#i am one month late to scoliosis awareness month

[sweetsncandies]

this man is not straight and neither is his back

[dawnthefluffyduck]

I drew this explanation post for why I was completely inactive for a week, but then felt too anxious and drained to post it, and subsequently disappeared for a second week

Two main blog drawings and one side blog wip later, I remembered I made this and still think it's funny, so even though I stopped being dead (TM) I still wanted to share lol

Brief series of events at work

^^^old, but I'm still taking it easy so posts on both this blog and my alt will continue to be scattered for now

[maykatha]

sentiments of a twenty something years old, (nakulam ver.)

TW: death & mentioning of abuse

two months late, but hello!

i have been doing this “tradition” since i was sixteen, and the fact that i still do it, despite the transitory nature of life and our inevitability of change, goes to show that I am consistent with this “craft.” however as i age and live this hiram na buhay na bigay ng Maykapal, i have come to realize that:

⭐️ we shouldn’t be pressured by numbers. (up for counter argument kasi ang privileged ng take, self-aware masyado, pasensya) kaya nga siguro hinahayaan ko na lang ‘yung sarili ko na magsulat at magbahagi ng more than or less than the lessons i’ve learned through my lived experiences at the age of twenty-three. gosh aNG TANDA BUT AT THE SAME TIME, ang bata. after all, life is measured by how we decided to live it.

⭐️ ‘wag magsesettle sa pangit na bus. but don’t let it determine the journey on the way home or to somewhere, nowhere even. you can still enjoy the ride, kahit na amoy yosi't epal talaga 'yung konduktor.

⭐️ ‘wag madaliin. actually, galing to sa lasing na kim eh. pero totoo naman. hindi naman talaga dapat minamadali. and ang hirap tanggapin ‘to bilang babae na may invisible kalendaryo’t orasan that conventionally dictate or determine our “worth," at oo, nakakainis lang din minsan dahil aminado akong, minsan, ay napapatigil ako't napapansin 'yung kung anong mata (na alam ko namang social constructs lang 'to) na nagmamanman sa kung nasaan na ba ako Bilang Babae sa lipunang 'to.

⭐️ pero, ‘wag puro huwag. tracing back to angelica’s weaved words through her letter, living our best lives is only one decision away. (pero again, open for counter arguments kasi nabubuhay tayo sa buhay na hindi lahat may choice, as it also equates to our privilege) literally, a simple "yes" or single step can lead you to where you really belong, to your becoming, to your dreams and prayers.

⭐️ sabi rin n’ya, don’t let other people (again) harden your soft heart! having your heart placed in your hand is one of the bravest things one can do. and in fact, i have it in my hand, minsan sa kaliwa, madalas sa kanan. at oo, wala sa sleeves ko. kasi after all, hindi naman lahat ng taong nakakasalubong ko ay may tapang na hawakan ‘yung mga kamay ko eh. :))

⭐️ forgiveness for the self is always the hardest. kaya sana, sana, mas bumawi ka sa sarili mo, Micah. mas mahalin at respetuhin mo pa 'yung sarili mo—'yung puso, utak, katawan, 'yung kabuoan mo. patawarin mo na 'yung bersyon mo na umoo sa mga bagay na hindi naman dapat. na hindi naman tapat.

⭐️ we can be healed in the most unexpected ways. as in. kaya sana, kapag dumating o dumadating, huwag sanang I-question. ah, now I remember what our college counselor has told me nung April during our off-campus internship, "hindi ba you prayed for it? bakit mo tinataboy?" bakit nga ba madalas tayong nawiwindang sa magagandang bagay na nangyayari. bakit ba't mas sanay tayong hawakan o yakapin 'yung mga tragedies...

hopefully, this time around, mas makita't mahagkan 'yung mga biyayang bigay. kasi hindi naman ibibigay 'yan sa'yo kung hindi naman talaga para sa'yo iyan, 'di ba?

⭐️ it's okay to feel like you're everywhere. as someone who technically 'moved out' at the age of 18, masasabi kong hindi ko na rin naman talaga alam kung may tahanang inuuwian pa ba ako. "hindi ba maganda nga 'yan," sabi ni Kim as I told her my sentiments regarding this.

sa Bicol naman kasi talaga ako pinanganak. hindi rin naman kami Bulakenya. sa Alabang, halos mahigit ten years pa lang 'yung bahay doon. sa P. Noval naman, doon ko unang naramdaman ang pag-iisa. tumira rin ako sa Boni, isang buwan. sa Padre Faura naman minahal ang pag-iisa. damn, ang dami ko nga kasi talagang inuuwian. and perhaps, baka lang, baka nga, ako naman talaga ang tahanan ko. parang pagong, laging dala ang buong sarili, laging naka-empake sa hulyen kong tote bag na nakaka-trigger ng scoliosis.

⭐️ life is short to not make people feel. ewan ko, pero siguro naging trigger na rin sa'kin 'yung recent death ni mx. c/j. naalala ko si Joy. si Ulap. si Kaylle. at iba pang mga wala na sa buhay ko.

and ever since then, as much as possible, I always try to make people feel how much I love or appreciate their existence in my life. kasi nga 'di ba, "your death doesn't happen to you, it happens to your family and friends" (I always wanna die sometimes, the 1975). kaya siguro, after all, panalangin kong hindi magsisi sa pagmamahal na mayroon ako na piniling ibahagi't ibinabahagi sa iba.

kaya sa'yo, sana napararamdam ko rin na importante ka sa buhay ko. at kung hindi ko man laging nasasabi 'yun, always remember that you're always embedded in my prayers.

