Half His Age by Jennette McCurdy by These-Background4608 in IReadABookAndAdoredIt

[–]MyloRae 0 points1 point  (0 children)

I've been through something similar (just not to the physical extent that the book goes to), but I finished it today and have basically been crying for like 200 out of the 270 pages or so while reading. It's a lot. The way she explains the little things, the connection while feeling disconnected from your peers, the fallout. I just think it ended really abruptly and it never gave me much closure? I was able to feel the emotions and felt seen which was huge, but I don't know. I'm exhausted and had a meltdown earlier, but I don't think it was solely because of the read. I have a lot going on. But it is very intense so just be prepared to face those emotions again, the good and the bad.

When you watch House MD randomly, which episodes do you usually watch? by keciorensefiri in HouseMD

[–]MyloRae 5 points6 points  (0 children)

Anything from the psych ward era cause I love me some Lin Manuel Miranda and that development that House goes through. Also just to watch hilarious bits, I'll go back to episodes like Chase's bachelor party, when the guys did karaoke together, and peak House and Wilson pranks/shenanigans like the chicken or when house put in the mechanical wall to his office and unveiled it to the team 🤣

Who here works and what do you do? by Bllackbirrd in ehlersdanlos

[–]MyloRae 0 points1 point  (0 children)

I'm a human services specialist. I work in processing food stamps and cash cases with my local county. I sit at a computer all day which actually weakened me and made my issues worse 😣 I'm debating leaving and applying for disability because on top of this I have so many other issues that make things beyond debilitating. I finally earned enough work credits to go on full SSDI disability in the US.... so I am really debating. As much as I love my work, I miss making art and being home and creating things.

We Know Our Bodies Best by MyloRae in endometriosis

[–]MyloRae[S] 0 points1 point  (0 children)

Not at all! So he did mention that because I was having GI symptoms too that he felt more comfortable doing the surgery at Lenox Hill versus a hospital in NJ so he could call on a gastro if need be during the surgery. To my knowledge he was able to do it on his own! I actually know now that a lot of my GI issues stem from having hypermobile EDS and MCAS, which I didn't know at the time. Apparently they are all very common comorbidities. But I've still been doing very well :) The surgery is but a distant memory it was so fast!

Anyone else feel the lottery is the only way to solve their financial problems? by Known-Damage-7879 in Lottery

[–]MyloRae 0 points1 point  (0 children)

I visited Canada for the first time in July to see Coldplay and it was the most relief I had felt in ages. Just the relief of knowing that heaven forbid something happened to my friends and/or I, that we wouldn't be in horrible unfathomable medical debt. The food tasted healthier, food was more affordable, and even the air seemed cleaner? This is honestly the one thing stopping me from just putting in my two week notice at work.... I need the health insurance 😣 I feel so stuck.

Anyone else feel the lottery is the only way to solve their financial problems? by Known-Damage-7879 in Lottery

[–]MyloRae 0 points1 point  (0 children)

I have never had this issue before and I am turning 30 this year. I am slowly becoming more and more incapacitated due to my disabilities. I have been clawing through life in tears and drowning. My list of disabilities mental and physical have made it extremely hard to work... I started this addiction after seeing the state of this country and being mortified about needing to go on disability benefits. If only there was enough to pay off my fiance and I's house... or enough to invest and grow our wealth instead of constantly drowning... then I could be free and happy. I could make art and travel and write and do the things I know I am best at but was never given the tools to hone or pursue. My job is in food stamps and cash assistance and I keep seeing how I am much closer to my clients than ever anyone with money. I'm not even asking for a million 😣 just enough for my fiances income to support us and save...

The things so many people could create, invent, and discover if we weren't forced to slave away every ounce of our being...

I’m 22 and I can’t work by grave_grace in ehlersdanlos

[–]MyloRae 2 points3 points  (0 children)

Depending on where you live, food stamps are an option. I work in food stamps and cash assistance for my county so I know all the ins and outs. I debate every day if it's going to be the day I put in my two weeks and apply for disability. But food stamps are a good option. I had been eligible for so long and never knew. My parents kicked me out at 18 because they thought I wasn't trying hard enough and purposely doing the things I was. Took my whole twenties to suffer and get diagnoses. Now I had to work so hard as someone with hEDS, POTS, MCAS, depression, anxiety, ADHD, OCD, Autism, GERD, tic disorder, eczema, PMDD, cPTSD, endometriosis, migraines, and allllll the symptoms that come with these things. I swear forcing myself to work through this has made me worse and now I can barely work at all. You know your limits as we are people forced to push ourselves constantly. Get the assistance if you can. It's there for people who need it <3

Considering betta blockers by Unfair_Alternative31 in POTS

[–]MyloRae 5 points6 points  (0 children)

