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Shima Veggies

@shimaveggies

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🌺 Mixed Uchinānchu farmer growing Okinawan veggies in the Bay Area, CA
🌺 Not farming rn due to chronic illness
🌺 hEDS, MCAS, mod ME/CFS, POTS, et al

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Haitai! My name is Corey and I am mixed Uchinānchu (my ancestors are from the largest of the Okinawa islands). I'm starting SHIMA to bring Okinawan vegetables and herbs to the Bay Area because I can't find them anywhere else. I didn't grow up eating much Okinawan food besides goya (yes I hated it as a kid, yes I love it now 🥰). It's only been in the last few years that I've spent time in Uchinā and started to learn more about the cultural foods that we don't have easy access to here in the US. Growing, cooking, and eating food is a huge point of cultural connection for me, and I'm excited to share that with all of you.

I'm going to be honest, I don't know what I'm doing. Back in October, I put together a survey that was going to help me make some big decisions about how SHIMA was structured. Once I became aware of the genocide in Palestine, it did not feel responsible to draw attention to anything but that. At this point, I have to launch the farm-- I have a lease on 1/4 acre, have started seeds, and I know that I need community input and support to take the next steps. However, this will not be a neutral space. Okinawa has a long history of imperialism and settler colonialism, and I believe speaking out against these forces is as much a part of my cultural heritage as eating goya champuru.

In the past few months, I've also realized that I have a chronic illness that severely limits my energy. I have a lot of big goals, but realistically this year is a trial to see 1) if I can farm without destroying my body and 2) if I can manage to not lose money while I do it. At the end of the year, I'll re-evaluate and decide if it's worth doing it all again. So if you're excited about having access to Okinawan veggies, please support the farm and bear with me as I figure out how to do this! I will be dropping the link to the survey I created in the next day or two and would really appreciate your feedback. Nifee debiru 🌺 by @shimaveggies

Weeeee actually posting in real time bc I'm procrastinating on the last bit of packing I really need to do

Traveling with a chronic illness is much more complicated (and I will never be a light packer again 🥲), but I've found ways to make it work for me! Road trips are definitely the way to start (though maybe not 19 hours) because you can pack a ton of stuff and don't have to worry about all the complications of flying. And if you drive a reasonable distance and it's not working out, you can always just go home.

It was really nice to break out of my routine and have a different view out the window, but I am very excited to get home and sleep in my own bed again. by @shimaveggies

Hi from Montana 👋🏻

I always do better here for some reason (really good air quality? No appointments? It's cold and dry (ew, but it helps me)?). The last time I went for a walk was also when we were here in July. I had a harder time recovering from the (19 hour) drive and adjusting to the altitude this trip than usual, so we've been here for two weeks and I finally felt good enough today to take this risk. Just enough time to hopefully recover before our drive back in three days 🫩

I didn't make it super far today, but it was beautiful and I'm so grateful that I can walk outside a few times a year! Without any kind of mobility aid today too, which is so wild. I have my travel rollator here with me which I will use at rest stops on the drive home, where I will happily be reunited with my usual rollator and wheelchair. None of them do great in snow and on trails though, so I'm really lucky that I can get by on my feet (or Bryan's) for short distances.

Went a little bit too far and PEM is calling my name, but I knew going into it that that was likely. Obviously I try to avoid PEM at all costs, but every once in a while it's nice to get PEM from doing something for myself rather than just getting PEM from doctor's appointments or stress. by @shimaveggies

Both of my parents work with people with disabilities, sooooo I really lucked out. This doesn't even begin to cover all the ways that they support me, I don't know what my life would look like right now if my mom hadn't basically moved in with us all of last year to help take care of me. Every disabled person deserves a family like mine. by @shimaveggies

Tips and tricks for covid boosters if you're also chronically ill:

🤒 If you have had strong reactions to Pfizer and Moderna boosters, talk to your doctor and look into Novavax instead. My doctor recommended I switch and it's made the biggest difference for me (but watch the spring expiration date if you also need it every 6 months!)