(conversation with a friend 2 days ago ata, bwiset naiyak ako sa jeep)

⭐️ grief is nothing, but at the same time, it is everything. it is keeping your dead cat's expired medicine sa fridge, despite him not coming home anymore. it is dull and heavy. it is remembering. but at the same time, it is not remembering.

(an excerpt from a letter sent by moi a year ago via FutureMe)

⭐️ laughing is where we feel the most vulnerable. according to phoebe waller-bridge, "they expose their heart the moment they’re laughing, because they’re relaxed and they’re disarmed." and perhaps, let's say loving may go beyond peeling oranges and shelling pugo eggs. but, what if, loving is merely just the capability or capacity to just laugh with someone. ganoon kasimple.

(with the person who i can always end my sentence or sentiments laughing)

⭐️ you will be saved by the most unexpected people. in the most profound places. by the most serendipitous times. when I think of the times when people just miraculously show up during such DAYS or times when grief interferes on a random Tuesday morning, I can't help but be filled with gratefulness. i guess what I'm trying to point out or ponder on this is that you have no idea that such a simple action can or will serve as a bridge for one person to surpass something inside that resides in them. the world is already cruel (with the systematical oppressions that can be reflected in our day-to-day lives), so choose not to be.

(with the person who saved me and my graduation dress dilemma huhu)

⭐️ may mga taong deserve talaga ng isang malutong na f*ck you. kahit na deserve naman talaga nilang masapak (na fleabag style) or magripuhan dahil sa pananarantado sa buhay mo. pero dahil mabuti kang tao, mas pinili at pinilit ang sarili na mag-settle sa ganitong klaseng closure. after all, si God na nga pala ang nagsulat ng screenplay na 'to.

⭐️ para sa akin, yakap ang paghalik sa puso. (this realization made me research and read more about interpersonal synchronization, what the hell hahaha)

⭐️ our love languages may go beyond the conventional and socially constructed five (love) languages. may mga taong kaya kang ipagbalat ng orange or ponkan. nilagang pugo. ipagbalat ng hipon, or even i-debone 'yung bangus. either ways, nagmamahal tayo sa mga paraang alam natin, sa paraang kaya natin. sa paraang abot at tanaw. ika nga ni Prof. Richard Bolisay, love differs. grounded daw 'yun sa maraming socio-political aspects and contextualized sa estado ng isang tao.

pero question, 'di ba ang hirap mag-debone ng bangus? pwede bang ipag-daing na lang kita using ~bicol~ style?

⭐️ acknowledging your hurt or trauma can take time. and it's okay. growing up, akala ko si Zayn 'yung biggest heartbreak ko. and it took me several years na si Ate pala 'yun—ang biggest heartbreak ko.

on the other hand, it's also okay if you're only realizing an abuse (kung ano mang klase 'yan) only by now. kung kailan naka-usad o ikot na 'yung mundo. kung kailan tapos na, wala na. on the brighter, even brightest side, wala na. tapos na.

according to medifine skin clinic, an average skin cycle is 5-6 weeks. that's why I no longer wear the layers of me that you have once touched and ruined. time has passed. skin has regenerated. hence, i now wear the layers that were finally held tight and in the right way.

⭐️ kapag inantok ako kasama ka, please don't be offended. it's just that my body is comfortable enough to feel sleepy, hence, vulnerable and safe with you. (which is rare) kaya I'm blessed enough to say that the people in my life right now makes me sleepy. jk!

⭐️ the opposite of love is not hate. it's indifference. sabi sa'kin ni minty and kuya, both in different times. ang galing lang.

⭐️ "no matter what comes or goes, God stays." mula sa journal ko. galing ata kung naan, or sa isang Sunday service. pero gusto ko sanang dagdagan. since God shows up through His people, or He uses people to show His grace in goodness to us, I'd like to believe that such kind of people also stays :)

⭐️ "despite all our transgressions, we still desire to be loved. we still desire for human connection. no matter how cruel the world may be. so we beg forgiveness to those who may listen. some (people) would even go as far by punishing themselves just to attain the chance to repair the bridge they once broke. and through empathy, we see through their clenched fists the desperation to be wanted once more. no one is born to be evil; most are just born in unfortunate circumstances." (an excerpt from an essay answered by one of my students from my first-handled section) sabi nila, binabago raw ng Teachers 'yung students nila. pero gusto ko sanang dagdagan. kasi para sa akin, binabago rin ako ng students ko. i remember shedding a tear noong nabasa ko 'yan, sobrang akong na-touched. siguro dala na rin na may dinadala ako noong time na 'yun, na sumakto't sumapul sa kalamnan. pero totoo, hindi naman sa pagrarationalize or intellectualize ng actions sa 'tin ng other people, but, it's true. some of us are merely just born into such circumstances na hindi madaling kumawala because in the first place, hindi naman nila ginustong mapunta doon.

tsaka 'yung 'e' ata sa elisha ko ay: empathy. walang hiya.

