a huge wake up call, though. I don’t have forever. I’m an unusual patient so while nobody thinks my intestines are going to fall out of me any time soon, I DO need to focus on finding the right help. That was several days of hellish worrying and reminding me that I can’t put this off.
Something shifted when I wrote about it yesterday, even briefly. Last night, I was having all these ideas for bits and even stand up comedy. Integrating disability in there, cool stuff coming through. My improv friend and I are trying to go to an open mike night.
It still sounds scary to do an open mike, but I know my improv friends would totally come and cheer me on. If I bomb, oh well! That’s the awesome thing about improv, everyone is saying sorry sorry that wasn’t good in the beginning. After awhile, you realize, ahhh fuck it, you move on. Nobody cares, we’re all functioning from that instinctual place that sometimes spits out something good, sometimes bad.
It’s interesting how a lot of people in the class talk about being anxious people! We’re all in our heads a lot. I’m not the only one, for sure.
Then today, I told the PT how I was considering turning this painful situation into comedy and art. I feel like I have to. If I don’t convert it into a project, humor and maybe even something intended to educate and gd willing make people laugh, I feel like I could die of despair and sadness and living in this house with something shameful and embarrassing and only whispered about.
FUCK THAT!!! The planet is melting. The millennials are so OPEN about so much on the Internet and otherwise, that I’ll find an audience one way or another. The pickle butt crowd can go sit around talking about boring shit, instead of how to shit without straining the wrong muscles.
There, I’m talking about it. FINALLY. My goodness. This has been a long ass journey. So many puns too little time.
So I told this millennial PT - very cool woman, I’m so impressed how she handled such delicate topics and the whole exam so gracefully and made it so comfortable - said she loved the idea of me doing some sort of comedy with this topic.
You know what she said: like Tig Notaro!
I SAID YESSSSSS!! That’s exactly what I thought of!!!
And!! And and she has a gastro doc for me that I HAVE NEVER HEARD OF. (I’m literally going back and forth with a friend who has IBD about which GI docs are left for us to “interview”) She says she knows him personally and his husband is a pelvic floor PT! It’s not so easy to find MDs who are even a little open to alternative methods.
I worry the younger kids don’t understand patience. Long term gratification. Knowing when to act, knowing when to let it go, knowing when to find a way to handle it at another time. When they have more information, when they really know if it’s the right move for them. When they have more leverage to make it all worthwhile.
There’s a line in Pretty Woman that my mom and I always quote. She is treated like shit because of class, not money. She is holding MONEY - not unlike me this past year when I was begging doctors to help me.
No, it’s beyond that. People who have never gone without money don’t seem to understand this very well. There’s a store in Beverly Hills that won’t help Julia Roberts buy clothes. She shows them the cash and they still won’t help her.
She needs Richard Gere’s white rich man privilege to have a decent shopping experience. I’ll come back to all this later.
She gets these fancy clothes and holding a bunch of shopping bags, she goes back to that store.
She says: you work on commission, right?
Their eyes wide, they nod: yes we work on commission.
Julia Roberts character says: Big mistake. HUGE.
And walks out.
I think of that line often.
Now. I have some time, but I don’t know how long. Who knows how bad the damage is in there. Neither of these people that examined me have every had a patient with my complicated history. Also, no one knows what the mottling is on the front of my stomach. I’m not able to eat much these days.
There are a lot of complications inside of me.
I may be able to do some exercises and breathing exercises to strengthen the pelvic floor.
But that doesn’t address all of the other issues that are happening at the same time.
I told the PT today that one doctor told me that it wasn’t scar tissue that was causing my problems.
The PT said: there is no way with everything they took out of you that you don’t have scar tissue in there.
She was surprised that I had my omentum removed (it’s a sheath along the stomach) - apparently there’s a LOT of blood vessels and other things connected to the omentum. Great, I just read how the omentum has cancer fighting abilities. Now I don’t have one.
So many balls in the air. Well, I’m getting ready! I’m getting ready to talk more openly about mental health issues, suicide - I’m not going to hurt myself, but I do want to talk about the FEELINGS around it - and now pelvic floor, rectum issues, pooping properly, whatever! It’s on the table now.
Pride. Is it pride? Or is it something else?
