I had a last minute doctor appointment with the dermatologist this morning - the one who found the melanoma - today because my other doctor was concerned about the skin stuff.
I emailed my driver list and managed to get a last minute driver! It helps SO much to have those rides. To do 4-5 appointments per week is exhausting and then trying to navigate the Seattle traffic on top of everything else? People are SO aggressive on the roads these days. And to do all this on very little calories and exhaustion?
When I got there, I was proud that I remembered to say: I need to give you my new Medicare supplement card. I look in my wallet and realize that it’s sitting next to my paperwork at home. Blerg! I said offhandedly: I can send it to you when I get home if you give me an email.
This is usually fine. As long as they get the info within a day or two, then they can submit it to billing.
The woman says without any compassion: we require seeing the card at the appointment.
I’m on edge and sitting around people who aren’t super sick. This office does a LOT of things like botox, etc.
My friend is parking the car so she isn’t there to advocate (although she would have!) and I said: are you kidding me? I forgot it because my dad is super sick, I’m not doing well. I can send it to you within minutes. Just hang on a second. My appointment is only 15 minutes long so I didn’t want them to delay my CARE because they didn’t have the CARD. I’ve been seeing this doc for over 15 years. She sees my mom and my aunt who have also had melanoma, and my sister and my cousin.
She knows I’m good for the bill, if for some reason, insurance doesn’t take it.
I call my mom and ask her to send photos of them.
The lack of compassion in this medical system…
I can’t tell if it’s getting worse, because I’ve had so many things go wrong over the last few years, but it certainly feels that way.
I still can’t believe that the awesome primary doctor I found was referred by my friend’s KID. She is 19 years old and follows me - we’ve never met in person which is a shame! I feel like we have because I’ve heard about her for years, social media etc. but we haven’t actually met.
Her mom has also been super supportive and helped me a LOT with other referrals.
The kids. Who would have thought they’d be taking care of ME so early on!?
I remember dressing one and saying: you’ll take care of me when I’m an old lady, right? (I know, I know, but this is the age where you say stuff to teach them compassion so they understand that we all take care of each other. I hear so many people saying not nice things to their kids when they’re really small. I tell them what I want them to BE, I stay in vein with who they naturally are and then tell them, sometimes matter of fact, sometimes I whisper in their ear as I say goodbye: you’re such an amazing human being, and you’re so thoughtful and sweet, and you’ve got a kind heart and you’re giving and you're so so strong - something I ALWAYS tell the girls, and rarely focus on their looks - and smart, and I’m so lucky to be your auntie, you bring me so much sunshine - and they’re smiling the whole time. I like to plant the seeds when they’re small. I think a lot of times we end up doing it the other way, easy on the small ones - they’re so cute! - and then too hard on the teens. I try to do the opposite, I’m very, very strict when they’re small, then they know all the rules and boundaries by the time they’re cooked I barely have to say a word, I just say “hands” and they wash them without thinking about it, they really are cooked once they are teens, it’s just refinement at that point. The point of this is: why tell a kid what you do NOT want them to be OVER AND OVER again: you’re lazy is a common one…, no you tell them, at the right time, obviously not when they’re throwing a tantrum, the best qualities. Then… that’s how they see themselves….).
I DID NOT THINK I WOULD BE IN MY FORTIES when I needed help me carry things or whatever. I don’t ask too much. Just basic chores. Oh chores!
It seems so unfair to me. To send an 18 year old into the world and not have given the resilience and basic life skills they need to navigate the world. I talk to them about how to advocate for themselves and negotiate. Or send them off to college when they don’t know how to do their own laundry and cook! My goodness, I don’t get that one.
Teen, they still need a lot of reminding. Clean up after yourselves, make sure you’re a good roommate, and a good guest. Put your dishes away at someone's house.
I remember teaching these two young teen girls in a home “private cooking class” in Manhattan which was very lucrative but sometimes I couldn’t handle the parents or the situation. Most of them were SUPER cool. But every once in awhile, I’d get some…I don’t know how to describe it.