⭐️ espasyo muna, babalikan ko 'to promise. medyo nakakalunod mag-munimuni sa mga natutuhan at pilit na matutunan netong nakaraang taon eh. (tama ba grammar ko ohmygosh)

⭐️ (cont. 17 july 2024) you create an impact more than you know. i often hear the quote, hurt people hurt people, and just the other day i saw this post of Ate Janna. story s’ya actually, sa minsanang kong paglulurk sa stories ng mga tao sa FaceBook, masaya ako dahil ito pa talaga ‘yung nakita ko. according to her sentiments, healed people heal people. and tracing back to my _th “lesson”, such a simple note nudged my entirety; kasi it’s true. because i once felt it. or saw it.

⭐️ (cont. 27 july 2024) try reading the same book, watching the same film twice. or even thrice. believe it or not, some things, or perhaps, even a lot of things are worth going back to. balikan, in a sense na hindi pinilit balikan. for instance, i have been re-reading Ang Tundo Man May Langit Din ni Andres Cristobal Cruz, and alongside savoring such, pansin kong mas nadagdagan ‘yung highlights at sulat. footnotes and sentiments na pilit inilalagay sa gilid. realizations that i have only met just now; parang taong matagal nang dinadaanan, or kilala, pero ngayon lang nakita nang malapitan. masinsinan. ganoon din ako sa pelikula. or TV series. promise, you’ll learn see more of it. and perhaps, see more life out of it :)

⭐️

palagi,

MICAH.

[ecotone99]

[SP] The Southern Illinois Council of Evil

The meetings only happened on dark and stormy nights, which was written strictly in the organizational by-laws. So, when a SICOE meeting was called for a Tuesday because the weather forecast expected heavy rainfall but had to be cancelled because it only ended up being a light drizzle, nobody complained.

Of course, on Friday, right at the start of the weekend, it started coming down like a catastrophe and everybody had to cancel their big plans to drive out in the middle of a God-damned hurricane. Things were understandably tense, but not half as tense as the time when Catman and Dogman had hatesex at the podium. Neither of them were ever invited back, by the way.

Supervillains stalked in to the meeting hall and shook off like a group of feral cats finding a cardboard box shelter. Everyone appeared in costume, some of them had written agendas for the meeting but some of them still had bandoliers of laser grenades strapped on them. To say it was a freakshow would have been an understatement. It was what a freakshow would go to see so that they could all point and say, “Hey, will you look at those miserable fucks?”

There were enough tables for all of them to sit at but that didn’t stop about half of them from standing in the back drinking coffee. The by-laws said that the Council would not recognize anyone that wasn’t sitting but that was rarely enforced unless there was a fracas going on. A few troublemakers liked to rabble-rouse every now and then but it was rarely a problem.

The Wine Tasting Fundraiser had been outstanding last quarter so the conference room had been extensively remodeled and modernized. It had projectors, smart-screens, surround sound and even the podium still had that rich mahogany smell. Crime did pay.

At fifteen til, the head table was already full. None of them wanted to risk losing their position to a greedy usurper looking at taking a spot in the food chain and the by-laws were pretty explicit in the fact that there was absolutely no tolerance for tardiness in executive positions. The President, the Vice President, the Treasurer, the Secretary and the newly formed Legal Advisor position were all present and squared away well before any assault on the hierarchy could occur. Not that it would, walking into this place and expecting the worst was the wrong mindset.

The Errorist, who signed all of his dues checks as T.Errorist with the O shaped as a little bomb, hurried in, nearly late, and sat down in his customary spot. The Errorist was the world’s only satire villain who exclusively exploded institutions of religion while leaving a list of all the logical fallacies he could think of associated with the religion of choice. Because of his sardonically hardline approach to religion The Errorist wasn’t exactly a popular member of the group. About half of the people at the meeting were Catholic but there were also some Lutherans and even one Mennonite. And despite never openly acknowledging it, The Racer Racist was actually Southern Baptist and his local chapter of the KKK actually met after the Sunday sermon. None of them liked The Errorist. Even in supervillain circles, religion and politics were touchy subjects.

So when The Errorist sat down in his usual spot where he and his two other friends usually sat he was dismayed to see that The Middler wasn’t in the chair adjacent to him. The Middler was a mediocre criminal that stole only a moderate amount of money in bank robberies and he always sat next to The Errorist as a part of their unofficial group-within-a-group. On the other side of The Middler’s chair sat down Doctor Rocktopus, the third member of the group.

Doctor Rocktopus was a man and an octopus and a doctor and a musician. Which all sounds confusing, but hold on, everything is about to be explained. Doc-Rock has a man’s body but his head is just a full octopus plopped down on his neck meat, proportionate to the size of his body. He uses his extra appendages to play his deadly instrument weapons like his Guntar which is a guitar-gun or his Drum-Missiles which is exactly what it sounds like as well. Doc-Rock also designed all of his own weapons with his knowledge of chemistry, engineering, and stellar indie beats. So he really isn’t as complicated as he sounds when you think about it for a minute. Just a regular old, musician/scientist/human/cephalopod.

Doctor Rocktopus looked over to The Errorist and gave him a mournful, knowing nod. The Middler must have been pinched by one of the do-gooders for something. They would probably have to break him out of the ol’pokey sometime this next week before concert season began. Doctor Rocktopus always dragged them to Phish concerts which had to be some sort of stereotype, somehow.

“Will everyone please stand for the pledge of allegiance?... Hah, I kid, I kid. Everyone knows America will be split up and auctioned off to the highest bidders whenever we enact global domination. I just wanted to start things off a little light hearted, you know?” SICOE President Baroque Rat cackled.

