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trashcandroid · 1 year ago

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another october 13, another year on T (3 total now!). but this one’s special since it’s a super spooky FRIDAY october 13. more random stuff about it under the cut

part of the reason i chose october 13 to start T is because it was soon after i got my prescription, it would be a tuesday (thought it would be funny to have T days be on Tuesdays) , and because at some point it would be a super spoopy friday october 13. i looked up when it would be a friday and saw it would be in THREE WHOLE YEARS. i would have graduated college by then! and then… who knows what i would be doing??

turns out i’m doing even more school for the next probably five or six years. it’s refreshing to only be around people who really just see you as A Guy. i don’t think they even suspect i’m trans (or most of them anyway) since i’ve had quite a few conversations where they definitely would have asked if they thought so. a few of them i remember off the top of my head:

someone was asking if people had partners and i said yes (…i mean, i sorta do, don’t really wanna get into it here lol). she asked me if they were a boy or a girl and i said neither. she then kept trying to find out what they were really and seemed to be a little disappointed when i wouldn’t tell her. (to be fair, she was pretty drunk and actually passed out later that night… but that also means she totally would have asked me if i was trans if she thought so)

this same person also asked me earlier if i was bi (for some reason she was asking everyone that), then when i said no she asked if i was straight (no) or gay (no). this led to me telling another guy that i was ace and aro, and he asked a bunch of weird questions about it lol (i gave him permission to since i was wondering what questions you would even have about that, seems straight forward to me??). but no questions about being trans

oh yeah, this same guy showed my openly trans friend who was visiting some trans memes he had saved (his gf is trans). but he didn’t show them to me 🤨

ok one last one. another guy was talking about how he was thinking about joining an lgbt group here, but had felt kind of left out and different at the one he went to before. i said i felt the same (true). he got happy that i could relate and said, in a relatable tone, “yeah, they’re mostly trans and non-binary people there so i didn’t really fit in!” i hope i didn’t mislead him into thinking i was gay lol

i also joined an ace aro group which has been pretty chill. at least half the people there are non-binary and i have no idea if they think i’m trans or not. i’m guessing no..? or they’re being decent and not just asking

i never thought i’d be stealth but it’s actually so nice being around people who don’t give your gender a second thought. i did experience that in my band and in my last two years of college (well, stuff happened at the end of my third year that made me freak out for all of my senior year… which you can read about in the previous one of these lol) but the anxiety that everyone is just being nice has always been in the back of my mind. but all these small interactions seem to indicate that these people just genuinely think i’m a regular guy

ANYWAY. IN OTHER NEWS. since i have student insurance that covers 100% of the cost of medical transition stuff, i decided i could finally pursue top surgery! i already have the consult scheduled for early next year, and if the timeline is similar to what they said on the phone, i could have it done by the end of next semester! possibly even before my birthday? but depending on the available dates i might postpone til after finals. (on the plus side, those should really be the final finals i’ll ever have to take.)

i also got my passport updated with the correct name and gender marker. now i just need to update my birth certificate and that’ll be everything

despite lots of other shitty things going on in my life right now, i actually feel really positive about where things are going in terms of my transition. i can look at my face in the mirror and just see me. i can be around people who just see me. i don’t have to be around family members who mess up pronouns or awkwardly stumble around sentences to avoid using pronouns for me at all. i can just exist.

#mine #fr though every time i get upset about my chest i can remind myself it’ll be gone in half a year #i’ve kinda been binding a dangerous amount for the past few... years i guess at this point… BUT SOON…..

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callioope · 4 years ago

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I’ve been vague about what has been going on in my life intentionally, both because I needed to tell some people offline first and because it’s a lot to process.

But here is what happened: I am in the process of miscarrying.

I thought it might help to share my story. Miscarriage is more common than people realize and rarely talked about. If someone can benefit from my story, all the better, but mostly this is to help my grieving and coping process.

This is pretty detailed, so trigger warnings and all that.

Exactly one month ago, I read the results I had longed for: pregnant.

Today, I’m sprawled out on the couch in the most excruciating pain I’ve ever experienced.

They don’t tell you that miscarriage is a process.

We’ve been trying to conceive since the end of last June. It was taking so long, I was convinced I’d be scheduling a fertility consultation this coming June. They tell you if you’re under 35, to give it a year. Before we started trying to conceive, I’d tell anyone about how time speeds up the older you get. It makes sense logically, of course, when a year is 1/5 of your life, it sure seems long, but went its 1/32, well...

But this has been the longest eleven months of my life. The first month we started trying, I had an unusually long cycle. 39 days. I was so sure I was pregnant. My breasts had been hurting for two weeks. Husband and I were vacationing in Minnesota to see Aston Villa play. I bought a pregnancy test, beaming, excited, and was puzzled by the negative result. A week later, when my period came, I cried to my mother, and she said something about the universe saying I wasn’t ready or something. Whatever it was sounded bleak and ominous to my ears. It sounded like it meant I’d never be ready.

The fall was busy and stressful, and despite all the tedious ovulation test strips, nothing happened except somehow, my period got lighter month by month. I was pretty sure something was wrong with me. I thought I had a UTI. (I was actually stressed and dehydrated, which I eventually remedied.) While I cried at a Sara Bareilles concert in November, my mother told me that her OBGYN said it can take as much at 9 months for the body to recalibrate after being on the pill.

