Readjusting my brain 8.29.19

This is Sarah! She’s helping me pack for my trip to the north next week. I have to do this well in advance to make sure I have enough medical supplies to last during the trip, count my pills, and medications, and also make sure I have things like my heating pad and roller so i can stay comfortable. I was very, very tired yesterday so I stayed in bed and went through my toiletries and then passed out, no egg day.

This is Sarah! She’s helping me pack for my trip to the north next week. I have to do this well in advance to make sure I have enough medical supplies to last during the trip, count my pills, and medications, and also make sure I have things like my heating pad and roller so i can stay comfortable. I was very, very tired yesterday so I stayed in bed and went through my toiletries and then passed out, no egg day.

[[NEW PODCAST is UP: I’m on my own sharing more about my disability. Check out the my other episodes on this page and listen to it on iTunes and Google Play!]]

I need to write my letter to the facility I’m staying at next week. I thought I’d write it here because then I’ll get it DONE. I’m feeling a little overwhelmed at the idea of going out of town on my own. It’s very intimidating! How weird is that?

For my 10 readers (I’ve bumped myself up to 10) who don’t know my background all that well: I used to travel on my own all over the world! I absolutely love it. I totally get that people who prefer company don’t understand this. But I really enjoy my own company - when I’m in a decent mood, of course, then like anyone else, I can get sick of my own company quite easily too - and I really enjoy meeting people from all over. I also love traveling with other people too. However, it’s got to be a good fit…or…well, I don’t need to explain that, right?

I know that traveling on my own is a very limited thing these days. I may never get to do this again. I’m aware of this. I’m always aware that the hug I’m giving someone may be my last. I’m aware of the last trip I take with the kids may be the last. I live that way. It’s just the way it goes in a medically fragile body that has so much cancer risk.

I’ve weighed the pros and cons and feel that this trip is super important for my mental health. I’ve been going to this place for nearly 30 years. I discovered it in a very magical way, a story complete with does in the meadow, rides from strangers, sunrises and all kinds of beauty.

It’s changed owners over the years but the guy that’s owned it for the last 10+ has done an incredible job of maintaining that original hippie vibe - he never advertises it! - while also staying modern enough for current times. I remember the owners before him…I went into the little cafe and they had these chairs that belonged in a downtown club, and a menu that didn’t reflect the area or the hippie vibe. Like many others, I was horrified.

Thankfully, it’s still a wonderful place to visit. I’m going to keep the name of it offline. I may have mistakenly shared it in a comment here or there, but I do like to keep it private since it’s a place that’s pretty special.

The last time I went on my own, it didn’t work out so well. I stupidly went during high season, I didn’t understand my own limitations, and I didn’t feel well. So I’m quite nervous about doing it on my own. But I can’t let one trip out of….probably over 20 at this point stop me from trying again.

I’m very nervous though. Sarah and I started packing last night. I have clipboards for her and me! I’m making sure I have all my medicines - I can’t run out of anything while on the road. It’s fucking scary man!!! I know it’s hard to travel with ONE medical condition - I did that in my twenties. Now? I’m traveling with multiple conditions and a needle in my arm.

I can’t write too much today, those two infusions and two days in a row of double header appts have wiped me out, I haven’t eaten much as a result because I’ve been sleeping so much. It’s warm this week too which isn’t helping.

But I was happy to wake up feeling a lot better about this new chapter than I have in awhile. I was really, really scared this past weekend that I was going to go down a terrible road again. I feel like my mental health part is in a better place than it’s been in awhile. It’s REALLY hard to do ANYTHING when that piece is so freaking off. The anxiety of needing surgery sends me into a tailspin. And I might still need it! I really need to investigate that with an open mind, and talk with a lot of people, instead of putting it off like I’ve been.

The last few days have been kind of remarkable in that the rest of my team is coming together. I’m meeting with the chef helper in a couple of weeks, I need to put together my food wish list, and recipe ideas. I have Sarah helping extra in September while she is out of school (she’s in grad school and finishing up the summer quarter), and the new helper starting next week! Also, it’s almost my birthday month - does everyone feel a little better during their birthday month or is that just me? I love autumn too, it’s my favorite season. Weather, colors, clothes. Summer has never been my jam.

There’s been enough photos up here to explain that one! I was surrounded by tan beauties and I was this super pale weird looking redhead. While everyone else was in the sun, I was hiding under beach towels and trying to find shade.

Of course. That does pay off. But still! It hasn’t been that much fun all these years having to be so careful. I remember being in Brazil on the beach and my friends were drinking their booze. I was too nervous to have even a sip because I learned many years ago that day drinking as a pale person is a TERRIBLE idea. I’ve got to stay sharp.

Survival skills. Too many people haven’t developed enough of them for this next chapter in the world. Can you fucking BELIEVE how fucked up the world is right now? I mean, I’ve been reading this shit for YEARS and I’m super jaded. Yet even I’m in awe of how bad it’s gotten and where it’s headed.