The Baroque Rat wasn’t just the President of SICOE, he was also the founder. He called the first meeting together nearly 23 years ago when it was just him and three other guys. He had a penchant for bureaucracy which seemed to be a lucky coincidence to his name. He was really a half-man/half-rat (rat from the waist up and man from the waist down) who chose to dress in frilly 17th century European fashions. He was literally just a Baroque Rat that happened to be a very apt Bureaucrat. The world was funny sometimes.

“Can I hear a motion to read the minutes from last meeting? Ehh… Motion made by The-Supervillain.com, Cyber evil a click away, and seconded by… Who is that? Oh, yes, Reflectorcist, the Mirror-based Demonologist, Jesus you all need to get some shorter titles. Ok, Secretary Tex Luthor, the floor is yours to read the minutes.”

Tex Luthor stood up from the head table and made his way to the podium, trying to put loosely held notes together into a stack. He wasn’t the worst Secretary the Council had ever had (Dyslexorcist, the illiterate demonologist, had been a literal nightmare) but his southern sensibilities did not seem to compliment the bureaucratic hierarchy. He usually had tons of folksy evil wisdom though.

“Ahem, yes, now,” Tex Luthor’s southern drawl twanged in even that brief moment, turning monosyllabic words into an orgy of sounds. Yes was turned into something that sounded like “Yeee-aaass” and the word now was mutated into “Neey-yooww”. Tex continued to nervously shuffle his notes, the poor guy had stage fright, it was only his second meeting reading the minutes. He hadn’t been a council chair member for very long and it was definitely starting to show.

“Last meeting, started with a motion to read the minutes of the previous meeting by Tinnitus-Titan, evil’s biggest little noise, and it was seconded by X-Ray-Cist, the radioactive demonologist… Boy, you, uh you guys and gals ever realized how many of these ‘exorcist’ people we got?”

“Move on, cabrón!” Shouted a voice in a distinctively Spanish accent. Mex Luthor. “Nobody asked you, filthy beaner!” Tex spat back.

The two, Tex Luthor and Mex Luthor, unrelated, had always been at odds against each other. Both had drawn inspiration from the legendary fictional supervillain Lex Luthor while also trying to pay homage to their respective ethnic heritages. They were both pretty stupid but damn, if they weren’t the most evil people you could ever meet. Tex Luthor robbed orphanages on two separate occasions and Mex Luthor built a dandruff machine that affected only Chron’s Disease victims. If only they could ever manage to get over their differences.

Tex Luthor restarted reading the minutes to sound of snickers coming from Mex’s table. Afterwards the sounds of papers rustled as everyone flipped over to the next page of the agenda. Groans filtered through softly as some of them realized what it was. A month ago, there had been a skeleton crew meeting. It had been the start of college football season and most of the big-timers had kids in school that were physically aggressive… So, yeah, most of them skipped the meeting. During that meeting a controversial motion was made and passed with a three-quarters vote. The motion: regular gender and cross cultural awareness training seminars.

Today was fifteen minutes from Lady Marksman’s “Feminine Heist Courtesies” and it was largely unpopular among the core villains. The class typically ran for four hours but Lady Marksman agreed to teach it as a series of small classes in exchange for a five year contract of refresher courses.

“I would like it noted in the minutes that I object to this whole fucking spectacle you bunch of homos are making!” Red Scoliosis shouted in his signature German accent. Red Scoliosis had a power that he called Scoliokinesis that he had developed as a Nazi Scientist back in World War 2, he was able to bend people’s backs with his mind. Also, he was literally the color of a red crayon. It was all deeply offensive, just like his grating personality.

The Errorist had once gone on a heist with Red Scoliosis that went completely off the rails. A superhero (Messiah Maniac: just another Jesus hero) knocked Red Scoliosis unconscious and when they were put into the squad car together The Errorist punched him right in the face while he was still out of it. The big red moron still didn’t know and even regularly mailed him Christmas cards.

“It has been noted, but if you speak out of turn again, I am going to go eleven herbs and spices all over your Nazi ass.” Colonel Planders replied in his Kentucky drawl. Colonel Planders was more than just a Kentucky Colonel/Mastermind, he was also the Vice President of the Council. He had the sharpest dastardly mind in the building. He leaned over to the Baroque Rat and whispered to him, “Ah’d been planning to say that for the last two hours.”

That was funny because the meeting started literally thirty minutes ago. Lady Marksman made her way up to the podium with a laptop bag and a fat pile of handouts which she slammed down on Red Scoliosis’ table.

“Pass those out, bitch.” She muttered and kept walking.

Red Scoliosis slid the whole pile off the table and they fluttered to the ground in a heap but it didn’t matter. He just lost a lot of reputation with the boys. He never had much of a reputation with the girls.

Lady Marksman made it up to the podium and smiled smartly, snidely, simply satisfied. Sorry, the comic book crowd loves alliteration.

“Good evening everyone. Some of you may know of me, I am the precision based supervillain Lady Marksman. Before you ask, I am completely unaffiliated with Marksman, another precision based supervillain. We both just had the same great idea for a name right around the same time.”