Speaking of which. I’ve been taking the pill for over a decade. For the most part, I took it correctly. There is some leeway to taking it incorrectly, for the record. You can miss two pills in a row and it still has instructions for what to do (while cautioning to be safe and use extra protection). Maybe only once did I ever have to throw out a pack for missing too many in a row.

(This is maybe neither here nor there, but rebelcaptain accidental pregnancy fics have become a bit of a pet peeve for me. Jyn and Cassian are far too careful and intentional to let that happen, and it is so easy to be responsible since there are so many birth control alternatives these days that don’t even require reliance on routine or memory.)

So, of course, the concern lately is that clearly 10+ years on birth control has messed me up. I do not know this objectively (what I do know is that I have OCD and anxiety and obsess over Everything That Can Go Wrong), but the point is that birth control really can have consequences that I don’t think are necessarily fully understood or studied. DO NOT GET ME WRONG, USE BIRTH CONTROL. My only regret is what I didn’t know.

I learned too late, but a lot of conception advice articles tell you to quit the BC as soon as possible. Even if my mom’s OBGYN is wrong, the general advice does seem to be that it can take up to 3 months for your body to recalibrate. So, if by any chance someone reading this is thinking about conceiving soon, if you take nothing else away from this rant, take this. I wish I had stopped taking the pill a few months before we actually intended to start trying.

After ten months of all this worrying, I finally got what I’d longed for. The moment I saw that positive result, it felt so surreal. There had been little things leading up to that moment, strange hints and signs, like I knew subconsciously even before a test would have been positive. I wrote that Howl’s Moving Castle pregnancy fic before I knew. I started learning “Here Comes the Sun” on my ukulele before I knew (it’s... silly, but I decided I wanted to learn the ukulele because I wanted to be able to play that song for my kids some day). It involves finger picking, so I’d been putting off learning it, but one day I just decided it was time. And finally, I decided to watch the latest season of Brooklyn 99. I’d avoided it because I knew Amy & Jake were also trying to conceive, and it was too emotional for me to watch that when I was so frustrated for how long I was taking. (Of course I didn’t realize they also had trouble, and watching it actually felt cathartic for me.) I got that positive result literally the next morning.

I spent Monday, April 20, making checklists and spreadsheets. I set my first prenatal appointment for May 8. Those two and a half weeks were the slowest of my life. They stretched out like a rubber band. I couldn’t really focus on anything except this pregnancy I’d waited so long for. That’s probably why time moved so slowly. I wasn’t filling it with the hobbies I enjoyed, writing and playing my ukulele. All my overwhelmed brain could handle was the hilarious distraction of Community. Yeah, this is also around the time I disappeared from fandom. It was originally for a happy reason, I was just too excited to focus!

I know many women who have miscarried. The data seems to vary from source to source, but anywhere between 10% to 20% of pregnancies end in miscarriage. I couldn’t wait to get to the doctor to confirm everything was okay. I wondered if they would do an ultrasound; I dreamed of seeing a fetus on that screen.

We started talking about how we were going to tell our family. We wrote a pretend promotion letter for my sister, promoting her from “sister” to “aunt” (she’s a badass at her job and we had recently been talking about her promotions so it was thematically relevant). We planned to do a video call with my parents where we played Quiplash and created custom answers related to the pregnancy.

But we never got that chance. On May 8, I went in for my first appointment. I’d spent the last three days sewing a mask because the ones we ordered still haven’t arrived yet. So all the time I would have spent preparing myself for the worst (as is my way) was spent instead distracted by sewing and finishing up Community.

They took me to an office first and went over medical history questions. “Any morning sickness?” the nurse asked. “Not at all,” I said. “Should I be worried?” “No,” she answered. “Consider yourself lucky!”

(For the record, many women who carry to term do not ever get morning sickness.)

(It was just one of those unfortunate exchanges.)

Then the exam with the doctor. All in all, it’d probably been 30 or 40 minutes by this point, all of this excited talk. I was going to tell my parents on Mother’s Day. My due date was Christmas.

I video call my husband just in time for the ultrasound.

There was no embryo.

The doctor said a lot of women are ovulating later in their cycles due to the stress of the pandemic. At the time, I thought maybe. Hope is funny like that, in the face of logic. It started to grow like a weed in the cracks of my breaking heart.

But the thing is, even with that stubborn hopeweed, I knew. I’d been doing this for ten months. I knew when my last period was, I knew when I ovulated. I was 7 weeks and 1 day, and there was no embryo, and that was it.

The beginning of the process of miscarriage.

Technically, it’d started a few days before that appointment, but I was distracted at that time. I’d noticed one morning that there seemed to be more hair in the shower floor than there should be.

Dots started to connect. My breasts had stopped aching. Now, they started to shrink back to their original size.

This happened over several days. I felt certain I would miscarry on Mother’s Day; fortunately, that did not happen. No, enough days had to pass for that hopeweed to prosper. Only then, when it whispered maybe would I start spotting and cramping.

On Tuesday, the second ultrasound confirmed what I already knew. Not viable. Missed miscarriage. Technically, the prescription the doctor hands me reads “missed abortion.” “It’s just the technical term,” the doctor explains, acknowledging that many women might find this triggering.