Ok project. Must focus. I’m very easily distracted. Have I mentioned how easily I am distracted?

But I need to make a few more calls and shut my eyes. It’s been a very productive week, but my body is struggling to deal with the IV stuff being shoved inside and all the driving and the heat and the lack of calories. I did stuff a bunch of cream cheese and coconut pudding in my body last night. But I had pain for most of the night so that wasn’t easy. I hate when I have nights like that.

I think the cornstarch in the pudding plus the tofu chocolate mousse - forgot about that, I’ll often do that, say to myself: I’m doing so well, let’s try this! And this! And this! Later, when I’m doubled over, I’m like FUUUUCK Julie.

In my old life, I’d eat one boreka - these delicious Sephardic cheese and potato pastries that our family LOVES - and I’d one, wait awhile. Ok I feel ok! I’d another and another. I finally learned that I’ve got to stop WHILE I’m ahead, not after the pain starts. This GI system of mine, so sensitive.

I’m also feeling more and more brave to share all this stuff. I spoke with one twenty something and she said her and her sister are SO open about bowel stuff which threw their parents off, and legit said: we had to teach them that’s healthy and normal to talk about this stuff. And now it’s an open topic in the house.

These millennials, they aren’t uptight. They might be a lot of things! But sharing openly is something they teach me ALL of the time!

That PT was so amazing yesterday and also helped me feel less shame around the topic. The fact that she has a GI doc for me to try - which has been the elusive unicorn - makes me hopeful that I can finally get some answers. Plus, to have a new PT I really like, and these two new helpers, and someone dropped off broth yesterday and homemade almond milk today!! How LOVELY is that? I mean so incredibly lovely - both women with kids and working and super busy - always ask the busy people for help (well they offered but I’m just sayin it’s true that busy people often are the best people to ask to get shit done).

I do hope I can get strong enough to help others. I really, really want to do that. I have so many ideas! But I can’t do it when I’m in pain, or not getting enough nutrients, or can’t find the right medical help. First, oxygen mask on myself. This is improvement! This is HEALTHY!

Ok letter to the new place, which I figure can serve as a template in the hopes that maybe I can get on a plane again. At the very least, I want to get to the Mayo clinic. Oh! That was another thing that happened just in the last couple of days - my friend in NYC got me a contact at the Minnesota Mayo clinic - the biggest campus - and will help me make sure I “apply” to the right department. They have several different gastro clinics! Yes, in just two days, I got that, my new PT, my chef lady called ME to follow up, and someone gave me their number! Seriously, it happened. My mind is all over the place but it was a nice ego boost!

SO I’m feeling like maybe there is some hope around the corner? I mean if the Mayo clinic could help me even PREVENT whatever is getting worse, that would be amazing. Or even tell me what the hell is going on in there! I HATE not knowing. While this prolapse thing scared the living daylights out of me (I won’t say scared the shit out of me for obvious reasons), it did make me realize how much I want, no NEED, answers to what’s going on inside. What the FUCK is going on with the medical establishment in Seattle? I’m not the only one struggling to get good gastro help.

That’s for another day.

Dear Facility,

My name is Julie Negrin and I’ve been visiting your facility for nearly 30 years now! It’s always brought me a lot of joy, and even healing, to spend time in your beautiful neck of the woods.

I wanted to alert you to the fact that I’m dealing with some health issues in order to better educate your staff, in the event that I need something. It’s risky for me to be traveling alone - but staying there is something I’ve done for my birthday over the years and I’ve established emergency plans, just in case.

This is the story:

After spending most of my life as an able-bodied person, I lost four organs to three cancers in 2014 due to a genetic condition called Lynch Syndrome. I currently live on a mostly liquid diet, a few eggs, avocados and vegan ice creams and puddings. I’ll be bringing my own food and staying in one of your cabins so I won’t require much from the cafe. However, I may ask your kitchen if they have any broths available or if they can cook me eggs a certain way - only when the restaurant isn’t busy and I wouldn’t expect them to prepare anything labor intensive for me. I used to work in the food service world, so I’d be very respectful of your staff’s time and energy.

Other than that, I shouldn’t need much assistance. I have an IV bag that I use to stay hydrated since my body doesn’t do that on it’s own. It means I have a permanent needle in my arm. Should I choose to use your tubs, I will carefully wrap my arm.

I’m alerting you because I did end up with an infected needle site several years ago when staying in a hotel. I don’t expect you or your staff to do take on any medical role! I understand that this is MY responsibility to take care of. However, if there is some sort of emergency, I might need help making some phone calls. I have a friend on the island with a car who is ready to pick me up. I happened to have an uncle with a plane business (what are the chances) who said he could come get me. I also have friends in the medical field on Whidbey Island who can also help.

None of my medical emergencies in the past have required IMMEDIATE attention. I have hours to deal with it. But that doesn’t mean that something new couldn’t arise! I know this is

I’ve made as many contingency plans as possible so that I can celebrate my 48th birthday in my favorite place on Earth after doctors told me I’d never make it this far!!