“Can’t you just change you name to Markswoman?” The Sexorcist shouted out from the crowd. Not many people liked to acknowledge Sexorcist, that guy was fucking gross. Gross demon sex stuff that makes hentai (Japanese animated porn for the uninitiated) look like Walt Disney. Every now and then he’d try to use his powers to rob a bank and it would go wrong in every conceivable way.

“No, that sounds stupid. Literally the most stupid name anybody could suggest.” Nobody liked to encourage the guy that regularly opened portals to another world for shadowy tendrils to reach out and seek the nearest orifices.

It was somewhere around Lady Marksman’s seventh minute speaking that Middler quietly sidled up into his normal chair. He flashed a grin over at The Errorist and gave Doc Rock a thumbs up. Doc Rock shrugged and went back to looking at his villain Twitter feed.

“What happened?” The Errorist mouthed quietly to his friend.

The Middler answered by lifting his hands up above the table. Around his wrists were handcuffs that had been severed at the middle joint.

“I had to escape!” He whispered back excitedly.

Lady Marksman wrapped up her introductory course with three rules about on the job bathrooms that all rhymed. She was applauded back to her seat with a vehemently moderate effort. It was underwhelmingly enthusiastic.

Tyrannosaurus Rexorcist, the SICOE Treasurer and dinosaur demonologist, got up to give a brief summary of the accounts as well as a rundown of the most recent expenditures. He was halfway through explaining the cost of aftermarket modifications being added to the espresso machine station when he abruptly paused.

“Aherm…. I just… Oh my God… Oh my fucking God! What are we all fucking doing? We are the bad guys? What is this? WHAT IS ALL THIS FUCKING SHIT?!? We should be out there right now killing heroes, kicking ass and ignoring names! We sho--!” T-Rexorcist was cut short by a swift karate chop to his throat by the Baroque Rat.

“Nothing to see here folks!” The Devil’s Advocate, half demon and all lawyer, said as Colonel Planders subdued the Tyrannosaurus Rexorcist with his wrist mounted net launcher. Devil’s Advocate, the Council’s Legal Council, gave a nervous chuckle as Tyrannosaurus Rexorcist was dragged from the stage. “Just another regular old existential villain crisis, I heard his wife is divorcing him.”

A motion to move on to new business was quickly raised by Trend-gineer, the fashion forward gadget-based villain. It was immediately seconded by The Errorist. Nobody wanted to think that any of them could have a mental break like that at any time. If they all collectively ignored it hard enough then maybe it would stop happening. “The motion to continue on to new business passes.” The Baroque Rat said as he wiped his brow and sat back at his seat again.

Thanks for reading my story! I have probably never had more fun while writing than when I wrote this. So it might not be any good but I guess it is ok because I had a blast coming up with all of this. Feel free to tell me what you thought! I always welcome constructive criticism!

submitted by /u/Cursed_Apricot [link] [comments] via Blogger https://ift.tt/2K5V7SY

[digitaldesignspec]

Third Day - Case Study - Coleen

Coleen was 14 when she was diagnosed with osteosarcoma (bone cancer). It was after 8 months of losing weight, tiredness, severe leg pain and an emergency admission to hospital she was finally diagnosed. She went through gruelling and aggressive chemotherapy and extensive leg surgery for 1 year before she began her survivorship. The chemotherapy caused severe side effects months and years later, and although she is now many years into her survivorship, she is effected by many long-term conditions resulting from her chemotherapy. These include damage to her heart, digestive tract, hearing, nerve pain, scoliosis, kidney and many other pain conditions, these physical conditions also cause emotional and psychological issues.

Coleen wants to be an ambassador for Kidscan, to help raise awareness and funds to help with the discovery of new, kinder chemotherapies. If treatments are less toxic and made affordably and more readily available, more children will survive and THRIVE, with less long term conditions and better quality of life.

Coleen’s Blog Post

Who I Am and My Experience By Coleen Quinn

My world was amazing, I was a skater and enjoyed extreme sports, water skiing, and rollerblading. When I wasn't in school, or in Manchester on urbis/Piccadilly gardens mingling with people like me, the world was my oyster, I was the happiest girl alive.

I had always had 'growing' pains in my knees and migraines but other than that I was healthy. I'd began practice for a school production, and was taking choir as well so I was very busy, as well as drama out of school, singing lessons and playing the flute in a band. My family always nurtured my talents and would give me what they could.

I don't really remember how it happened or when exactly, but after a skating injury my Right leg was sore and didn't seem to get any better. I noticed a swelling but didn't think much of it.

As the days went by I began to be less and less able to use my leg, it was hot all the time and I had restricted movement. I was getting tired, although my life's routine hadn't changed. Why was I not coping, something didn't feel right, I've never been ill so it wasn't even a thought. Days turned to weeks, weeks turned to months. After a while I had given all my extra curricular activities up through feeling tired, and had school phoning home because I was unable to stay awake in lessons (In fact I think I slept in every class). I felt like I was in a bubble life rushing past me as I started to slow.

By this time my Mum and Grandma started to get very worried. I was having to skip PE (with a sick note although the teacher called me a liar and lazy), and couldn't even do my part in the school production as I couldn't bend down on my knee. I was dragged to the doctors several times and was told it was either; Too much/too little exercise, drugs, drink, growing pains. I had a doctor push me down by my shoulders into a crouched position, forcing a scream of agony out of me.