I don’t cry as much as I did. I only cry when I tell people. It seems important for people to know, just in case. Just one person in the relevant circles of my life. I had to tell my boss to explain the sudden uptick in unexpected doctor appointments. (I’m Rh negative, so I needed to go to the hospital to get bloodwork and a Rhogam shot -- and being in a hospital these days in anxiety-inducing enough without this trauma.)

It still feels surreal. All of this happened in one month. Somehow my life has changed completely and then reverted back. This is just a blip in my life, relatively, and yet it seems the longest month of my life.

In movies, in stories, miscarriage seems to go the same way: a flash of bloody sheets, a shout of shock and pain, and then grief. I never knew how it really goes: that it would stretch out for weeks, from the moment I saw that first ultrasound to now, twelve days later, just starting to bleed. I’ll have to go back for another ultrasound to confirm it’s done, and if it’s not, then I’ll need surgery.

This speaks nothing of the grief.

And then it’s back to square one, a whole year later: ovulation tests and endless waiting.

It’s been a whole month; it’s been only a month, and miscarriage is a process.

#tw: pregnancy #tw: miscarriage #the latest with liz #this is detailed and specific #not for everyone #it's part of my grieving process #it's been a month and i thought it might help to say something

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laceandhockeyskates · 6 years ago

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What the hell I’ve been up to?!

I don’t even know how to make an introduction for this hot mess but I guess we’ll go month to month more or less because let me tell you 2018.... really fucked me up. Both in good ways, but also in terrible ways? I don’t know... I feel like it’s all worked out in the end but damn was it a mess to get to this point.

January- lovely, lovely January. Aka the last time I’ve posted anything of real value on this blog. I had my first trip out of the country!! Other than that uneventful?!

February and March (since nothing happened)- I turned 25. I don’t remember anything besides grabbing lunch with my grandma for it... so clearly it was a huge deal. Besides that though.... nothing.

April.... this is when things got.... interesting- we found out in April that the retail company I worked for was going out of business. Which was absolutely terrifying. I had no idea what I was going to do, how long it was going to take to find a new job... I knew nothing. That very day that we were told I put in 25 job applications. Within a week I had 4 job interviews lined up for one day that I had off of work, and at the end of that day I had a new job.

May- and it gets worse. May 4th was my last day at the store before I started my new job on May 5th. It was somewhere that I had applied to several times and never got a call back from, and it was only a three minute drive from my house so I thought everything was going to work out. Right? Wrong. I HATED it. With every fiber of my being it was the worst. I sat in my car on my lunch breaks crying more often than I wasn’t. It was honestly awful, and some greater power that be must have recognized how miserable I was because I was only there for less than 2 weeks. I started on the 5th and I worked my last day there on the 17th. I was scheduled to have that Friday, Saturday, and Sunday off already which I was thankful for and had all these plans. So since about November-December I had these back pains that started right between my shoulder blades and wrapped around my stomach every few weeks. At first I thought I had a strange strand of the flu, and then I thought I was just sleeping on my back wrong.... well neither was accurate. That Friday night I was sitting on the couch watching tv when the pain hit me again and at that point it was more of an annoyance thing because like seriously?? So I just did what I always did and took pain meds and prepared myself for a night of no sleep and taking a hot bath every two hours to pour steaming hot water over my back (aka the only thing that really helped), by Saturday I wasn’t any better and my dad offered to take me to the ER. I thought he was just tired of listening to me whine about the pain and not really worried but I did let him drive me to Walmart to get a heating pad and more pain killers. Which again... helped.... but only for so long. I actually got to sleep that night and woke up at 3 am in literally the worst pain of my entire life. I quickly got in the tub hoping that the hot water would work or the heating pad or really anything. By 5 am though I knew that something was terribly, terribly wrong and that’s when I asked my dad to take me to the ER. Which I don’t think he took me seriously until 7 when my mom woke up and I asked her to go. It took less than 5 minutes at the ER to be told I have pancreatitis and gallstones and I’m basically screwed. By the time I came back from chest x rays I was being admitted. And let me tell you... that shit sucked. My Er nurse asked me how I was feeling and I literally laughed and told her I was just happy that it wasn’t all in my head. Which she very much assured me that it wasn’t. And that I actually have a high pain tolerance considering anyone else would be screaming in pain, and that if I had waited another few days I’d be going in with a raptured gallbladder. That first day... sucked to put it kindly. Because I had a gallstone blocking my pancreas I wasn’t allowed food (I ended up going from 5 pm Saturday to 2 pm Monday without food) or water (4 am Sunday to 2 pm Monday). Do you know it’s like to go that long? I was the biggest asshole because all I truly wanted was applesauce and water. To top it off though they couldn’t figure out a pain med that actually worked for me. Morphine lasted about as long as it took to get to my toes (a few seconds at best) so I was miserably in pain the entire time. Monday wasn’t too bad. My mom came and visited me, and for the most part I was left alone with the occasional check in minus my surgery consult. Tuesday.... was a day. I’ve never had surgery before and to say I was anxious would be an understatement. I had been waking up around 5-6 am anyways and was just watching the news when I realized there were two people standing outside my door.... I had originally been told my surgery was the 3rd of the day and I wouldn’t be going until about 11 am which gave my parents enough time to get my brother off to school and to be back in time to see me off... that’s not what happened. They had bumped me up to #1. Which meant my labs hadn’t been put in as needed ASAP and had to be run again but as soon as that was done? I was being wheeled away. What I didn’t know was that my mom had a nightmare that I had been taken to surgery early and that I died on the table... so you can imagine her reaction when I texted them that I was actually going to surgery early... needless to say my dad sped all the way to the hospital. Actual surgery though? I don’t remember a ton. I remember going to the holding room and being introduced to a bunch of people that I knew for all of five seconds before going into the OR. I remember moving from my bed to the table and then being wrapped up in a bunch of warm blankets and given the mask. I wasn’t told to count down or anything but within seconds I was out. I remember vaguely waking up to be moved from the table to my bed and I THOUGHT I had only fallen back asleep for the ride to recovery... apparently it was a lot longer than that. I woke up once in recovery and could have sworn they cut me open side to side but nope. It was a successful surgery with only four tiny incisions that hurt like a goddamn bitch let me tell you and then I passed back out... when I finally woke back up again I was awake long enough I was allowed to go to my room where my parents were relieved to see me. I was up walking within an hour (I was told I wasn’t allowed food unless I moved around and got the gas out of myself and had bowl movements. They recommended walking. I wanted food.) and that day was spent between doing laps and sleeping. The next day? The day I was suppose to go home? My labs came back with a high white blood count... and I lost it. Despite my parents visiting me every day I was tired of feeling alone. Luckily though Thursday I was finally released.... in time for my baby brother to graduate high school. Which was a fun ceremony when you’re hopped up on pain meds.

