#but things like scoliosis I'm not... attached to? There's no positives

[coldwind-shiningstars]

I know I've been talking a lot about Visibility lately and how I feel grateful for being visibly disabled because it... sort of acts as a filter, and also i don't have to Come Out

but it's still an adjustment every time? and it's hard to not feel self concious. i went back to physio the other day because the providers there are vaccinated now (also pelvic floor stuff) and we were talking about what had changed for me health wise over covid, and she made some comment about being able to see my scoliosis had worsened (like, through my shirt, and the waistband of my pants being tilted because my hips are) and I had just never before been aware that this was something people could See on me. I'm pretty sure most people don't notice it! I'm pretty sure she only noticed because she's trained to and was specifically looking for it.

but I just was Struck with profound horror at Being Observed this way.

[newhologram]

New's floor desk FAQ!

Floor Desk video links: •TikTok •Tumblr •Twitter •YouTube •Instagram Floor Desk part 2 (setup update) •TikTok •Tumblr •Twitter •YouTube •Instagram Thank you for all the comments and shares on my accessible floor desk setup tiktok. I'm glad so many people are inspired and brainstorming how to change their space. →𝐅𝐢𝐫𝐬𝐭 𝐚𝐧 𝐢𝐧𝐭𝐫𝐨 𝐭𝐨 𝐨𝐫𝐢𝐞𝐧𝐭 𝐧𝐞𝐰𝐜𝐨𝐦𝐞𝐫𝐬: My name is 𝐍𝐞𝐰 and I do disability/chronic illness awareness content, vlogs, Let's Plays, J-pop translations, and more. I've only recently started putting focus on shortform tiktok content. If tiktok brought you here, hi and thank you!! Please make sure to check my other socials for more content.

😇If you find this information helpful or enjoy my content, please share and consider becoming a Patron or tipping via ko-fi. https://linktr.ee/newhologram

★彡

♿Backstory in case it's useful for anyone to relate their health problems to the possible benefits of a floor desk:

I'm a spoonie. My main diagnoses are ulcerative colitis, type 2 narcolepsy, fibromyalgia, myalgic encephalomyelitis, and a cluster of spinal issues (upper cervical instability, osteoarthritis (bone spurs), degenerative disc disease, 2 bulging discs in the neck, scoliosis, 2 tailbone injuries as a teen that still give me trouble) Update: turns out my mysterious severe back pain was actually most likely endometriosis. Back pain isn't always actually the back!

Though I lived with a lot of random chronic health issues since childhood, it was in 2013 when my body seemed no longer able to keep up, and my level of functionality went from rough and miserable to me needing the ER multiple times a year for horrible high pain levels. It's now my 9 year anniversary (2022) of being "officially" disabled (really, many of us were always disabled but didn't get the support we needed and then ended up even more disabled as adults). I really can't sit up for long without bad consequences and using my arms/hands gets torturous fast. I can't work much right now. Even going to the movies is very painful for me and requires recovery time after. To go to my day job or even visit someone for a few hours requires me to pack a lot of items just to manage my pain, most of which is in my spine and radiating out into my limbs (nerve pain is brutal.) So I spend a lot of time flat on the floor at work and wherever, honestly. Thinking back, I've had back, shoulder, and neck pain since I was 7 years old. There are many microtraumas throughout my life that I'm guessing may be responsible for the accelerated degeneration of my intervertebral discs, and the atlas subluxation, but another part of it was bad posture--from not just being neurodivergent and standing/sitting awkwardly to begin with, but being completely attached to being on the computer all day and night to cope with life, trauma, etc, meant sitting for long, long periods of time in the same position at my desk. Forward head posture doesn't take long to start messing with your health. I've devoted a lot of time and effort to correct the curvature of my neck. It's hard work, but I'm still in so much pain, because it's only one piece of the spinal puzzle. (Working on my posture didn't heal my discs, big surprise. More on that another time.) Please feel free to ask more questions wherever and I can add them to this list!