I remember the menu was fettuccine alfredo and caesar salad. Admittedly, a bit ambitious but kind of not for two teenage girls. But it was just us, with no other distractions, neither recipe is challenging. Just a few extra steps for novice cooks.
I was like: ok can you wash the lettuce. I often did the heavy lifting in the private classes, I like to make it “fun” for them, and not too much work. So I give relatively easy tasks while I quickly take care of the more sophisticated tasks.
They just stared at me.
Can you you go to the sink and pull the leaves off and rinse them under water?
I know you have to give VERY specific instructions in these situations.
Still blankness. Ok, I’ll do that how about you JUST mince garlic.
That part of the lesson alone took I don’t know 20 minutes? I have four year olds do this in class as a group.
The “class” ran late and the mom was super bitchy to me. I remember her grabbing the dishes and trying to basically tell me to leave.
I can’t say anything right? Because I’m a lower class working stiff. And I need that tip which I doubt she gave to me.
It’s not about the tip or the money. Which I have zero recollection of. It might have been the building I had to take the “servants” elevator up? But I don’t think so - I think that was another one.
It was how she treated me. Isn’t there a quote? We don’t remember what people say, we remember how we FEEL when we’re with them.
I do try to make people good as often as I can. It’s one of my favorite things to do!
This is why EVERYONE should be a server at some point. Until you’ve been on the receiving end of shitty customer treatment, it’s hard to know how awful it feels.
I wanted to shout: YOUR CHILD COULDN’T DO BASIC KITCHEN TASKS THAT PRESCHOOL CHILDREN CAN DO - IN A GROUP!! BUT YES BLAME THE COOKING TEACHER WHO HAS YEARS OF EXPERIENCE FOR THE FACT THAT YOU INDULGED YOUR CHILD SO MUCH THAT THEY DON’T EVEN KNOW HOW TO RINSE A VEGETABLE BY THE AGE OF 13 YEARS OLD. THAT WILL SOLVE THE PROBLEM HERE. YES DEFINITELY ALL MY FAULT THAT IT TOOK MORE THAN 2 HOURS TO MAKE A SALAD AND A PASTA DISH BETWEEN 3 PEOPLE.
I guess this is kind of the crux of what’s happening on a much, much larger level in our country.
A certain class is SO clueless and going around doing and saying and being HOWEVER THEY FEEL LIKE. And not realizing that they’re stepping on all us little people while they bumble around thinking I’M NOT HURTING ANYONE BRIBING MY KID TO GET INTO COLLEGE. I’M JUST HELPING * MY * SPECIAL SPECIAL CHILD.
Gee I wonder.
I remember when I used to party pretty hard. I took a lot of breaks and rarely drank for much of my twenties because I had the inflammatory bowel disease and was trying to heal it, and keep it away. But then I’d take it back up again.
When I partied too much, I noticed, I felt like shit physically. That’s obvious.
But at a very young age, I noticed: it’s not much fun when I do it ALL OF THE TIME.
There’s got to be that balance.
It’s so odd to me that so much of this country is so obsessed with indulgence. The Europeans take six weeks off a year, and work normal work weeks.
Here, we go to extremes. Work like dogs, then vacation hard. Don’t just have a beer in college, DO KEG STANDS.
For most of history, that 13 year old (gd she must be out of college by now, probably working an internship that’s unpaid, secured by her family connections) wouldn’t NEED to learn how to take care of herself, or navigate the world beyond her upper crust Manhattan world.
I was given too much responsibility. That’s not good either.
There’s got to be that balance, where the kids feel COMPETENT. I remember a male relative saying that to me, when I was fixing my huge backpack before living abroad and traveling through Europe by myself.
He said: I always forget how competent you are.
It’s not talked about much, but it's a really crucial thing to ensure kids feel before they enter the world. I try to make sure that kids are exposed to things that they’re ready for. I did this a LOT as a cooking teacher. If I didn’t feel their motor dexterity was ready, then no chef’s knife.