June- was a hot mess of dealing with medical leave at the job I hated, but mostly? It was spent enjoying the summer. Once I was cleared for activity I was swimming nearly every day and soaking in the summer with my two baby cousins who turn 12 soon. Despite the physical pain I had to deal with and the stress of work I wouldn’t have traded that in for anything. It gave me so many fun memories to look back on and enjoy.

July- I was suppose to go back about the 8th but medical leave was... a mess. And tbh at that point it wasn’t worth the stress to keep that job when for the time being I was making enough by doing side jobs for my family to pay my bills. I did start applying for new jobs though while I spent more time enjoying my summer with my kiddos. By the 27th though I was starting my new job, which is where I’m currently at while I type this long ass post but we’ll get into that a little farther down. Two days later though as I was about to start my first full day at my new job I got the text message I never wanted to get. I had to call my cousin/best friend. Long story short her mother had passed away meaning that she had lost both of her parents in seven years. Something I can’t even imagine. But not only that but it meant that my grandma had also lost her sister and best friend, and my great grandmother had to do the one thing no parent should ever go through.

August- was honestly a really intense blur. Between two weeks of dealing with the fall out of losing my aunt and starting my new job I didn’t have a life. In late July/early August though I knew something was up with my car but I honestly thought it was just a tie rod going bad... no. Apparently my entire undercarriage was more or less rusting out and I was screwed. I didn’t have any money saved up for a down payment, I had no idea if I could even afford a car payment yet (despite working a better paying job with more hours but I was use to basically barely making ends meet with maybe $20 left over). Luckily my parents who are the real mvps of my life stepped up and helped me figure everything out and I had a new car within a week of starting to search (she’s my baby girl. I’m obsessed. She’s literally everything I wanted minus the fact that she’s white and my previous car was white and I wanted to avoid that: but besides that... I’m happy with her and she’s worth the pretty penny I pay every month).

September- was a goddamn mess work wise. It’s all I did. Work.

October- I took my first major road trip on my own (driving 2 and a half hours by myself on the interstate. It was a big deal.) and saw FOB in concert which was... life changing. I completely recommend seeing them if you ever have a chance (also machine gun kelly was there and despite the fact that I don’t care for rap.... he was pretty good.). Other than that though October was more work craziness.

And now for November, and if you guessed work was insane... you’d be right. When I was hired in July it was all “oh it’ll only be busy until like October” and now my boss is like “maybe by March we can get our sanity back for two months?” Which don’t get me wrong I’m grateful. I’m making a $1 more an hour, actually working full time, and I don’t hate a majority of my coworkers (there’s still a handful though that if I had a shopping cart at work I’d run of their bare toes but that’s more because they make my life unnecessarily stressful) but I’m actually happy???? Like as stressed out as I am basically 24/7 I’m doing alright. I have a majority of my Christmas shopping done and wrapped which like?? And idk... I’m just.... I’m in a good place. And I won’t lie I still check myself once and awhile going “okay something is bound to go wrong.” But also maybe all the good is outweighing all the bad that I had to deal with. Anyways so that’s the life update. If you actually read that... bless your soul. Message me. We’re now best friends. And hopefully in the coming weeks I figure out what the hell im doing with this blog.

December update I wanna die lol! We had two people quit in three weeks leaving us with four people to cover 24 hours 7 days a week....it’s a great time.