Q: What inspired you to make this change? At the beginning of lockdown, my day job was trying to think of ways to have us work from home long-term. It didn't end up working out, but it made me rethink my space since I was anticipating working long days in my room. I saw a random health video in which someone's advice was to "sit on the floor as much as possible." And then I remembered all the pictures I'd seen of Japanese teenagers rooms, where they had a small desk on the floor to do homework, play video games, etc. My host family had a more Western-style house but I still saw so many things that were done on the floor. It made sense, since whenever I took a break from the computer because I was in too much pain, I always went straight to the floor. At work, I'm on the floor as soon as the director calls cut. I remembered learning more about how many different cultures still mostly sit on the floor, and how easily babies can squat and move around on the floor as well. I thought back to being a kid, sitting on the floor in front of my TV to play video games. I tried to squat and immediately fell over. Then I watched a video called Why We Sit On The Floor (Furniture-Free Living) and was immediately convinced. Since then they've made a follow-up video: Sit On the Floor, Improve Your Health | Floor Chair & Desk Setup (Guide)

Here's an additional video I saw recently: Minimalist Desk Setup | Floor Chair & Desk (Weird.)

Q: Where did you get the desk and other items?

I bought the wood and paint for the desk and it was built for me by a family member. After spending time researching, brainstorming, and sketching, I was going to buy a Japanese style floor desk on etsy (I can't find the exact seller, sorry!), or maybe even try to order one from Ikea in Japan. I would've spent about $300-$500 which was going to be rough to pay off.

So cute.

But my family member suggested saving money by building it, since it was a pretty simple design. So I spent even more time taking measurements to be absolutely sure I was going to be comfortable with the height. Sit on the floor and mime like you're typing on a keyboard. I based the height around that initially, but with my butt on a pillow, so I got it higher, which ended up not being a comfortable height for the keyboard. More on how I adjusted this in a second.

Luckily someone already had the most perfect easy DIY desk instructions to base all of this around as well: Simple Floor DeskIn total, for the wood and the paint of the desk itself, I spent $116. Here are the other items in my setup:

Reclining floor chair Not sure if they have pink in this one right now but there are other versions in pink.

Giant mousepad Keyboard Keyboard tray Tray for food Lap desk The initial look was actually this:

⁽ᵀʰᵃᵗ ʳᵘᵍ ᵈⁱᵈ ⁿᵒᵗ ˢᵘʳᵛⁱᵛᵉ ᵃ ʸᵉᵃʳ ᵒᵐᵍ⁾

I had thought sitting in the chair fulltime and using the keyboard that way was going to work for me, but it ended up being awkward and painful too. The goal was to CHANGE my sitting posture. So I got the pink tray to put under the desk as seen in my tiktok and it worked out perfectly. I still can't sit up for very long but I try to do a little a day so my back muscles don't atrophy too much from all the reclining. I spend most of the time reclined. The very morning of my tiktok post, I was gifted a really cool lap keyboard tray. It has a cushion so it's comfortable, as well as a pull out mouse pad/tray on either side, a phone slot, and iPad slot, and a removable light. I've been loving using this to be able to sit up and use my keyboard with my back supported when I can't sit directly on the floor anymore but I'm not quite ready to recline yet. It's also great for writing in my planner at night. (pics/video soon)

Q: Don't your legs fall asleep constantly?

They did way more at my regular desk. At least on the floor I can constantly change my position and relieve it, so it's not really an issue anymore. Q: What's the brand of the posture corrector you're wearing in the tiktok?

It's by Vicorrect. I did a short tiktok about it too! I'm 5'0" and ordered the small/medium size. •TikTok •Tumblr •Twitter •YouTube •Instagram Q: Where did you get the star blanket? It's from Daiso, but I got it many years ago. Q: Where did you get the shark sweater I have no idea, it's almost 10 years old. T_T Sorry Q: You said your bed was also on the floor, where did you get it?