I don’t know but something definitely has shifted in just the last day. Fear of surgery and organs falling out of you will suddenly make so many things clear!
Wow. What a wake up call. I’m so relieved that I can work on this piece as I work on finding more answers to all my other issues. No more fear. No more ego driven decisions. No more pride getting in the way.
The planet is on fire and I’m worried about talking about pooping problems when there are literally millions of people who would love this information packaged up for them.
Last thing: there was a woman in the IV room today that I woke up to her blabbing loudly. I passed out hard, I mean drool all over plastic pillow cover, yessss, this is the kind of thing I love reading but it’s taken me a long time to write like this (I LOVED Anna Kendrick’s memoir, so many of the celebrity ones suck these days, but she is a truly funny as fuck writer and just human being, talked about how she went on some boat ride and then couldn’t get to a bathroom to poop for two days, I don’t remember the details, I just remember that she thought it was funny enough to share in her book, I’m telling ya, the younger ones are like meh, why not, if it makes a good story) and she was such a whiner.
I’m allowed to say that right?
I used to be more of a whiner. I’ll admit it. Their pain is real! I just don’t need you to talk so loudly that you wake me up from my nap.
She is going on and on about nobody being able to figure out why she is tired blah blah blah. She isn’t just a tired mom, blah blah blah. I’m slowly waking up, thinking who is talking so fucking loud in here. Seriously, there were two little boys in that room earlier who were quieter than her. And they were getting rambunctious.
She wants a blood test to test for food allergies. Blood tests aren’t great for determining food INSENSITIVITIES and INTOLERANCES. Very few people have true allergies to food - like peanuts reaction. Most people have different symptoms that won’t kill them.
The doctor does a beautiful job of describing why something called the elimination diet is the best way to determine food intolerances - her and I have similar educational background so it was kind of fun to wake up to this information that’s been in my own brain for so long.
The patient already knew about the elimination diet! She let this doctor do this beautiful description - which lasted quite some time, a good ten minutes - and then says: ooooh but it’s so hard! I mean, chicken and rice for TWO WHOLE WEEKS! Ugh I LOVE food that’s just a nightmare. I’m going to be so hungry. Ugh, and my kids and my house, and my life, and two whole weeks on chicken and rice.
I’m laying there, with nutrients still pumping in my veins. All I’ve had is a coconut chocolate ice cream bar and my protein drink, and it’s past 4pm. I’m hungry so much of the time, I don’t even realize I feel hungry.
It was pretty astounding that she was saying all this in an an INFUSION room where presumably people are PRETTY sick. I stand up, of course, my hair needs dying and I’m wearing my usual summer uniform, t-shirt and my linen pants. I look over at her. I pack up my stuff and say to the doctor on the way out, knowing she can probably hear me, my mom and I both not good at determining what’s too loud because of all the hearing problems (OK I DON’T HEAR GREAT EITHER, not as bad as her, but all those fucking concerts when I was young definitely did not help things, we used to stick TOILET paper in the ears, oh good thinking Young Julie, way to go) and my sister-in-law has bionic hearing. I mean, it’s truly amazing, I envy it. You can be downstairs in another room talking in a regular voice and she’ll yell down: yes I picked that up yesterday!
I said to the doctor: we should tell more patients about my story, then they wouldn’t feel so bummed about eating chicken and rice for a couple of weeks.
Maybe I could put that in a funny skit, of course. I’m perfecting my voice for that character. That graveling Kardishian voice that has some square pegs valley to it (and if you don’t know what that means, then too bad, sometimes old people are going to know things that you aren’t).
There’s the Jewish east coast tough woman, that’s one character. The privileged whiner. I’m going to have to ease into that - so hard to not go straight to kale and quinoa. Gentle prodding, wake up.
I’ve got to let some of it out. I just do.
Pride. Ego. Fear.
Pride. Ego. Fear.
Pride. Ego. Fear.
Oooooh wouldn’t it be cool if I created characters for each of those with my improv classmates and have them tapping their “person” on the shoulder…..hmmmmm ideas ideas too many ideas.
Sarah is almost here to help me organize all these ideas, but mostly to help me pack for next week. Don’t think I can eat eggs today. Too tired. If she wasn’t coming, I’d be in bed already.
Good night. I hear her car.
Your very tired friend,