#if you read all of this hi message me you're my new best friend

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makemyskinyoursanctuary · 6 years ago

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I hope you take the time to read this. Her story deserves to be heard. For months now, people have been telling me that I am so strong, but my mother was the definition of strength. She was also humble, generous, brave, funny, beautiful, stubborn, selfless and my hero. I'm not sure she ever understood the impact she left on people, especially me. Her story is heavy, from beginning to end. She never let me feel any of the weight. This isn't a read for the light hearted, but I want people to know what a warrior she truly was. My mom was born in Saigon, Vietnam. She was one of six children- the rebellious one at that. She was the socialite, the troublemaker, and very independent. She was the most unique of the sisters, as she was not analytical- she thrived in all forms of art. From early on, my mom was determined to follow her passions even though my grandparents were not able support it while living under the communist reign. She saved up all of her money, bought a classical guitar & sheet music, and taught herself how to play. She used to tell me about how she had a band with her friends and they would get together to sing pop music. Late one night, when my mom was playing, communist officers stood outside and listened for hours. After she finished, they came in and destroyed her instruments and music books.They tried to arrest her for playing songs from "the old country". My grandpa had to beg and pleaded until they agreed not to take her away. My mom was always fearless. She tried to escape the country 9 times, with a few of the attempts leading to jail time. But, even in jail, she made the best of it and made friends. The tenth and final attempt was made with her sister. She was in a group of 71 with 200 people overall that were trying to escape the shore. Her group hid beneath the deck of a disguised cargo ship. Between the captin not making it aboard and the storms that blew them far into the ocean, the two day trip turned into surviving 3 days and 4 nights in the terrifying waters. When they came into the sights of the pirates, they were luckily left alone and not pillaged like many ships before them because of the direction they were coming to shore from. They landed and began their chapter in refugee camps. There they stayed in camps in Thailand and the Philippines for two very difficult years, sometimes not having any food or water. My mom told me stories about sleeping on the ground under trees and collecting rain in plastic bags just to have water to drink. In 1983 the United Nations sponsored my mom and aunt and they moved to Utica. Her fight for the American dream was never easy. She had her heart set on going to college but had to take a job to provide for her and her sister. My mom ALWAYS had the strongest work ethic. She eventually married my father, got the chance to complete a degree in the Science of Photography and then opened our family legacy of Aversa Photography. My parents were a power house. Their business was undeniably one of the best studios of its time. They poured everything into the business and worked around the clock. My mom’s one regret was that she felt like she worked too much when I was young. When my parents eventually divorced, she became the sole owner and continued to keep the business going in case I ever wanted to take it over. Although I had worked in the studio for over a decade and also went to college for a Photo degree, she never pressured me into taking over the business. She always wanted me to create my own legacy and chase my own dreams. She took me to cheerleading practice, piano and violin lessons, theatre and drama club, art classes, voice lessons, choir rehearsals, and even ballet for the couple months I tried it. She actually did ballet herself for a while, which I don't think very many people knew. She was always my number one supporter. She even let me have house shows when venues would back out last minute, knowing how import the local music scene was to me. She also was a huge supporter of my friends. She put so much effort into going to their shows, galleries, and events. She treated so many of my friends as her own children. She just had a natural way of making everyone feel welcome and safe. Last May, my mom found out she might have cervical cancer. Wanting to protect me, she kept me in the dark. She wanted to get everything under control then tell me she was going to be fine. She never got the chance. In June she was forced to tell me about her diagnosis, as she was having trouble with scheduling her hysterectomy and needed me to be on call to take her, something she didn't want me to be a witness to. After a few weeks after her surgery, I took her to her follow up appointment, where the Doctor told her she was in the clear. He looked at me and said she didn't need any further treatment. It would be the same as me getting radiation or chemo because nothing was showing signs of possible cancer. I remember getting in the car after and my mom questioning it and I just tried to reassure her because I heard news that I wanted to hear. Still keeping very quiet about her health. She started to have pain in her leg and side and followed up with the original surgeon. He completely wrote her off and told her that she must be sleeping funny and to follow up with her primary doctor. They scanned and found no cause for the pain, no blood clot, nothing, but during her yearly appointment, her GYN reviewed all the reports and discovered that it stated that there were large fragments of mass remaining in her cervix all along. She fought with her insurance again to get a biopsy. Once again, she kept this from me because she never wanted me to worry. I'm very grateful for her friends that helped her through these times. When she got the biopsy finally scheduled after weeks and weeks, she broke the news that she may not be ok. I took her to get the biopsy and wanting to protect me as always, she waited until after Thanksgiving to tell me the news. My mom was a stage 4 with pelvic cancer. The months that followed were hard and painful. We went in and out of the emergency rooms dealing with the side effects of chemo. She suffered from multiple blood clots, a failing kidney, hallucinations, and hearing that she didn't have options left, but she didn't give up. My mom didn't want to give up for me. She agreed to go to the Roswell Cancer Center in Buffalo and keep fighting. She went through six full rounds of chemo and we hit a dead end. The doctor said