It's a Japanese futon set. I've had it since late spring 2020 and it's holding up great. I try to air it out in the sun every few weeks to keep it fresh and healthy. Q: In your 2nd floor desk video, you use some kind of tool on your neck. What is it? It's a myofascial release tool, I use it to break down calcified adhesions in my fascia as well as to release muscle spasms. It's small-sized FasciaBlaster. This product is marketed for cellulite (I do not recommend using it for that) but I knew it would be perfect for me to manage my neck and shoulder pain on the go. I tend to use actual gua sha tools more than this though (every day after my bath). My recommendation is to look into stone gua sha first. I have stainless steel gua sha tools that are amazing but they're a little more hardcore and will leave darker marks. Don't do gua sha if you have issues with blood clotting!! Do your research and consult with your doctor.

Q: I have xyz spinal problems too, would this be good for me?

I can't say for sure what will work for you. This setup is definitely not for everyone. It took a little bit of trial and error at first to get this setup working for me at max. I would say take your time testing things out temporarily on the floor before making any big decisions. Also remember that a new desk is not going to be a magic fix to your spinal issues. It might help a lot, and also give you more freedom when flaring like it does with me, but good posture and movement habits have to be worked on as well. ⭐This includes sleep posture! I did a video about how I sleep with my spinal issues too. •TikTok •Tumblr •Twitter •Instagram The cervical pillow featured in this tiktok is a SleepRight. Also, stop looking down at your devices!!! I know this is tricky especially if our pain makes it hard to hold things up at a healthy angle but looking down so much contributes to forward head posture. Be mindful that you also don't recreate that posture when you're reclined and looking at your devices. I always angle myself so that I'm looking UP at my ipad/phone. I try to be really careful about it, because even just a few minutes of looking down has my neck screaming. ⁽ᵂⁱˡˡ ᵃᵈᵈ ᵐᵒʳᵉ ᵈᵉᵗᵃⁱˡ ᵗᵒ ᵗʰⁱˢ ᵃˢ ˢᵖᵒᵒⁿˢ ᵃˡˡᵒʷ⁾

[ae-diaries]

My Life Testimony

Warning: Long post ahead

The content of this blog has me holding a secret I've kept hidden for a long time. I'm a bit hesitant to share my personal story because others (who knew me already) may be shocked or turned off 😅, but hopefully, the thoughts would bless someone and help you face your weaknesses and rise above them. This is a celebration of the greatest miracle I received from God. I never thought that miracle was real, until circumstances proved that it is possible. 

Foremost in my mind is when I was a high school kid. My life was symbolized by the microphone; I’d been exposed to sing in front of a crowd, be it in school or amateur singing contests. It's not to boast but it felt like I was a singing sensation back then, others dubbed me as 'songbird', 'sweet nightingale' to name a few 🤣. But when no one's looking, I felt, for lack of a better description, just off. This was caused by a certain physical condition that tear down my self-image. 

It all began when my mother noticed that I had an uneven shoulders when I was 13 years old. Later on, I was diagnosed with scoliosis measuring a 20-degree curve, and so my doctor from PGH gave me various stretching exercises and required me to wear a brace to prevent the curve from worsening or else surgery awaits me.

I freaked out inside. At the back of my mind, I wondered, “Why me?”. From then on, a hidden scar symbolizes my 'private' life. People might not notice it, but really I was riddled with inferiority complex and lack of self-worth. Nakakaiyak isipin, imagine ako lang bukod tanging estudyante sa private skul na may ganitong klaseng kundisyon. How I pitied myself. Parang ayoko nang lumabas. Hiyang hiya ako. 