🤒 Call your pharmacy to see if they have the booster you want. My local CVS didn't have Novavax listed on their vaccine scheduler, but I called and they said they did have some and to just do a walk-in appointment

🤒 Walk-in appointments are great (and honestly, they're as fast as scheduled appointments in my experience) because you can try to go on a low-symptom day. I also try to avoid getting vaccines around my period since I know my symptoms will be worse around that time

🤒 Because I know I'm very susceptible to side effects, I only get one vaccine at a time. I opted for covid first, and will go back in a week or two to get my flu shot. This math will be different for everyone-- for me, the doubled up side effects would be worse than the energy expenditure from two outings, but that wasn't always true!

🤒 Electrolytes! I try to drink some extra electrolytes before my appointment because I know I'll forget later on once the side effects are starting to kick in

🤒 I don't know why I never thought to try this, but CBD cream on your arm reaaaaally helps with soreness at the injection site. Use code SHIMA at @purespectrumhemp for a discount on the CBD cream I use

🤒 For some reason, I was feeling pretty good after this shot until I decided to take a bath 24 hours later. I had some aches and pains and thought a bath would feel nice, but my body was not a fan and I got a fever, more aches and pains, was super nauseous, and went into a flare for another 2-3 days. Not sure what happened or why, but be careful and take it easy if you have a history of strong reactions

🤒 Don't forget to keep masking! The covid shot decreases your risk of severe illness, hospitalization, and death, but it does not protect you from getting covid in the first place. A well fitting (K)N95 respirator is the best tool to prevent cov by @shimaveggies

Can you imagine not being able to feel strong emotions? This is the reality that many people with severe Myalgic Encephalomyelitis (ME) face, where laughing or crying can lead to days or sometimes weeks of intense fatigue and full body pain.

If you want to learn more about ME, follow creators who are living through it:
@aditisroom
@quella_the_dizzy_octopus
@reakiro
@saveliznevraofficial
@nebulow
@franhaddock_
@thejournalingrat
@wecrunchme

Consider wearing well-fitting N95/KN95 masks again. Ideally all the time, but at least at the grocery store/pharmacy, doctors offices, and on public transit (to protect yourself and others, including disabled or immunocompromised people who can't avoid those spaces). Follow @michael_hoerger for real time covid data to understand why masking is so important (hint: covid never went away, and viral infections like covid can lead to developing ME)

Donate to ME mutual aid funds and research. Links in my bio to several Go Fund Me's in urgent need of support, or donate to @openmedf to fund ME research

Support your disabled friends! People with ME are sometimes referred to as the Millions Missing because when you get a chronic illness like ME, you slowly and quietly disappear from your everyday life. People with severe ME typically are bedbound, often cannot tolerate light, may not be able to speak, and may have difficulty even eating and drinking. Support needs are high, so having a friend who learns about ME, checks in regularly, and offers meaningful support can mean the world. by @shimaveggies

Quick Sunday morning trip to @chroniclebioai in Menlo Park. Appointment only took 20 minutes, and half of that was me chilling in the reclining chair because I thought I was under observation after the blood draw. I finally said "I definitely am gonna be fine" and the very nice phlebotomist said "oh yeah, you can leave whenever" hahahahahaha

I'm so happy that ME/CFS research is actually happening and grateful to be a part of it. They also are giving me a report of the results from my samples, which absolutely should be standard practice!! I don't know if they are still recruiting for the study, but I think next weekend is the last opportunity to schedule a blood draw, so get on it quickly if you're interested. If not, hopefully they'll have more research opportunities soon by @shimaveggies

THE BAR IS LOWWWWW

Anyway, if you're in or near Oakland and interested in lymph/cranio/Perrin work, the place I go to is called Lymphatic Flow Massage Clinic (on Grand Ave). Rachel is really great and you can do a free phone consultation to ask her any questions! If she asks, tell her Corey sent you (you won't get a discount and I won't get a discount, it would just make her happy)

If you have ME, have you heard of or tried the Perrin technique before? Or lymphatic drainage or craniosacral? I don't really know how any of these things work, but I think all three have made a difference for me 🤷🏻‍♀️ Obviously there are no cures for ME and I am never going to claim that this will help you too, but I also don't want to gatekeep a practioner who knows about ME and who I think has really helped me.

