it's weird 8.22.19

I’m trying on a sweatshirt at Target here. I look much healthier than I have in past months. I didn’t plan on posting this - I was trying on different colors and had my nephew take photos. I didn’t end up buying any of them because what’s the point? I don’t enough opportunities to wear the cute sweatshirts I already own!

I’m trying on a sweatshirt at Target here. I look much healthier than I have in past months. I didn’t plan on posting this - I was trying on different colors and had my nephew take photos. I didn’t end up buying any of them because what’s the point? I don’t enough opportunities to wear the cute sweatshirts I already own!

[[NEW PODCAST is UP: It’s an interview with my friend Sean Cadin called “Vulnerable Men” - check out the links to articles on this page and listen to it on iTunes and Google Play!]]

I think something is stuck in my gut.

I’m getting a bit smarter (which isn’t saying a lot) about recognizing it earlier now. I’ve had a lot of pain since the needles-in-the-stomach appointment on Tuesday. But that didn’t stop me from getting work done yesterday! It’s better for my mental health to stay busy, but my body doesn’t love it. I have another busy day ahead. I’m interviewing a possible helper who happens to live on the island and then a doctor appointment. I think the interview could be promising.

Yesterday, I had a great interview with a woman who does cooking and recipe development! I wasn’t even LOOKING for that on the Care.com site, but stumbled across her profile and said: YESSS. She hasn’t done it professionally for years but I don’t need that. I told her I need the creative piece and the execution. I’ve been on the other side for so many years, it feels easy to work out those kinds of details.

I have so many ideas! I love love LOVE having people volunteer in the community but this path would be simpler. That way, if someone WANTS to volunteer, great. Fun addition. But if this woman works out - and I think she could - and I have her come by once or twice a month to prepare some things to put in the freezer, my life would be much healthier and easier.

Why has it taken me so long to get to this point? To feel comfortable saying I need the extra help? I mean, there are other circumstances at play, of course. I’ve needed others to be supportive of the project. I’m so fucking lucky I’ve got bestie who has my back and urging me to just hire who I need. I’m SO FUCKING LUCKY.

She is right, of course,

Oh gd I’ve been typing this whole time with an animal on my arm. His mind isn’t so sharp these days, my oldest kitty. I’m trying not to stress but dang, another loss would not be easy. He drives me crazy but I want him here next to me. It’d be too much. Watch, he’ll live another three years. I’ve been thinking about the dog thing and realized I can’t get one because of being dependent.

I didn’t understand what it was like on this side AT ALL before. To be truly dependent AS an adult. It fucking sucks man!! It sucks so bad! I want to go get a job and an apartment and a life SOOOOO bad. And I can’t. It’s nothing on the outside that’s stopping me. Everything on the inside. But if and when I need to move, I can’t have three animals! It’s best if I have one or two. Sigh.

Sucks.

So I think something is a little bit stuck in my gut. Full confession: I bought those gross oreos (they keep coming out with new flavors and I can’t help myself! Though I always go back to the lemon) and ate the filling yesterday. I’ve managed to stay away from the Trader Joe’s cookies. When they’ve been connected to pain, it’s not that hard to stay away.

I feel weird posting photos of myself after a long period of not posting often. The above photo is me trying on an extra-small sweatshirt. This is not a bragging point for me. It’s actually very upsetting. Because this is me “up” on my weight right now!! The steroids I’m currently on make me puffy which makes me look more like my old self. I have photos from the last few months - I think I’m going to use them to educate people about disability and invisible illness. Too many people make too many assumptions. The main assumption? Thinking that weight loss is ALWAYS a GOOD thing!

I’ve been able to stay in the same two pound range for several weeks now, though again, the steroids help with that. They help me retain fluids.

I’ve decided to go for the trip in two weeks. I’m already starting to pack. I get very nervous that I’m going to forget my medical supplies - that’s my biggest issue - so I started organizing them early. I’ve got to get out of this house for even a short time, or I’ll go really dark. I’m always having to make decisions about which to prioritize: physical health? Or mental health?

Back and forth back and forth, I go. So many tiny decisions that can lead to huge problems.

I have a friend in Whidbey on call if something goes wrong. My uncle has his plane ready to go. I have an activist friend on the actual island who has a car and will make sure I’m ok. I will meet him and his wife for tea at some point so I’ll make sure to have contact with supportive people. I’ve alerted the place I’m staying and they said they can make sure to have protocol in place.

I didn’t do any of this when I went to California in February when things went haywire. I’ve learned my lesson. I can’t ever go anywhere for more than few hours without alerting the people around me to keep an eye on things. Sometimes I don’t even know I’m deteriorating until it’s too late. I’m slowly creating my list of warning signs: I get wobbly, can’t stay balanced easily especially when I stand up too quickly - which is SOOO weird because that’s my main athletic gift! I’ll stutter my words, or struggle to find words (yes THOSE WORDS that haunt me all of the time, then escape me!). I’m spacey and have trouble figuring out what I’m supposed to do, which is the scariest part.