Are they ready to start making their own appointments by junior and senior year? Managing their own calendar? Understanding time management? Taking care of basic household chores on top of their schoolwork? Can they make a few basic nutritious meals without any coaching? Can they grocery shop and buy necessary items for a balanced diet? Can they work with a budget?
If the answer is No to all of these by graduation, they’re going to suffer while at school and in real life. There are all kinds of articles talking about this! It’s not like it’s just me.
We were kind of left to fend for ourselves in the 70s and 80s. It made us independent for sure. But a lot of us did too much as the first latchkey kids. Hence, the pendulum swinging the other way.
It’s such a fine balance.
[[NOTE: I don’t mean to shame anyone here, or act like I think I know how to do the day-to-day. It’s fucking hard as FUUUUCK. And they keep changing! And different kids need different things. It’s like a constant moving target. I’m more just thinking about the world, and what the kids are entering and what it means now that the pendulum is likely going to swing back the other direction to the kids taking on too much - which is already apparent. I definitely WOULD HAVE FUCKED ALL KINDS OF SHIT UP IF I WAS A F/T PARENT. Don’t think for one second that when I go on these rants that I think I would have done such a bang-up job. I would been too hard on them, too critical. I catch myself, and then I stop myself because I’m not the parent so I don’t need to get on them for every little thing.]]
Teens, they have to pull away and figure out who they are. That’s developmentally right on track.
It sucks if you get that all the time though. Teens.
They can be SO mean and snotty.
Sometimes I’d be “off” at my old job. Tired, grumpy, crampy, whatever, who knows.
They’d sense it, especially the tweens. They’d get viscous. It wasn’t fun, but I only had to deal with it for an hour or so.
If I had that all of the time at home? Ugh.
This is why when I train people to work with kids and teens, I always tell them: START OFF STRICT. They will never respect you otherwise. You’ll never have control over the classroom if they don’t respect you. Be clear about your rules, consistently enforce them and TAKE NO SHIT WHATSOEVER.
My ratio for strict to fun is much more extreme in the beginning - same theory as I said before - then I can be chill later, because they know I won’t put up with any shit.
When people want children - especially teens - to “like” them, they lose most of their authoritative power.
Nope. Not here to be liked. I’m here to be respected, teach and guide. If you like me, great. If you don’t? I did my job and that’s all I’m supposed to do. I will always love you. I hope you love me too, but it’s not about me being liked. I gave a whole lecture to my students in San Diego about this. I’m here to prepare you for the real world. Most of my students were Mexican immigrants. The skills I was teaching them in the kitchen were likely to be the only real thing that would get them a job. Nobody even discussed college.
One girl says: dang, that was deep Miss (kids often call teachers Miss).
I said: well, I believe you can do better and I’m going to call you out on that and challenge you to DO better. I want you to do well in life.
She was one of the girls that gave me wine glasses and a few other gifts when I had to leave the job a month early to move home because I was so sick.
They like it. They feel safe with an adult that says: No, don’t give me any that bullshit.
It has to be developmentally appropriate timing, of course.
But when we say: I expect more of you, we’re saying: I KNOW YOU ARE CAPABLE.
I BELIEVE you’re competent.
When we don’t call them out shitty behavior, we’re saying: this is all I think you’re capable of.
They act like they don’t like being called out, but they secretly love it.
Because it also means, we care about them. I care enough to do the hard work of calling you out.
It’s weird how I can be like that in a professional setting - very good with boundaries and being clear about how I should be treated - but I’m so much more wishy washy when it comes to the personal. No wonder I’ve been struggling so much! AND why I like to work so much! I know who I am when I’m working. It’s very, very clear what I expect or don’t expect.
I still think about how in California, someone told me they heard I was “expensive.”
At first, I had the initial female reaction: oh no!
Then I had the business person reaction: good. I am expensive because I’m fucking good at what I do.
That would be such a cool class! I wouldn’t teach it. I have to write these down in one place or they get all scattered: HOW TO NEGOTIATE, but for women. I’ll work on the title, obviously. I’d hire out for that one!