By this time we were all getting worried I had lost loads of weight and was having night fevers ( Not The BEEGEE’s type). One day my Dad had an appointment with a Dr and told me to go instead. I couldn't believe it for the first time someone listened, and I was sent for an x-ray and bloods. After the tests, my life carried on for a couple of days, but I really started to spiral downwards, I had to get painkillers (tramadol) which as I recall just made me high. I made friends with a beautiful nurse with brown long hair and soft face (a hallucination) who I swear I believed was real.

Then tomorrows mystery became history with one phone call, to tell us I had shadows on my X-ray and I need to see the consultant the following Monday.

This was the day our lives took a different course and changed forever. From that day Today really was a gift!!!!

I endured a strict and aggressive chemo regimen which made my hair fall out pretty much instantly, as well as weak and ill. This only got worse, I could do nothing for myself, I couldn’t eat, drink, go to the toilet alone or wash alone. I used to shower sat down, the when I got out my mum had hot towels and I would collapse asleep on the floor. I had to have 3 cycles before my big surgery. Then in August 2003 I was taken to Birmingham Royal Orthopaedic hospital.

My surgery was described as limb salvage and when it was explained to me I was told they might not be able to save the leg. I had to consent to and operation that I could end up an amputee from. That was one of the scariest times of my life, I may wake up with no leg. But I guess life is more important than a leg????

After 8 hours I woke up to my Mum saying wiggle your toes. MY TOES! My leg was saved! And better still I was lovely and warm under a blanket that was heated by what can only be described as a hair dryer. I made it and my whole family were there as well.

From here on out I had to continue with the dreaded chemo to blast any fly away cells from causing anymore trouble. However I had to complete treatment early due to a mini stroke, which was scary to say the least. But there is no lasting damage from it.

I guess what I take away from my experience as an advocate and ambassador is that the chemotherapy given to children is so so toxic, in fact most chemotherapy regimens are meant for adults and adjusted slightly. There is no excuse for this, however Kidscan are the only charity that are dedicated to designing gentler therapies for children, and therapies that targer CANCER cells and not healthy cells to. It’s the damage done to the healthy cells that is the problem.

I have many late effects including:

* Tachycardia

* Arthritis

* Nerve damage

* Severe pain

* Fatigue

* Weakness

* Cognitive impairments

* Psychological and emotional difficulties

* Bowel problems

* Breathlessness

* Sight problems

* Tinnitus and reduced hearing

* B12 deficiency

The only plausible way to decrease late effects and increase QUALITY OF LIFE and ensure survivors are THRIVING new treatments are needed…and Kidscan with support from donors are the ones who can achieve this goal.

[katkathleentinay-blog]

Since I am kind of bored right now, let me just share to you what has been going on in my mind lately. I made this blog to express my feelings out baka sumabog ako pag hindi ko nailabas e. But that doesn’t mean that I don’t have someone to talk to about my kaemehan in life, it’s just that I’m not really into sharing my problems to people. I don’t want to bother them anyway. Hihi

You(reading this) may know me personally, have met me once, saw me from afar or I might be a stranger to you tapos nagawi ka lang sa account ko. Lolz. You guys prolly know that I am not physically normal. I have scoliosis. Scoliosis is the curvature of the spine. I have this since I was born. (If you have scoliosis and you really wanted your spine to straighten you have to undergo for a surgery, IF your case isn’t severe yet. I mean yes you can wear brace to prevent the scoliosis curve from progressing but it doesn’t really straighten your spine one hundred percent.) I am not gonna go into details anymore. I wasn’t aware about scoliosis until I reached 18. I never did some research about it when I was younger. I have learned so much that I wished I knew about it earlier when my case isn’t severe yet nasa huli pa rin talaga ang pagsisisi never talaga sya nauna. That’s when I found out that severe curvature of the spine might compress your heart and lungs. That made me worry cause I know in my situation I have severe case as well. Months ago, I had trouble breathing. It was very unusual. I had myself checked. I had xray. I was actually thinking that time that I dont wanna see the xray result for I might be depressed even more but I got curious so I still did. I went to Philippine General Hospital cause I badly need to get checked by specialists of the spine. I had several laboratory tests. Hindi ko nalang ilalagay dito kung gaano kahirap yung araw araw na pagpunta. We exerted too much time and effort annnnd of course money. Hindi naman porket charity eh hindi ka pa rin gagastos. Maglalabas ka pa rin talaga ng pera pero kahit papano nakakatipid. Most of the doctors told me that I should’ve done my check up when I was younger which means in my case it’s too late already. Matigas na daw kasi yung buto. I could even see the doctors facial expression everytime they check my laboratory tests. Hay kahit naman ako mapapailing ako e. But what can I do? 🙁 We’ve been going there for months already magiging doctor na ko kakabalik ko doon. Lol

Last week I went back to ortho for update. And then the one who checked me up wasn’t the doctor who handled me last time. She explained me everything, what are the possibilities and how risky it is if I undergo for a surgery. I might not be able to walk again. Though they’re not hundred percent sure but the risk in my case is quite high. Parang hindi ko matanggap sa isip ko pa lang na hindi ako makakalakad if ever. Ang sakit isipin. And if I undergo for a surgery my heart and lungs should be stable because I might lose my life if somethings wrong with those two. Hays when reality hits me.