It’s been a work in process, to figure out a new disability at mid-life in REAL time while so much is going wrong in my own world and the outer world. I see the news - I never look away, the least I can do is feel the pain of those that are suffering, take that information into my heart and let it fuel my life force, reminding me that I have to keep moving forward even when I don’t want to, which is a lot these days, I’ll admit, I think all of the time, how am I going to have this life that’s mostly doctor appointments and laying in bed, or trying to eat and digest? This is in large part why I’m relenting and getting more help, I need others to help with basic tasks or I’ll lose my shit, it’s not a life, what I’ve been doing lately. I can’t. I can’t just be a medical patient 99% of the time. I’ve got to step out of that role and be just JULIE. Whatever that looks like now.

I’m trying! I really really am trying! Trying to get my head screwed on straight - I’m no good to those that are suffering, or the kids, or anyone else, if I don’t have a clear head and strong mental health.

These kids.

My nephew is really upset about the fires in the Amazon. I would have never thought in a million years, he’d be the kid that would get so upset about this. But they do that! Surprise you. He is a middle kid - they’re often “with the people” people. They find their identity outside of the house, according to the many birth order books I’ve read over the years. So fascinating.

I posted another photo of myself on my personal Instagram today. I feel like I look a lot older. I’m at the age when things start to change a lot, I get that. I want to unpack this feeling though and really uncover whether I’m incorporating too much of the agist bullshit in our society or what. I know I’m still doing just fine! And the photo is TOO cute of the kid. Maybe we’ll FINALLY get a doctor in the family.

Getting older is a trip. In a lot of ways, it feels like a relief for me. I like looking like more of an “elder.” I always had so much youthfulness - which I know I still have! but with the gray hair and starting to look like an actual grown up…it feels more authentic for me. The gray hair feels more reflective of how I feel on the inside where I feel more like 85 than 47. I still can’t believe I’m going to be 48 years old in a couple of weeks! What the hell? How does that happen?

When it comes to the aging thing, it always boils down to this: I’m fucking lucky to be aging.

The alternative? To look forever young in a photo on the Internet with the last year of my life next to my name?

I’m so lucky! WHY am I still alive though? I can’t help but go down this road these days.

My friend that had Stage IV cancer last summer and made a miraculous recovery?

She’s back in treatment. Two daughters - one still in high school. I hear other stories too, of course. When you’re a cancer survivor, it’s part of the deal.

I look at that photo on Instagram and think: how lucky am I to still be here and watch these kids grow up. It’s the daughter of my youngest cousin, the one I helped raise the most. I spent every day with her for the first few years - until she was about the age of her kid now. Baby girl’s baby girl.

They are different this generation. I’ve never seen anything like it. So serious, able to focus in ways I’ve never witnessed in any of the other kids from the past 40 years. Astounding. But not surprising.

Dang I didn’t feel like crying today. Sometimes it feels good to get it out. Sometimes the tears just come. This is why the estrogen is so crucial! It took me a long time to realize that the times I was crying on the Internet ALWAYS synced up when my estrogen was too low. It’s not enough, what they do for women, starting when they’re young all the way up.

Dang, I always say, women should be shitting gold in menopause after everything we go through. But no! Just more bullshit. And the mental health piece! Besides the cognitive issues and the energy, and sleep! All of it so important.

Of course, the Patriarchy wants us deranged and crying.

They certainly don’t want us on things that help us stay sharp, and strong and muscular. That testosterone! That’s why it’s easier for me in Southern California - they use the hormones much more down there for anti-aging. Up here…not so much. I can’t maintain my muscle without the testosterone - when it was zero back in 2016, I was injuring myself all of the time.

This is such a huge piece that could be addressed in older populations! Now, I can twist around, grab something from the backseat in the car, and think nothing of it. I stretch a LOT so that helps. All of it so important. I have all this data! So much information that could literally save people so much pain.

I’ve got to get my shit together. Sarah and I are working hard on all this stuff. I will have the organizer come back soon to help finish getting everything streamlined. It’s the only way to do it these days. I’ve GOT to be streamlined and organized, or my mental health AND physical health is adversely impacted.

It’s hard right now because I’m at that point when stuff EVERYWHERE.

Emotionally and physically, it’s challenging to yank all the baggage out and look through all of it: do I want to keep this? Do I want to keep that? Who am I now? Do I NEED this?

I’m finally making peace with throwing away a million little pieces of paper, which has made me feel nuts - so much fear around sharing these things. So much fear that I’ll share about my brain, the many ways I’ve felt different my whole life, and that people will back away slowly.

The alternative is living an inauthentic life and I can’t do that anymore. It’ll kill me.

I struggle with wanting to stay here, again, I’ll admit it. None of this is easy.

But I don’t WANT to leave. I just don’t want to live with so much pain and struggle. That’s going to be the core of my mental health video that I’m working on. I wasn’t sure what would come out next, but I guess that’s the path. It makes sense. I think i’ve worked out the look and feel of it. That took a LONG time to come through.

Sigh.

Oh! I wanted to clarify that I don’t think I did much when helping “raise” these people all over the city. I mean, I’d come and go most of time.

I was, however, their main feminist in the midst. The one that said: no, man, that’s not cool. Over and over again.