See? Getting some work done while blogging. Two in one. All about efficiency these days.
I’ve thought about filming little vignettes where I’m doing a task - super boring or medical related - and sharing some concept or idea or dare I say, wisdom (WHO ARE YOU TO CALL YOURSELF A LEADER, another white woman said to me in an activist group: WHO ARE YOU TO CALL YOURSELF A LEADER? WOW. Darling, whatever I bring up in you, it’s something YOU need to unpack with a mental health professional. If you don’t like ME, a rando, calling myself a leader, then you have some stuff to work out, that’s not on me).
I wrote down a list of tasks like shaving my head and talking about something unrelated. We have to do little skits like that in improv. Talk about one thing while pantomiming a completely different task. It’s so hard but I love it. I like doing things like that for my brain. Challenging it like that helps lay down new synapses and pathways which I desperately need.
Oh shit, I usually can remember what I was coming back to saying.
Just rambling about the kids, as usual. I think a lot about them! Even though I’m not a parent, I worry all of the time. I think I would have been SUCH a worrywart if I was a FT parent. Oh my. My friend sent a video of her kid doing crazy back springs on a trampoline - and I’m: eeks! He is the dare devil child. She’s: I’m so used to it by now.
I guess you grow into it. I can’t help but worry about all of them. I just do.
The world is so incredibly fucked up and getting more fucked up by the minute.
Most of all, I worry I won’t be there to guide / protect / teach.
I’ve been very proud of myself. I haven’t had any of the meringue cookies for I think 5 days - I’ve taken breaks before but never while they’re in my possession. I like the drive to the store - I know that sounds weird. But I’m trapped at home so much, that I often like taking a 20 minute jaunt at 8ish before doing my routine. Sometimes I drive home a weird way, or run a random errand JUST SO I can put off starting the routine and being trapped.
I hate feeling trapped.
I really, really do.
Oh! I have to explain the photo.
So I went to the appointment, the woman was bitchy, I got the advise from doctor. My friend drove me home and once I’m awake and have street clothes on, I figure: I gotta get something done. An entire free Wednesday afternoon? That’s unheard of these days. I chose not to join my parents at my dad’s appointment because well, I don’t have THAT much energy.
Oh! I had nothing in the afternoon at the last minute because I ended up canceling the 2:15 appointment because it wasn’t absolutely necessary once I met with derm doctor. That would have been FOUR appointments in two days. FUCK THAT SHIT.
Whenever I have a free afternoon, I immediately run through my list of errands and tasks. ESPECIALLY now with my dad sick, my time and bandwidth are so limited. Even though I’ve been good about not taking on too much with him, there is this huge spot in my brain worrying about him, focusing on his case, asking him if he needs anything while I’m in the kitchen, asking when his PT is coming next, thinking about how I can keep him alive…and grieving of course, what’s happening.
On top of everything else in my life, it’s just so much. I started to say it in my next podcast and I’m so tired, I forgot to circle back to it.
But my analogy is always swimming. And having my dad so sick is like someone throwing a 40 pound weight on me while I’m trying to swim through my own fucked up life. Whenever someone drives me, or does something lovely, it may only remove a 1/2 pound, but think about what that means if I have many people doing small things…yep, you got it! Each little thing, or kindness even, ride to an appointment, it helps remove that weight, even by a little bit. And that adds up to a lot.
I can keep swimming then. Even though it’s hard, I feel like if I REALLY need to get more weight off me now, I can ask. I’m getting better about saying No. Someone texted me asking if they could ask me a nutrition question - like this week - I just didn’t respond. I don’t have the bandwidth my lovelies. You can GIVE right now. That’s fine. If the exchange is equal in some way, I can do that in small ways if I’m feeling ok.
But I can’t just give anything out now without some sort of exchange.