And that she said that they might not do the surgery for me. Parang hindi ko magawang ipasok sa utak ko yung mga sinasabi ng doctor saken. I was feeling dazed while I was getting outside of the room. Too much why’s in my head. What if’s thought came in. I.just.dont.know.anymore. What if I won’t be able to walk again. What if.. What if... What if... Mamamatay na ba ko? Yes, ganon ako kalala mag overthink.. Hindi mo rin talaga maiiwasan makaisip ng mga ganon eh.

Should I take the risk? What would happen if I won’t? Lord tabang! Hindi ko alam kung ano pipiliin ko, kung san ako mas mapapabuti. Ano ba ang dapat gawin. Is it really too late for me? Wala na po bang ibang paraan?

There were times that I find myself crying. Ang dami ko pang gustong gawin. Sobra. Nakakaiyak. I talk to God every night. Asking for his guidance. I honestly prayed that I hope he would still give me the chance to live, to reach my dreams, go to my dream destination and still be with people I love. Tsaka hindi ko pa nga nahahanap yung forever ko eh. Lolz. But despite of everything I’m still trying to be positive I have to, blessed enough that my parents may not be with my side but I still have people with me that truly loves and cares for me. 😊

Proverbs 3:5-6

[dollforlife]

I’m the type of gal who loves a challenge. I never take anything at face value and I always look beyond the obvious to see what I could possibly change about a situation or what I may have missed. Having said that my weight and fitness goals haven’t yielded me the best results I desire even though I consider myself a fairly healthy eater (low carbs, healthy fats, and mostly organic) and a moderate exerciser (I bought a Peloton three months ago) that I use frequently. Still, I haven’t seen quite the transformation I had hoped for.

What I had hoped for was a stunning change that would knock my socks off! Now I’m not saying that buying this fabulous piece of equipment was a total fail; what I am saying is that I think the results come a little slower from using it unless you’re putting in an extreme cardiovascular effort. It’s much more trying on you physically than cycling mostly because unlike Pilates you can really only count on your lower body the entire time. Pilates Plus or the Lagree method founded by Sebastian Lagree combines strength and flexibility in movements performed slowly to engage the slow-twitch muscles but overlaps the exercises right behind one another with no rests so you still reap the benefits and intensity of cardio. The workout is performed on a re-vamped version of the original Reformer machine designed by Joseph Pilates that Lagree perfected called the Megaformer. In all, there are six models each with slightly different modifications and upgrades.

My first step was to research, up until this point all I knew was what I had seen on the various episodes of “Keeping up with the Kardashians” and the famed Pilates Plus studio they frequented in Studio City. Well since I live in the South Bay which is a cool 20 miles south of there I had to be a little more creative; my next alternative was either Rancho Palos Verdes or Long Beach. And to be fair the Lagree Method is only taught on the Megaformer machine; if you find a class taught on the Reformer it’s not Pilates Plus. So this made my search even more restrictive. Not only was I looking for something close but I had to find something specific to my needs and it had to offer a high energy yet welcoming atmosphere. Would I find that?  Read on and find out.

I started with Groupon because, why not? It’s the perfect place to get a sampling of what’s out there without a long time commitment. After all, who wants to be stuck in a contract or pay for a month or two of classes only to find that the classes suck or the teachers aren’t motivating or any other number of disappointing factors that could potentially present themselves? I know I didn’t and neither did my Amex. So it came down to this really cool downtown Long Beach studio called KP Pilates Plus, it is still within the Pilates Plus franchise but the owner Kelli Parsley added her initials for a little flair. The good thing was it was located less than 10 miles away; literally, a hop, skip and a jump from the Vincent Thomas Bridge (so is my house) and boasts vast meter parking or two-hour lot parking. But first I had to get set up with my Groupon. After my initial purchase, I didn’t realize that I couldn’t proceed straight to “GO”. No ma’am do not pass “GO” do not collect $200″. I tried to redeem my coupon only to be emailed by the owner (very politely I might add) that I needed to set up my credit card (in case of canceling a class so they can bill you). Although my classes are pre-paid it is standard practice in the event that you need to purchase future class packages, single classes, and merchandise in the studio and so on. I then had to send her my Groupon redemption code that she would insert and activate my trial, although the clock doesn’t really start ticking until you book your first class. My coupon in and of itself would have however expired within (60) sixty days if I hadn’t used it at all. *Different deals have different restrictions.

Once I had all of the particulars out of the way it was time to brave the wild, take a chance, be bold, embrace my inner fighting spirit…..okay you get the picture! Two days later…I booked my first class! I wasn’t sure I had the right workout gear but everything I knew to be acceptable seemed about right, leggings and a fitted tank and flip flops. And every class requires Toe-sox or some kind of fitted grippy socks so that you don’t slip and fall. Most of the moves will require you to move your feet across the carriage which is the center part of the machine. Even holding on the curved bars you could lose your balance. Trust me you don’t want to try Teaser, Catfish or Elevator Lunges without them.

      My first class was a late evening one that I was actually late for due to construction and my unfortunate driving mishap. And by that I mean that I accidentally took the wrong exit (yes, Maps you’re not the best at direction giving) onto a highway instead of a side street. But I recovered and made it a few minutes into the session, got my socks on and quickly started off with the Wheel Barrow. The next time I vowed to come at least 15 minutes early just to get my bearings, re-familiarize myself with the equipment and to discuss my limitations and fitness goals (i.e what you expect to achieve from the class) with the instructor. I have scoliosis (a curvature of the spine) and I have had four abdominal surgeries including C-sections. It’s important that your instructor be aware of any injuries (recent or otherwise) or limitations so that they can show you modifications until you’re ready to do the full movements, eventually, you will. I was happy to take this particular class called Form and Technique as it was specifically geared to teach better form and alignment. It’s a great class for beginners and an awesome Segway to get me acquainted with the practice.