I realized that the reason why the dudes don’t come on my threads and say anything is because I’ve let them all know for years what’s ok and what’s not ok.

That was not fun - being a closeted feminist for all these years. Stuffing it down. Ugh! No more!

I’m all over the place today. I don’t feel so good. There’s something out of whack - what else is new - it’s such a game of whack-a-mole. One thing gets addressed and the next one comes up. I keep thinking that I’ll get to turn a corner, but then there’s something fun and new!

I need this trip so badly. It’s my birthday present to myself. I’ve gone up to this area for my birthday probably…six or so times over the years. I discovered this place many years ago in a magical way. Something about this area of the state is very healing. I need to breathe in the trees. Stare at the water. Hang in nature. Wake up to beautiful deer outside my cabin. This adorable teeny tiny cabin - I’d totally live in a tiny house, I love all things miniature, don’t let me walk down the travel size aisle at a store like Target, it’s taken me years of learning how to restrain myself from buying a product I LITERALLY never use simply because it’s so little and cute - the whole experience will be so good for my heart and soul.

If things go awry at some point in the next year, I’ll be so glad I went. Maybe I’ll bring my watercolor paints! I never do that anymore and it’s so good for me.

I don’t know how to explain how nature feels like my religion. Judaism is all right, I like aspects of it. It’s originally a matriarchal religion which is awesome, but there are parts that have been warped by culture that are hard for me.

Ok I should stop writing. I’ve got a cat with dementia who I keep getting up to feed, but then he doesn’t eat.

I miss my dad. He should just be here. I don’t know how else to explain it. I want him here to consult on the stupid curtain rod project. I’m so close to getting it done, and I can’t seem to pull the trigger. I felt that way when I needed to order vitamins from this site where I get discounts because of the nutrition degree. He and I always ordered them together.

He’d know exactly what to do. My older brother is super handy, but the younger ones lived a different life than me and him. We didn’t have much when we were young so we did more fix-it projects around the house with our dad.

OMG I just remembered a funny story about my dad. I really want to start sharing some Marv stories on FB. People would enjoy them so much!

He’d make EVERYTHING when I was young. I took ski lessons - which was around the time when we didn’t have to pinch pennies anymore, obviously what an expensive sport - with a bunch of kids who come from a lot. One was the guy who is married to a doctor but wouldn’t give me a referral! That’s how fucking far back he and I go - second grade and the ski bus. Me, him and another old friend, and all of our older brothers would go to Stevens Pass every week with these kids from the wealthiest neighborhood in Seattle - or it used to be - girls with names like Lexi and Ashley on the bus with us. I had a crush on a guy named Ned! Hahahahaahaa I forgot about that. I’m such a dork.

I had a fucking spacer in my mouth at that time - I was maybe 10 or 11 years old? One of the kids has the same issue now. Out mouths too small for all the teeth coming in. It went across my mouth between the upper molars and IT HAD TO BE TWISTED EVERY NIGHT with this teeny tiny key (yes I loved that fucking little key though I hated the contraption) to widen my mouth. Big tongue and small mouth, bad combo. Well, not for one activity….I know I know I shouldn’t but this is the kind of bawdy humor I’ve kept hidden all these years.

ANYWAY, I spoke like such a weirdo for the first couple of months until I got used to the spacer thingie. The rich kids thought I was SUCH an odd kid. I had GLASSES that were bifocals - because my mom put me and my brother in a study where they gave us drops that don’t allow you to read in the hopes that it would stave off the near-sightedness that ran in the family (IT DID NOT WORK, sometimes I wonder if it made it worse - we did this FOR TWO FUCKING YEARS don’t mention it EVER to my mom, she gets very upset that she made such a bad call, I didn’t exactly need more reasons for kids to think I was a weirdo), the kind you get at the eye doctor, I had that EVERY DAY, and yes, this is all fucking true, plenty of witnesses.

Red hair, glasses with bifocals, talked funny, AND the one with the least amount of money.

This is the real point of the story. My dad made a “boot holder” - it’s a contraption that holds the ski boots together so you can carry them easily while also holding skis on your shoulder. He made it out of ROPE and ELECTRICAL tape, probably some duct tape in there too. Ha! The nickname “tape guy” is good for two reasons. Old joke about duct tape.

Anyway, it was super uncomfortable, hard to hold with my gloves and it chafed my hands if they were bare. It was a long walk for a super small 10/11 year old from the bus to the lifts.

One day, we were in a ski store and I saw the nice “fancy” boot holders. I’ll never forget it. They sold for $3.99!! I was like DAAAAAADDDDDDD. My mom said: um Marv, we’re buying her the ski holder.

When they first got married, he made everything out of coat hangers, according to mom lore. He was very McGyver like that.

I have a little bit of it but nothing like my dad.

I’ve got to go!! Hungry cat! Interviewing someone in 15 minutes at the house and then a doctor appt so I should probably put on some regular clothes. I think my cousin is coming by too but he is mysteriously difficult to reach while traveling from Israel.

Long day ahead. I’m already tired.

Your rambling friend,

Jules