I tell my bestie, my body is like a phone battery. And when I’m REALLY sick, and something is wrong, it never gets above say 20%. Sometimes it drops out of the blue. So I can seem totally fine, chatting and then I just get wiped out and I start to stumble when I walk, or stutter when I talk. Sometimes that happens slowly, sometimes out of the blue. It depends on how charged I was to start with. If I try to be social when I’m too low, I can suddenly just appear old lady like and have to hold onto tables as I walk by and I get confused easily about where the bathroom is.
If you’re not around me a lot, it can be very disconcerting to witness for the first time. It’s strange too - especially for people that have known me a long time - I can seem so ok and normal. And then I’m like: I need juice. I need help getting in my car. I don’t remember where my car even is.
One night, I tried to go out with some friends I don’t know that well. It was too hot, I dehydrated too quickly. I only had the protein drink and not my lemonade because I didn’t want to carry it. They took a long time to decide on a bar. By the time we got to one, I couldn’t find the bathroom and there was a line at the bar.
They didn’t know me well enough to understand what was happening. I said: I need a drink, a sugary drink. But it was all too late. I felt TERRIBLE. I knew I had to catch a Lyft and scoot out of there quickly. I was standing on the sidewalk trying to make sure I didn’t pass out. I couldn’t even order the lyft! I couldn’t see my phone because I had my contacts in instead of glasses (which I can remove to see small writing, getting old is SUCH a fucking blast).
I had to hand my phone to someone and have them order it.
It was awful. This is why I get scared to go out of my cocoon. And I wasn’t even that far from home that night!
The Lyft driver took what felt like forever. AND THEN THERE WAS TRAFFIC. LATE AT NIGHT. Oh Seattle.
I needed to get home, get broth in me, start a new IV bag, do all these things to re-balance my system otherwise I feel shittier and shittier and it takes me longer to get feel stable again. Too many of this, and I’ll never bounce back. That’s why I’m so scared to travel now.
A few hours. That’s all it can take to shift my whole system off-balance.
And yes, it is terrifying. Especially when I’m not around people who I haven’t educated. That’s on me! I get that.
It’s just taken me so long to even know WHAT to say let alone how to explain it in a way that is easily understood.
I love you my peeps my age who work at it - or somehow just get it on their own, they amaze me - but overall, it can be challenging on my end. Some don’t take time to understand disability. They get that I’m different right away, aren’t afraid to ask questions. But they don’t treat me like I’m weird or something.
If you don’t see that I * may * need extra consideration due to my health problems THEN YOU’RE NOT SEEING ALL of me. You’re only seeing the part that makes YOU comfortable.
Not seeing something about me that makes me different means you’re trying to treat me like I’m like YOU and I’m not LIKE YOU. I need YOU to think about how MY experience is DIFFERENT than yours.
Otherwise, hanging out with these people suck. It can feel really upsetting when people are acting like everything is fine WHILE I’m FALLING APART and scared and unsure how to get myself to safety.
It’s more than upsetting.
It can be terrifying.
This is why traveling or even going out is so hard on me. I have to navigate so many extra things. BUT I hate being trapped at home. There’s no room for error with me. If I dehydrate and faint - for the first time in my life, I’m very proud of the fact that I’ve never once fainted, not sick drunk or whatever - I used to do things like dig my fingernails in my hand to keep me upright or if I couldn’t find a bathroom in time, I use that athlete mindset, girl you are tough you can do this you’re staying upright you can wait for the bathroom, you can do this, cmon don’t lose focus keep at it, you’re strong get up and get to where you need to go.
I told my drivers about how I had to focus on the tail lights last Friday in order to not have the car weaving on the way to the appointment. One was like honey call me. I said totally, it was all so last minute. So grateful for these wonderful angels. I was SO wobbly that morning. I think I wrote it here. I had to have my hand out through the entire parking lot, next to each car to keep my balance.
It’s so SCARY peeps!
My systems don’t work right!
But if I’m rested and fed, I can seem totally fine.
Welcome to medically fragile / disabled / chronically ill.
We are like a box of chocolate. We never know what we’re going to get.