I usually cried and pahirapan pa every time my mother would be putting the brace into my body, kabilinbilinan niya wag ko daw aalisin para daw mapabilis paggaling ko, but there was this one time, while I was on my way to school, naisipan kong dumaan muna sa haus ng classmate ko para lang ipatago yung brace ko. And it happened many times. Ang bigat nyang dalhin, di lang sa katawan kundi pati narin sa kalooban. Later on, they found out what I was doing, until wala na silang nagawa sa tigas ng ulo ko. Fortunately, my classmates did not bully me in school; however, I was still very conscious and afraid that my crush would see me like a bionic kid. To this day, I have never told my parents about this reason. You know as a teenager, I was overly sensitive by the opinion of others. And that's all that matters to me. I didn't think of the consequences of this action. 

Fast forward to 2012, sabi nila end of the world na this year (according to Mayan calendar), feeling ko katapusan ko nadin when I went back to the doctor and learned that the deformity progressed to over 50 degrees. Reality finally hit me! A major surgery was needed to correct my S-curved spine. Why I didn't just wear that darn thing? I must admit nagpabaya ako as I was trying to live like a normal kid. At that time, I was already employed in my first job so I filed for a two-month leave. Luckily, my very understanding boss approved it. I also had an amazing orthopedic surgeon, Dr. Teodoro Castro, who explained to me the procedure (though it was as clear as mud to me). He was very reassuring, so I didn't get scared. 

And when he asked, "Kelan mo gusto magpa-opera?," Without a second thought, I replied, "Kahit po bukas na doc!". My thoughts were, "If not now, when pa?"( I felt like I was running out of time.) His eyes bulged upon hearing my immediate response! And so he set the schedule to May 16, 1 p.m (which I spent at Sta. Teresita General Hospital in Quezon City). 

It was exciting, really, though it had 'Final Destination' feels. Andaming 'what ifs', what if di ako maka-survive? Bigla kong naisip talagang 'life is short' at ang dami ko pa palang di nagagawa sa mundong ibabaw such as makapag-serve kay God through joining a spiritual ministry, to travel for a cause, makapag-abroad, makakanta sa tv, makita si Regine & Sarah, magamit license ko to teach students, maigala ang magulang ko, and to have my own family. Sana magawa ko pa ang mga ito after post-op. 

More so, I felt my family's collective fear; I could actually hear the loud beating of my parents' chest when they signed the waiver 🤣. My father had worries that my voice might deteriorate after the operation. Laying in my bed and knowing that I may be that close to dying, I delivered my prayer of surrender to God and remained fearless. The comforting lyrics of 'You made me Stronger' by Kelly Clarkson became my fight song while in the hospital.

Waking up after the operation was the highlight. Being groggy from the anesthesia, I opened my eyes, feeling like it's just a continuation of my short sleep. I saw the nurses and my family - patiently waiting for me to wake up for almost 6 hours na daw. The first thing I asked was, "Tapos na?" (many times). I felt a huge sigh of relief when they uttered the words that struck me to the core, "Oo, tapos na." S*** I couldn't believe my ears; I was flying with joy! For years I have prayed for this miracle. I wanted to shout and do any dance challenge, 🤣 but how could I do that? They were preventing me from talking yet or make any movements because a mask was surrounding my nose and a lot of apparatuses were attached to my body. Later on, I learned that my younger brother cried after seeing me survived the operation. May kadramahan din pala si brother na lagi kong kabangayan 😂. While the success of my operation wouldn't be possible if it weren't for the assistance provided by my father's company, DMCI Corp. That's why I'll always be indebted to their big boss, VAC (May his soul rest in peace).

My healing lasted for almost nine months. I never suffered from complications, just pure torture and regrets na sana di nalang ako nagpa-opera (huhu). This is no exaggeration but dinaig ko pa talaga ang na-cesarean. On the first month after my operation, I became disabled and reached levels of pain I thought never existed in human experience: It was difficult to breath; I could not stand and walk on my own; I became excessively skinny because of drug intake - this was a legal drug prescribed by my doctor which can remove the pain only for 4-6 hrs. It felt so pathetic and frustrating to see myself in front of the mirror. No matter how much I tried to be positive, my insecurities gripped me down again and again to the point of questioning God: "Is there a hope for me?", 

"How come others could breathe and walk so well? During these times, inggit na inggit ako sa mga taong nakakalakad at nakakahinga ng maluwag. Feeling ko life is so unfair. Somewhere deep inside, I believed I was ugly, that He really didn't like me and it was His punishment for all the sins I did in the past. As I poured out my grief before God, a question popped in my head: “Mira, give me reasons why you should remain grateful?.”