Also thank you @sam_heds for doing amazing research roundups!! Go follow him if you don't already, I learn so much from his posts. by @shimaveggies

I did go into a POTS flare because I was so excited to talk to people. And then went into PEM and spent the next few days barely able to move, but I am very slowly trying out being around groups of people again. by @shimaveggies

Anyone else? 😵‍💫

October Slide is the common pattern of chronic illnesses that worsen in the fall (barometric pressure changes, cold and flu season, cooler weather, etc can all be major triggers!). Mine ALWAYS hits middle of October like clockwork, but I guess it's early this year? Unless there's another fun surprise coming my way in a few weeks...

I was able to relax my POTS and MCAS management routines a bit over the summer, but it's time to jump back in and take them seriously again.

Please note, I am still lucky overall because my ME/CFS has improved to moderate. I'm still in bed most of the time, but I can tolerate sunlight and read and sit on the couch sometimes, which is worlds away from where I was just a year ago. Mutual aid links are in my bio to support some of my friends with severe ME who depend on community support! by @shimaveggies

Flashback to yesterday sitting on the sidewalk in front of my PT office, head on my rollator seat, slamming pills, and double fisting water and a protein bar, trying every single thing I could think of to get this flare under control

A few years ago, whenever I had any kind of flare, I had no idea what was happening so I also had no idea of how to fix it. Even though this was a fun new kind of flare, I knew it was definitely POTS-related because my heart rate was so weird. And because I had just been in someone else's car, I knew it was possible that something in there had also triggered my asthma and/or MCAS.

I was not expecting to run into heat intolerance yesterday (it was cold, I brought a jacket!!), but if I had, I have other tools at home that I would have brought. None of my conditions can be cured, so management is everythinggggg and I'm glad to have so many rescue med options (and also, if I'm going to have a flare anywhere, 5 feet outside my PT office is about the best place to have one)

🧰 My rescue med toolbox 🧰

For MCAS flares:
• Pepcid
• DAO (@omnediem DrinkHD, use code SHIMA)

For POTS flares:
• @vitassium Electrolyte Capsules (join their free chronic illness club to get 25% off)
• @saltstick FastChews (sister website with Vitassium, can order both at once)

Rx medications:
• Zofran (for nausea)
• Breyna inhaler (for asthma)

For hEDS flares/pulled muscles/subluxations:
• @purespectrumhemp Recover Salve (use code SHIMA)

Quick food/water:
• @alohamoment protein bars
• Hydro Flask Micro Hydro by @shimaveggies

Yes I obviously should have asked my Lyft driver to turn the AC on 💀 but she was wearing a sweater so I thought maybe she was cold, plus she was talking a mile a minute on the phone with no gaps, so I over thought it and spent the whole hour ride overheating and then couldn't get up off the sidewalk. My whole PT session was spent just calming down the flare so I was feeling well enough to get in another Lyft ride home 😭

Has anyone else had a POTS flare with really high heart rate variability like this?? Usually if I'm not feeling well, my heart rate will go high and stay high, but the rapid back and forth between high and low was new and weird. My blood pressure was a little high for me, but still in my normal range. My overall baseline has been declining recently, but I have no idea why this specifically happened.

Sucks to waste a PT session in a very expensive way, but everyone at my PT office is so amazing, and it was nice to have a weird episode documented at least. My PT measured my heart rate manually (I already knew it was weird from watching my Visible band) and said she could feel my heartbeat speeding up and slowing down over and over again, so it wasn't a measurement error. SOMEONE TELL ME WHY THIS HAPPENED PLEASE. Like is this a good sign because my body was trying to regulate my HR and bring it down? Or is this a weird new symptom I need to be concerned about? Really wish I had a PCP I could ask 🙃 by @shimaveggies