So essentially, there isn’t much I require except I do ask for respect and empathy with my situation. Because I look so healthy on the outside, sometimes people get confused about my genetic condition and how risky basic things like eating and taking a bath can be for someone like me. I never know when my last trip will be - it would mean the world to me if I’m able to make this trip and have it be a lovely experience.

I’m sure it will all go smoothly. This is the first time that I’ve sent a letter in advance - I’m still getting used to how this disability works and how to navigate the world. If there was ever a place I’d like to spend some healing time in nature before it’s my time to go, it’s XX!

Thank you so much!

Best,

Julie Negrin

I’ll definitely edit this before sending - Oh! I just got a call from them and got a second email address for the front desk so that’s good - I want to make sure they’re all aware - last time…well, it was an unusual thing and I’m not going to hang onto that experience anymore. At least I have a good working draft now! (I still need to figure out how to record what I’m doing and feeling each day - I started to do it in a notebook which had notes from 2018 that were relevant to now! But then a cat puked on the top page and he is such a weird guy, he licks up his own puke and makes it tidy as possible, how strange is that, meanwhile the other one is a complete slob, I’ll share photo of it down below because it’s so freaking funny but doesn’t deserve to be the the MAIN photo).

I may need to add more specifics about the food piece. I don’t know. I never know how much is too much to share. How much is too little. This really is why I share so much of myself on the Internet. That way, at least some really hard stuff is out in the open and I don’t have to keep saying AND well my dad died AND I can’t eat much AND AND AND….

I remember when I was going through chemo - at the end when I looked like shit, bald, scared - and I ran into an old high school friend at the Rite Aid here in this area.

She walked right over and gave me this HUGE bear hug and said: I’m so glad you’re still here.

It makes me cry just to think about it. Especially since I just got a call from some high school people reminding me of the reunion coming up. I’m only going to the bar round up (that’s often the case and it drives the planners who create this lovely official event a little batty because everyone just wants to get drunk in a bar wearing jeans instead of attending a nice banquet event, I feel their pain, but I can’t do two events in a row so…) but it was nice to hear them all say hello in the message. I get a bit impatient and lump people together but that’s not fair. I know this.

A lot of the world is changing and fast. A lot of people have their own fires to put out. I get that. Things are getting worse for a LOT of people. Sick parents, kids who are struggling, their own medical conditions, money issues, all of it, weighing down, the stress of the outer world starting to press in even the most privileged households. I get it.

I just wish people would heed my early warnings. Or at the very least, believe me. I think I’ve said this before but I often feel like I could be levitating, holding the real baby Jesus and the cure to cancer and still someone would pat me on the head and say: oh Julie, you’re so eccentric! Now let me mansplain how levitation works….

(Julie you know you can’t get sucked into a computer right? Oh I’m totally giving him shit for that FOREVER!!!!! Maybe I’ll make a whole movie about it and dedicate it to him, only because I love the hell out of this one and I never stay that annoyed or mad at him for long, one of a precious few though, he just smiles and I’m like fine you goofball say stupid shit like that because you’re so sweet and I know you don’t mean it the way it came out. Oh! I forgot to mention that my filmmaker cousin is MOVING BACK HERE AFTER 25 YEARS OMG I’M SO HAPPY. His wife really wants to do it, I think he does too but knows the winter and other stuff, not happening for a year, but that gives me just enough time to get a studio put together PLEASE PLEASE let me still be well enough to do these projects. PLEASE PLEASE let me live a little longer to download my medical info and maybe create some cool creative projects!! PLEASE PLEASE let me find the right support and people that LATELY thank goodness keep showing up who understand my vision and can help me make it a reality so that at the very least, this pain wasn’t completely in vein! At least if I download cool shit and make cool content, I feel less like a loser living in the basement which I KNOW nobody sees me as, but I often feel that way and that’s MY feeling, so if I’m creating cool shit and doing a podcast and making interesting videos, then I’m a creator, an artist, a CONTRIBUTOR to the WORLD! And when I die, I will have Julie Negrin, creator of X Y Z after my name which would make me die a very happy woman which isn’t so easy to do in this country so it would be quite the feat…I love doing the impossible it’s my favorite thing in the whole world….)

So much for keeping it short. I gotta go. The pain isn’t great today, I’ve got to figure something out. At the very least, I must MOVE because I’ve slept too much which makes my intestines extra lazy. I got the key calls done today. I wrote my letter which needs some work but it’s started.

Pain is so frustrating!!! I work SO HARD to avoid it, but it finds me nevertheless.

Your hopeful friend,

Jules

I always know it’s him because he tries to clean up after himself. Now if only I could figure out how to get teenage boys to do the same… :) I DO need to find a system to record my daily medical updates!! TBD

I always know it’s him because he tries to clean up after himself. Now if only I could figure out how to get teenage boys to do the same… :) I DO need to find a system to record my daily medical updates!! TBD