Damn it why did I have to say chocolate.
I’m seeing now that it’s another fine balance. Kind of like with kids, patients need to feel competent, but know that others will step in. And you need to learn how to ask for help when you really need it.
Not easy when you’ve been able-bodied most of your life! Trying to figure this out IN REAL TIME while you’re dealing with so many other things.
I told my mom, hire someone if you can’t do it. It’s not like being able-bodied. Your mind is taken over by so many things, it’s hard to manage regular daily tasks.
I’ve been doing this for over 5 years.
It’s too much. The mental strain. The physical demands of taking care of someone.
I’m my main caregiver AND the patient. And lemme tell ya. I have no idea how I’m still alive. Well, I know. Because of my angels, my crew, the kids.
If it wasn’t for them, forget it. I’d peace out. Sorry I know it’s hard to hear. But dang I’m tired of not being able to eat.
Ok, I’m going to try and run an errand even though it’s 85 degrees. I RARELY can get to this part of Capitol Hill for this ice cream. And if I don’t buy it, then I’ll weaken and buy some nasty doughnuts and eat the frosting instead. There is literally NOTHING of value in those calories, except that they are calories.
This particular vegan ice cream joint has a lot of different options - even beet juice in there, and someone said a kale one! She said it was sweet though. I’d like to finally make some savory vegan ice cream! It actually sounds easier to drive to this place on a hot day than cook! ME! Then I’ll get intp bed, I promise….
I don’t know I’m pretty tired. Fuck.
I’ll eat some sheep’s yogurt or avocado and THEN go. Maybe with an IV bag. No, that will take too long. Better to scoot out of here before traffic gets really bad. It’s already kind of “late” at 2pm. FUCK TRAFFIC.
I forgot to explain the photo still!
I decided to make my lemon ginger tea which I’ve needed to do. So I started it and then waited, I don’t know a good 15 minutes, for the large pot of water to boil.
I never noticed I had the wrong burner on that entire time.
My dad was on the couch with his oxygen. I’m so aware when he is sitting there. (Fire and oxygen! Geezus!)
I can’t think straight!!
Sometimes, if he is too still, my stomach drops. Then I see a little movement. I’m sure he would not appreciate me poking him or saying: you ok you ok you ok? Over and over.
The wrong burner for 15 minutes. And I used to cook professionally. Another reason I shouldn’t cook on my own too often. Lately, I’ve been turning the pan on with oil for my eggs - I like it to be hot so I can create this awesome crust at the bottom, my only other “crunch” besides meringues - and I forget and go downstairs, go to the bathroom, start another task.
Well, imagine how I write in here. That’s exactly how I’m functioning in my entire life. What was saying? What was I doing? And my dad isn’t too far away with a fucking oxygen tank! So I need to be VERY careful.
The photo says it it all. This is my brain.
This is my brain on…Watching a Parent Deteriorate.
What stupid anti-drug commercials those were. It’s weird. How society knows the are stupid, but when someone else comes along and says: those don’t work! It takes like 20 more years for anything worthwhile to enter the mainstream.
And then assholes get in charge and ruin whatever headway us educators have made.
Then factor in the Internet where EVERYONE is an expert on EVERYTHING, oye vey.
I’m going for the vegan ice cream. I can do anything. It’s just a matter of what price I will pay.
For now, at least. I can do it. I don’t know…. bed is sounding good. Writing in here makes me so sleepy for some reason. I think because the words aren’t driving me nuts rattling around my mind.
They are safe here. They will be SEEN here.
No matter what happens to me, my story, my existence will be permanently etched in the ether of the Internet (does that make sense? I hope so because it’s a cool sentence).
I’m off to Frankie and Jo's! I can do this.
I think I can.
p.s. I made it to the ice cream joint - NO LINE, there’s always a crazy line at night which is why I wanted to go mid-day, got a parking spot. The whole thing took about 45 minutes door to door. I’m in bed, giving myself hydration and going to try and tackle email. Although a nap sounds very appealing….