“Seriously, how can I be grateful in times like this?.”

But in those agonizing moments, a light of hope from my parents’ eyes illuminates my darkness. 

In all the times that I cried and complained, I never saw them get too tired to feed me or serve me even if it would make them uncomfortable to make me comfortable. I couldn't imagine how they felt when I looked down on myself. Aside from my parents, my siblings, concerned relatives and genuine friends also never left my side. It's as if they became my extra pair of legs when mine refuse to walk. And my heart is full of gratitude today because they have loved me during the times that I didn't love myself. 

I'm living a normal life now as if nothing happened but others observed that except for my angelic voice 🤣, I tend to become forgetful and a little bit of deaf (Yes to this level) - this was probably caused by my extra dose of antibiotics intake 🤣. They noticed that I walk with lightning speed, as if may hinahabol daw ako lagi - maybe subconsciously, this has something to do with my life goals. Yes, I do get tired easier that's why there are some things that I must not do such as lifting heavy objects, sport activities (except for swimming), washing a mountain of clothes 🤣, bawal ma-stress and ma-exposed sa extreme cold places 😅.

As they say, true wisdom is learning from your shortcomings. For everything that I'd been through, I realized that there's a lesson hidden underneath the pain and it was God's way for me to:

(1) strengthen my faith - It was through this difficult times that I also underwent a 'spiritual surgery/enlightenment'. It has helped me find my stride in God and pray like I have never prayed before (for I know nakalimot ako). I didn't know all His plans but surely He was turning my brokenness into greatness. 

(2) love myself, invest in my relationships and create good memories - The whole discernment gave me the courage to keep progressing. I began to accept my imperfections, pick up my self-esteem, and do the things I haven't done before: Much is to be done but so far, I already saw Miss Regine and Sarah in person, traveled to different places, got to teach students in schools, treat my parents - brought  them to concerts and resto; spent midnight snacks and watched movies with my siblings; hang-out with friends; reunited with a long lost friend; restored a broken relationship, and tried to forgive someone;

(3) appreciate the fine details of life - More and more, my wishes become simpler. I realized there is more to life than any material thing could give, and that is getting enough oxygen and optimal healing to every organ in my body. Sobra kong na-appreciate ang buhay ko, especially the air I breathe, and the legs that carry me everywhere.

Eto lang sapat na 'to be happy'. Why did I fail to notice this before? And that's also what I want to ask you, when was the last time you were thankful for the air around you? True to what they say, the best things in life are free, but the problem is we're not contented with what we have and complicate rules to experiencing happiness: “I will be happy only if I’ll be able to upgrade my phone, buy a latest collection of chanel bag, wear a new pair of sketchers shoes..” And I'm so guilty of it because I once was a shoppaholic before that I forgot to remember how 'enough' I truly have.   

As I look back, hagulhol nako sa iyak - there were tears in my eyes, but they were no longer tears of pain but tears of gratitude - thinking how would I survive without the amazing people in my life.

I believe that God wants me to write this article so that I could speak for Him and claim that today, I can go out without any worries because I'm no longer ashamed of the scar life has left me with. It's a blessing in disguise; a sign that I conquered pain and fear. Wala na sigurong pagsubok na di ko kakayanin dahil kinaya ko na yung 'pinakamahirap' because truly, life is about not giving up and trying to fix yourself up after every fall. 

I cannot make the scar disappear but by looking at it, I see a testimony of survival, inner strength and God's miracles. Jesus never said it wouldn't be easy, but He said it would be worth it!  - Matt. 7:13

#secondlife #lifetestimony #embracingmyscar