we could try to do surgery to alleviate some of her discomfort and maybe eventually try other treatments. In late April, my mom went into surgery and two hours later the doctor came out to speak to me. I'm pretty sure my heart and time stopped completely. I thought he was going to tell me he lost her, as the surgery was so complex, however, he gave us news of a miracle. They were able to remove almost all off the mass and said that she should be able to have many good years ahead, with a few precautionary treatments. The day after the surgery, my mom stood up and walked on her own for the first time in so long. I remember her looking over to Sean and I with tears in her eyes thanking us as she processed everything that had happened to her. This was the first time in so long we felt real hope. She was released, and we took her home to Syracuse. She walked up and down stairs, cooked once in a while and started to have a little bit of life again. Within a few weeks her stomach swelled, and we found out the mass returned. Along with that came the pains in her leg and she once again lost most of the ability to walk. The doctor performed another surgery and placed a drain from the mass in hopes to shrink it to possibly do radiation. I took her to her radiation consultation in June, a year after she told me about her original diagnosis. They said radiation was absolutely not an option. They were going to try a different type of chemo and the chances of it working were below 30%, but if she wanted to they would try. I promise you there is only one worse feeling than explaining to your mother that we've reached the end of the rope. With the little bit of her that was left she decided to try the chemo knowing the chances. Because life wasn't tough enough as is, we lost my grandma the weekend before her scheduled chemo session. My mom was so tough. She wanted to see my grandma off and pay respects and come with us the long, grueling, 4-hour drive to Massachusetts. I think in her heart of hearts she knew it was the last chance to see the whole family at once. We came back that Sunday and Sean took her to chemo on that Tuesday. She really loved Sean and had a special bond with him the entire time she lived with us. When they got home, everything seemed fine. She didn't seem to have any really bad side effects this time around and then Friday came. We called an ambulance and she spent the next two weeks in emergency rooms fighting off sepsis. She spent her last Birthday in the hospital. That's something I'll always hate. Over the two weeks she was in the hospital Sean and I talked and decided we were going to move back to Utica. We didn't know if she had years left, but either way we were willing to commute everyday so that she could be with her community again. She had so many friends from all over, many of which didn't know the gravity of the situation (which I think is why I feel the need to write all of this). When we told her, she tried to fight us, because once again she was looking out for me. She often told me she hated that she was a burden. To this day, I still feel like going through this whole year or so was an honor, but we aren't getting into that yet. When she was finally released, we brought her back to her home. Within an hour people were at our door waiting to see her. My mom was such a special person. We had her next appointment for chemo and as we were driving to Buffalo I could feel something in the Universe shift. I knew this was going to be our last visit. I knew what they were going to say. She was too weak for any treatment. She was angry at the news. She didn't want to stay for her remaining appointments, she just wanted to go home. I had to sit there and plan out Hospice and watch my mom's heart shatter. The ride home however was not as grim as I expected. My mom seemed like there was a weight lifted off of her suddenly and she was in good spirits. The next day we began Hospice and things seemed relatively calm. Last Friday my aunt called me at work, she was visiting my mom for the week, and said something changed. Things didn't seem right. I rushed home and she told me my mom was doing a little bit better than when she called, but my mom wouldn't eat. Saturday morning my mom got up by herself and walked a couple feet, but by the time the night came around she was barely responsive. Sunday my mom was in incredible pain and spoke maybe 3 words. By this time all my aunts were either there, flying in, or in the car driving. I went to get some groceries to make dinner and said I'd be right back. This was the last time my mom kissed me on the cheek. She could barely lift her head or pucker her lips. I came home 15 minutes later to my aunt in the kitchen. We talked for a bit and then I went over to my mom. The time had come, it was beginning. She stopped responding. She was breathing but wouldn't wake up. The next couple days and nights were spent by her bedside. I slept in a chair at night holding her hand. I left to go see the funeral director as we knew it was a matter of time and got the call that it was starting. I rushed home trying to make it in time, but when I walked through the door she was gone. Everyone believes she waited until I wouldn't see, protecting me yet again. I have something inside me that's pushing me to tell these hard parts of her story. She would want anyone to keep fighting. She would want them to not believe the first doctor and to get a second and third opinion. She would want her story to help someone else. My mom's faith through the entire journey was remarkable. She believed that god had a plan and that was why she forgave the original doctor. It's true she was curable at one point, but she said that if God wanted her to live she would. She didn't believe people were meant to be bitter even through all of her hardships. I remember asking her if she was afraid of dying and her concern was that I wasn't ready for her to leave. My mom is undeniably irreplaceable. She is the Queen B. She is the reason I cherish art. She is the reason why I do everything to support the music scene. She is the reason I try to find grace in all situations and only find the best in people. She is the reason I try to be selfless like her and why I will constantly fight to be a better person than the day I was before. I'll spend the rest of my life trying to be half the woman she was. I just hope I make her proud. Her struggle is over and even in her passing she continues to teach me how to find strength. There's a void in my heavy heart that will never be filled. I love you forever lady. Thank you for everything, always. I hope that wherever you may be, there are NO peppers on your pizza.

