Who the heck is Kyoko Pandua?

Hullo!

You must be here to learn more about me. Keep reading to find out more about my illness/disability, hobbies & personality in general. Use the bold headings to jump around if you’d like.

My Disorder & Disability

Around 2017, symptoms aligning with Rheumatoid Arthritis (RA) began to overrun my life. Pain, swelling, fatigue…& a negative rheumatoid factor on my blood work. It took about 3 years & 3 different doctors before deciding that yes, I do have sero-negative severe RA; but that not all! I also have Fibromyalgia. By the way, when I received the Fibromyalgia diagnosis from a doctor who clearly didn’t believe in Fibromyalgia because he claimed there was “absolutely nothing wrong with me, you just have Fibromyalgia” like I was crazy & stupid. Then this same doctor wrote me off without telling me they don’t treat Fibromyalgia, just told me to leave….

*OK, sorry, but I just need to take a moment here to say BE CAREFUL WHO YOU CHOOSE FOR YOUR DOCTOR! Not every doctor will work for every patient. Additionally, as a female you need to make sure you are being heard & believed. The amount of times other females I know have been turned away by doctors only to find out they have a serious illness (including myself). Okay, stepping off the soapbox.

Flash forward to my 4th & current Rheumatologist who ran a specialty blood test called a Vectra score to measure my inflammation. First result was 52, a year later it’s 54… Well what the heckin crap does that mean? It means my joints are being damaged at 10% each year. I’m just gunna let that one sink in for a sec…

At this time my official diagnoses are Severe Rheumatoid Arthritis & Fibromyalgia. I take several pain medications as well as oral & IV infusion immune-suppressants for these. I have tried many, many treatments, but unfortunately we have not yet found what works to control the inflammation.

Ready for the plot to thicken?

The 2nd half of 2022 brought me new neurological issues including weakness, involuntary jerking movements, & as of the past month speaking & swallowing issues. We have been working for the past 4 months to get into a specialist & specialized testing done. So, we still do not know what is causing these neurological issues. Between my primary care doc, ER doc, & 1st neurologist it has been determined this is most likely a rare chronic disease. These issues have resulted in my not being able to work a traditional 9-5 job & until we have test results & see the movement disorder specialist(2nd neurologist), I wont actually know if I will ever be able to work again.

Why does any of this matter?

There are so many people regardless of age or gender that suffer from chronic illness, but feel like they can’t use their mobility aids in public or receive negativity for their illness. I have dedicated myself to being a self advocate for chronic illness & disability because it is infuriating to see others suffer from the stigma surrounding chronic illness, disability, & even mental health. News flash folks, ya don’t have to be “old” to have arthritis, chronic pain, or a disability. I strive to educate & reduce the stigma.

I have to use a 4-wheeled walker & a number of adaptive tools to get through my day & that is okay! I held off on the aids for longer than I should have because I was embarrassed & also all the dirty looks I would get. On top of that, there is a large portion of medical professionals that don’t even believe that Fibromyalgia is real! I feel like I wouldn’t be so hung up on this if…never mind haha.

More About ME

Alright bleak topics aside, how about some fun info? My pronouns are she/her & I identify as both Pan & Bi-Sexual. To be honest I was introduced to & came out as Bi-sexual before I knew Pan existed, so I usually just say I'm gay, that wraps it up nicely doesn't it? My husband & I are happily married since 2020; I would truly be lost without him.

I am a variety streamer on twitch.tv, mainly as my Vtuber with occasional IRL appearances. I also have a crafting business, but I’ll talk about that more under the hobbies bit. I’ve always enjoyed learning things, but I tend to focus on world culture & history (Victorian period back to Celtics). Of course, I also narrow that further to focus on Japan, especially since much of my life has been spent studying European history.

I have 2 rescue cats!

My all black void boy is Merlin, prince of darkness, void, & stupid, but loving.

My other cat is a long hair, black & white girl named Kiki, regal princess, watcher of the 2nd floor, & our personal cryptid (she is scaredy girl & hides a lot)

Hobbies

Okay, prepare yourself ‘cuz I have far too many hobbies - I did say I like to learn didn’t I?

First & foremost, I love to craft! If I had to choose a favorite, I think it would have to be crochet. I crochet constantly & you will find many of items for sale are crocheted. Something about watching your plush or blanket being made in your hands - I just love it! I do also sew a bit, I am a novice & don’t do much more than altering when it comes to clothes, but I want to learn more. I do own a cricut maker, so decals, stickers, paper cutouts, etc. I also dabble in resin casting & coating, but mostly to enhance other products. I also make soap & candles.

I tried to tell you…too many hobbies haha

My other favorite hobby is cosplay! I like to aim for accuracy in a lot of my costumes - making sure every accessory & detail is there. Having an interest in theatrical effects & makeup certainly helps flush out some the cosplays. Due to illness & disability, there is a limited amount I can do for my costumes, but what I can do includes wig styling, contact use, prop crafting, & shoe & outfit modifications. I don’t feel that Ive missed out on the crafting side of cosplay, I just have to understand my limits. Most costumes I buy still have to be altered in the chest or thighs, cuz cosplays aren’t made for curvy girls haha. I’ve started to learn LED lighting & body paint too. I can’t wait to see what I can do with my cosplay!

Speaking of cosplay - my husband & I started competing in cosplay competitions in 2022. We took home best Novice performance for Youmacon 2022 & graduated to ICG Journeyman class. I really like doing cosplay dances - picture idol dances catered to the character - which worked out really well for competition. Choreography has been frustrating, rewarding, & exhausting, but so so worth it! I want to do as much as I can for as long as I can! Photography come into play here as well; editing cosplay photos is so much more fun than editing regular pictures. Except cosplay is harder to wear so I don’t get much material to work with haha.

I would say I am a full-blown otaku. I love anime & have some trashy taste, but hey, it makes me happy. My wardrobe is slowly being converted to my kawaii/vintage aesthetic. I have another post coming about my favorite anime, which I will link HERE once posted. In fact I have monthly anime club on twitch.tv/kyokopandua. I assign you an anime season to watch over the month, then we have a live stream on Twitch to talk about it!

Yep, I’m a live streamer too! Usually I used my vtuber model, but we do have occasional IRL streams & hand cam streams! Schedules are posted on Instagram & Twitter. I want to start video editing so I can get some Youtube videos up as well! I really hope to grow so I can expand & improve all of my content!

Last but not least! I have a crafting business called Crafts of Love to provide lovingly handmade gifts at an affordable price. I have gotten to do one craft show before my health dipped, but I want to do more! I am also working to expand my Etsy store this year so I can start shipping items too! Eventually we will have integration so you can order from this website.

Final Thoughts

I had a uh…strange upbringing; I like to say I didn’t get a personality till I was 24 & that is true in a way. That was when I was finally able to feel comfortable & discover who I am. I feel Ive learned & grown a lot in the past 5ish years; I found what makes me happy & I learned what I want my life to be. Sometimes it’s hard to contain my excitement; looking back at how far I have come & looking ahead to all I’m working towards. Never really thought I’d be here you know? Somehow I found my business & passionate desire to be a content creator; and now I can pursue them without fear because I like who I am & I like being different.

The road is difficult, but that does not mean it has to end. Take breaks, give yourself some love, & be silly - it’s fun! Life is too short & there is too much negativity surrounding us, let me help you find some positivity & I’m sure we can help each other achieve our dreams!

🌸Stay strange & don’t forget to love yourself🌸