  On the Megaformer, getting into plank position. At home with none other than a smooth glass of pinot, sweat-shirt $56 by Private Party shop Carbon 38.  

When that next time arrived I came in early at 8 am, well that was early enough for me. They have classes that start as early as 5 am…no thank you. My next class was standard Pilates Plus which was an awesome one. This time the moves were more familiar and I remembered where to position the springs and how to move the front But don’t be misled that doesn’t mean it was easy in any shape or form. But because I had grown accustomed to sitting in one position, working mainly my lower half of my body, boy was I in for a surprise! We worked every muscle in my body, I felt like I had awakened parts of my physique I hadn’t even known existed and yet they were such slow and concentrated moves; in fact in Pilates slow and steady wins the race. And how else do you know if you’re doing it right? When your muscles start to shake, that’s when. My legs were a-quiverin’ like crazy! That implies muscle failure and the inherent breakdown of muscle fibers that will eventually rebuild stronger and leaner. That’s what we came for people. That’s why we show up! Now I’m not going to sit here and say that I performed every move with perfect form or held every count for as long as my instructor, Jean asked of me, but that first day I DID give it everything I had! And it has given me something in return, my posture has improved I seem to sit up straighter, I walk taller and my abs, yes my abs are starting to feel tighter and more compact and my arms and thighs are definitely getting much more definition. And I kept going back for a total of seven classes which I think equated to one class every other day or every two days. I tried to fit them in when I could. The important thing is that I feel good about myself; I’m imparting a positive sense of accomplishment to my psyche. That does wonders in and of itself.This week I’m devoting myself to a one-month unlimited package which is a huge (financial) and personal commitment. But I’ll tell you something, when my trial ended just yesterday I felt like something was missing. I seriously felt this gut wrenching emptiness; I have gotten know a few of those gals and I like their “little shop of torture”, I say it with the utmost respect. Could this be love? We’ll see.

What chances have you taken lately? What new adventures have you opened yourself up for?

Wishing you Love and Luxury,

Linda

I Took a Pilates Plus Class for two weeks and Here’s What Happened I'm the type of gal who loves a challenge. I never take anything at face value and I always look beyond the obvious to see what I could possibly change about a situation or what I may have missed.

[haribopooj]

How are things now....

Ooh it's been a while, a while since I have written anything in this blog. The main reason for that is that Phoebe is doing well. I was just saying to someone the other day that I have just about got my Phoebe back. She has been off steroids since November. It's only since she has come off them that I realized how much they affected her. Her weight, her hair, her moods, her concentration. Since she finished them I have seen her slowly but surely start to become the Phoebe she was before. This is lovely to see. She is still on a drug called Methotrexate. This is a low dose chemotherapy drug that we have to inject once a week and she is also on a biological drug called Ilaris once a month. This is the super expensive one that has to be administered in the hospital. Even though she is well we are both very aware that things can change at the drop of a hat. An infection or bug could trigger her symptoms or in some cases the medication can simply stop working. We are hopeful tho that she will stay as she is for a long time. She does suffer pain intermittently. She has developed her own way of coping. She will find a different chair to sit in or a different position. She uses cushions or towels or blankets. She doesn't like asking for nurofen or pain killers unless it's really bad. I can usually tell if she's sore but I let her decide how she's going to manage it. Recently her back has been giving her grief quite a bit so in one of our regular trips to the Dr we mentioned it as it was becoming an issue at school for her. The Dr recommended x-rays. The X-rays showed up scoliosis of the spine. This comes at many different levels and luckily phoebes doesn't seem too serious and can hopefully be managed with physiotherapy and not an operation as some more serious cases need. Apparently this is not related to her JIA. Just another little bump in the road for my girl to get over. Speaking of dr's I have just been sitting here working out the next month of appointments for her. It does take a lot of trips to the Dr to manage her. She never moans. In the next month we will we visit the hospital probably 5 or 6 times for different tests, medication or to see a Dr. She is not a big fan of most of it but she gets it and carries on with a brace face. She has done remarkably well. She missed a lot of school last year. This school year started rocky for her and to be blunt we were worried. She had gaps in her education and we considered moving her year group or dropping her back next year. It was a worry and she has had enough disruption and we wanted to make it minimal. Since Christmas she has bloomed. She has tried so hard and some of the gaps that were worrying is have been filled in. Only today she has come to me and read a large chunk of a book she couldn't have done 2 months ago. There are still some gaps but I am feeling so much more confident now that by the time year 3 comes around in September she will be great. A couple of people have said to me recently 'how is Phoebe doing, I notice you haven't done your blog lately' The main reason is that she is doing well. It was kind of a let off for me to write the blog. To let everything out and to try and make sense of it all. I feel I am coping with it all so much better now and we as a family have got our heads around it. I won't lie, it took me a while and it has changed me as a person. I feel I am stronger than I used to be, maybe sometimes more cynical or less trusting than I used to be in some ways but I can work on that. My priority is Phoebe, Antony and Harry. We have come so far and we don't intend to stop. X