#cancer restinpower mom

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atlanticcanada · 4 years ago

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N.B. rolls out plan for long-awaited healthcare reform consultations

New Brunswick is moving forward with healthcare reform consultations that were promised a year ago, when the government scrapped the planned overnight closure of six emergency departments.

"We understand that these changes may cause concerns for some since we all know emergencies can happen at anytime, day or night," Horizon Health CEO Karen McGrath said this time last year.

McGrath was joined by the CEO of New Brunswick's other health authority and the province's health minister in announcing the closure of six emergency rooms overnight.

There were rallies and lots of anger that followed, and a week later, the overnight closures were cancelled.

Instead, public consultations were promised -- but those were delayed because of COVID-19.

"I know we got off to a rough start and it got sidetracked on ERs -- which was a secondary issue," Premier Blaine Higgs said last Friday. "That was not the problem so let's hope we can avoid that this time and we can actually focus on the real issues and what role a community can play in solving them."

The province has launched a new healthcare consultation tour, but this time it will be held virtually.

The health minister has also released a discussion paper, looking at the issues the province is facing, among them:

30 per cent of hospital beds are occupied by seniors who need a nursing home bed;

There are 660 people waiting for a bed, but that could balloon to 2500 in five years if nothing is done;

45 per cent of New Brunswickers can't get an appointment with their family doctor within five days;

53 per cent wait longer than six months for hip and knee surgeries; and,

35 per cent of family doctors are eligible to retire within five years.

"We are interested in finding solutions," said Ron Aiken, the acting mayor of Sackville. N.B."We don't want to just complain about things, so we're interested in finding solutions. But we're not interested in solutions that take away the services we have. Because we think they're valuable for more than just Sackville, essentially, most of southeast New Brunswick."

Aiken says each community is unique, so there can't be a one-size-fits all approach.

Perth-Andover mayor Marianne Bell says she's heard from citizens concerned about the format, especially because on the topic of healthcare, there's lots to talk about.

The healthcare tour starts March 4, focused on the community of Sackville.

There are 15 meetings scheduled -- every Tuesday and Thursday until the end of April.

What comes out of these meetings will influence a five-year plan for healthcare in New Brunswick.

from CTV News - Atlantic https://ift.tt/3qqSH5l

#new brunswick #prince edward island #nova scotia #news #politics #canada #CTVAtlantic

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braindamageforbeginners · 7 years ago

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Hangovers

Cycle 3, Day 9

Two things learned in the last 24 hours:

1. I really need to shut up whenever discussing how things aren’t too bad, that’s just begging for a smiting.

2. I should probably not write about infusion days on infusion days, because the weird stuff tends to happen right before bed (largely because of my new, “Go to bed immediately if something weird happens policy.”

I had another odd, brief hallucination last night, to go with the crippling pain and limp. I was on Facebook, and the icons suddenly became sand castles, and, in a weird way I was suddenly at the beach, sort of (I can’t really describe it; if that makes any sense to you, kudos). And it is kind of frighteningly amazing how quickly these side-effects can set in. However, if you’re sober at the time (I realize that’s an extremely odd, almost self-negating concept when you’re being pumped full of experimental toxins), it’s not frightening. And my bedtime policy paid off; I didn’t become Timothy Leary.I woke up this morning with an unbelievable hangover. I realize I’m prone to hyperbole and exaggeration, but the one this morning had teeth. Which is one of those sorts of good-news/bad news things - I’ve noticed the faster and harder the serum side-effects hit me, the sooner they go. Also, you know how, when you had to get up early to go to school when you were a child, and Mom, in an act of breathtaking cruelty ripped off your covers off and lied, “I know you’re tired and cold now, but it’ll get better if you get moving.” Which, again, feels like a betrayal of sorts if you finally make it out the door and find out it’s 40 degrees. Well, dear reader, mom may been lying to get you out of the house, but I assure you - based on my own experience - once you get out of bed and a-movin’ (and, more importantly, eating and drinking)(make sure you take your zofran or any other appropriate medications), you’ll start feeling like your old self. Don’t rush that “getting out of bed part,” though, take time as needed (this morning, it felt like I actually had go through several stages of evolution)(side-note; you’re gonna feel much less human and more like a jumbled-together set of human cells at the start of activitiies). I went for an ultra-high fiber and coffee breakfast, which seemed to help - or at least reduce my physical description from “possible 90-year-old amnesia patient” to “nasty but manageable back and shoulder pain.” If all this seems meaninglessly detailed, well, yes, it is. I wish I’d known four months ago that switching to a largely coffee-and-raw-fruit-based diet could save me some pain. Definitely I’m feeling immeasurably better and less-mentally foggy (I successfully recovered my Spotify username and hassled the DMV about my ongoing bureaucratic feud), although I’m still definitely showing signs of sleep deprivation and exhaustion, I’m not too bad. Except for some back pain, which probably isn’t that bad, except it is a novelty for me (sort of, it’s happened to me frequently enough that I know to just grab the Tylenol salt-lick).

So, bad news for you guys, mentally-capable yet too physically sore to anything terribly ambitious is the horrible sweet spot of “might as well sit down and write. Something a friend mentioned on Facebook got me thinking; if I’d been told I’d have to heavily modify my diet (sort of; after six pm I believe I’ve done due diligence), schedule (again, Temodar is very weird, and I’m glad I’ve finished it for this cycle), religiously take lots of various pills, get a lot more cardio exercise, sleep a lot more than I’m used to etc. a year ago, like most of you, my first thought would be, “Oh,God, I’m gonna die.” And, to be fair, the night is young (and I still have that new blip on the MRI); but you’d amazed at what you can adapt to. And after a while, even though you still hate all those things, your body will help keep you on the straight and narrow (mostly because your own body will start actively punishing you if you don’t keep up) Don’t get me wrong, I’m still grumpy and irritable and not going all Tuesday’s with Morrie, but there is a sense that, denied a lot of other of life’s options, I’d double down on the Warlocks, see how far that took me, and leave the black flight box behind for the next folks in line. And now I’m having hallucinations, which, while I can’t claim is something I’m happy about, but it’s definitely not boring,.

Speaking of strange developments, I had some time to think about Ronny Jackson (as it turns out, television news is the perfect thing to watch when you’ve just been pumped full of various suspicious chemicals - there’s no plot, there are no characters, everything lasts 45 seconds, and you don’t lose much of he information) and my constant harping on about finding top-grade professionals when you’re in my situation. Firsoff, I require that level of competence not because of my personal preferences, but because I have a rare, amazingly dangerous disease that’s already behaved unpredictably. If this was standard colo-rectal cancer, I’d probably go to the Local Health Mart. Not to slam anyone, just that different diseases require different levels of management and training (diabetics are allowed to live in society and actually have their own insulin). The common thing you want - from your GP to your neurosurgeon (okay, especially your neurosurgeon) is to be 50th case like yours they’ve seen, not the first (as Dad described it when choosing his orthopedic surgeon)(that’s not the only indicator, but we’ll come to that point briefly). And that doesn’t happen unless the doctor (or nurse) is out there practicing (oddly enough, younger doctors make better doctors because they don’t have the professional pride/investment that would discourage them from getting a consult)(that was in a study I read). Which means that the current physician to the president has had two patients in ten years, one of whom was, by all accounts, quite physically healthy except for a history of smoking (I’ll discuss that some other time), and another who’s not completely healthy, but that would require a neurologist and nutritionist. One middle aged man and an elderly-but-previously healthy man. Most practitioners could get out some folding chairs, grab a six-pack, and let the situation play out until someone had a noticeable complaint (TWISTED SIDE NOTE: I just realized that all of my complaints/symptoms have, so far, not come from any disease process, but from side effects of treatment)(my apologies if any of my doctors or nurses are reading this, you’ve all been great, but that Zen Koan is true . Unless they had some sort of horrific, undisclosed disease. That’s barely qualified and experienced enough to lance a boil. And he got his job through Yelp, basically - Obama liked him and wrote a letter of recommendation, and so did Trump. And, in total honesty, now that I have artificial middle-age aches and pains, I’d like anyone who offered me Percocet, too. Mine are mostly-manageable with Tylenol, but infusion days are vicious, and if that was a daily occurrence, I’d make out with anyone with Percocet,

This isn’t actually about Ronny (it’s about widening the scope of this essay so it’s not another gripe-fest of me neurotically keeping track of symptoms), it’s about finding good clinicians. I’m still trying to figure that out for everyone, and I’m only beginning to sort through that data (also, there’s a good chance I’ll die during he attempt, but that’s also not the point of this piece). Ronny is obviously not a good doctor (he might be a fun one, though), but he does provide some lessons.

First, you don’t have to like your doctor. Yelp doesn’t have to like them. You have to trust them. I realize that’s not always easy to sum up, but all of my physicians (and probably nurses and other folks I’m ignoring or forgetting because there isn’t any data available that I can find) have been driven to be better doctors than they are now - that sometimes takes a bit of research (Mad Scientist has an impressive number of papers on PubMed) to figure out, sometimes a neurosurgeon will discuss some new drillbit he helped design to get through the skull (okay, I’m getting the details of that incident wrong, but it happened)(It’s a little off-putting to hear that described in the same glowing tone as developing a new, experimental bratwurst for the.county fair BBQ. But he’s been my neurosurgeon for two extremely successful surgeries. And I might need to revisit him before the year’s out (I hope not, obviously)

Which also brings up a teachable moment; for years - a few solid decades - the medical industry recruited and adhered to the standard that as long as you were competent, you could be an utter sociopath. Which, according to some sources, Ronny is. It’s not even some medical secret, it’s a common stereotype in the media. I suspect that the medical industry is trying to combat this more actively, but, in my first semester, I met a guy (you go to as many study groups as you possibly can when possible) who probably had a favorite hooker buryin’ spot. I listened for ten minutes (and I don’t know how I lasted that long; I should’ve just conspicuously glanced at the clock and fled, as my smarter classmates did. It was 10 minutes of narcissism and genocide (not exactly, he felt that poor people got plenty of insurance, and put-upon hospitals should be able to kick them out on the street)(which actually happened to me at one hospital, thanks to the insurance companies using an obscure legal loophole) I think that was the point I left Mr. Wonderful’s company (If I die and end up the traditional Judeo Christian afterlife and am made to atone for my sins, I’m sure St. Peter will want to know why I didn’t follow that motherfucker back to his apartment and kill him with a shovel, I know it a dark thought, but no darker than the probability that he got his MD, passed all his boards, and was set loose upon an unsuspecting public. But that’s just one guy amongst thousands of potential doctors, Ronny’s been accused by a few sources of sociopathy, As a patient, it’s almost not even worth worying about them - you will know them when you see them. Or, rather, when you talk to them

Another checklist item: if your doctor enjoys where they live.

I’ll continue this thought tomorrow (or technically today)

Author’s note: I spent 12 hours on this thing (sort of; after starting it in the morning (obviously), there were various distractions and errands and infernal family members demanding my time, So the last hour or two was mostly desperately typing before exhaustion took me. So I edited this thing a bit.

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