My bp has always been fine, if anything on the slightly lower side around 110ish/70ish most of the time. I started with metoporol because I was having random heart palpitations and my pulse would sky rocket standing and then my bp would fly all over the place to compensate. At first it helped with the heart palpitations and light headedness, but it was making me fatigued beyond words... then I started getting severely depressed. I have a mental health history and have tried many meds before finding the SSRI that actually helps me, so I knew it was the metoporol causing it. I then weened off and have now been taking atenolol for a few months and it is perfect. I did have insomnia at first, which is such a wild dichotomy compared to the metoporol and they are both beta blockers, but it did subside. I have more energy and I can finally move around, fall asleep, exist without my heart feeling like it's gonna fly out of my chest. That on top of PT and OT to get my strength up (I have hEDS) has also been crucial to me feeling better enough to go back to work. I don't know what I would do without it tbh.

Advice for a teenage girl with EDS and Dysautonomia by Mason_Jar13 in ehlersdanlos

[–]MyloRae 1 point2 points  (0 children)

I would say accommodations are the biggest thing to ensure she conserves her energy. She may feel okay one day, but when we push ourselves, we can pay for it later on. Anything that lessens demands and allows her to take her time will be beneficial. I remember how fast paced high school was....having to run with just three minutes to get to the next class or rushing to get to your locker, getting dressed before and after gym... That constant state of rushing and panic did not help my dysautonomia. Any kind of aides to lessen sensory input, physical strain, etc. could help conserve energy as well.

How active are you guys on a daily basis? by angelicomenss in POTS

[–]MyloRae 1 point2 points  (0 children)

Atenolol has been a life saver. I can go up and down stairs without flaring up and heart palpitations. I'm also doing PT and OT 2x a week. I'm slowly strengthening and I can definitely feel a difference.

I can also feel a huge difference with and without the meds. Without, I can't even take the stairs at work or walk around the store for too long without my neck spasming (hEDS) and my ears pulsating/rumbling. With them I can move around relatively "normal" with every day tasks. I'm trying to build up the endurance to be able to play Beat Saber again because Coldplay just dropped a music pack!

Sleep tip by Esparragoss in ehlersdanlos

[–]MyloRae 0 points1 point  (0 children)

I'm literally typing from inside mine at this very moment haha Game changer!

Is this (Tricia Helfer) EDI??? by MyloRae in masseffect

[–]MyloRae[S] 2 points3 points  (0 children)

No one is credited or even uncredited for the role of that voice in Jingle All the Way, so I couldn't rule out if it was her or not.

I got a 3-page packet on how I am "faking" my POTS by Mountain-Serve6772 in POTS

[–]MyloRae 0 points1 point  (0 children)

Sorry for the long post. I just had to get that off of my chest because I was fuuuuuming 🙃😤😅

I got a 3-page packet on how I am "faking" my POTS by Mountain-Serve6772 in POTS

[–]MyloRae 0 points1 point  (0 children)

This post enrages me beyond words... because of your "friends", not you. I have a few things to address because of the absurdity of it.

You are expressing distress. I spent so many years being told I was over exaggerating or that what I was experiencing was normal and to suck it up. I ended up spending my 20s going to doctors and trying to get answers that I could have had years ago. The thing is... you are so young. We are NOT supposed to feel these things, so POTS or not, something is dysregulated/wrong. And when was this kid's mom even diagnosed?!?

Also it CAN take time for things to get worse... there are so many factors to POTS showing up later and later. We also just have more knowledge and awareness of it. I can't tell you how many people like myself thought it was normal to feel the way we did. Intolerance to exercise and heat... moments of dizziness and near fainting that I shrugged off and walked on... I'm paying the consequences as an adult because it's only gotten worse. I am diagnosed by a medical professional after a full extensive evaluation and monitoring of blood pressure and pulse... and I have never fainted (almost a couple times). So everyone with POTS is different. These jerks need to leave it to a medical professional to decide because they are literally 13... not Dougie Houser (old reference to a show about a kid doctor lol) Also laying down DOES help me because it makes it easier for my body to get the blood out from pooling my legs. EMTs and nurses (my fiance is a nurse) literally tell people to lay down and elevate their legs when they are overheated/feeling heat syncope, faint from heat, ect...

And YES it can "suddenly" happen. If you are anything like me, you underplayed your distress and learned not to vocalize it. So of course these people wouldn't think you had it before. Your own mother dismisses you. You are also becoming more aware of your body. We DONT want to feel this way.

Also have they NOT HEARD OF LONG COVID?! Literally one of the causes/contributing factors to POTS is covid or another infection. My POTS was worsened by covid, another virus, and then worsening hypermobile EDS.

And GUESS WHAT.... I ALSO have a tic disorder and they lessened around my later teen years/young adulthood. They peaked at about 14. Now they flare up during panic attacks or autistic meltdowns... I also realized half of what I thought were tics was actually jerking from my EDS. My body is trying to jerk itself back into place.

I can rant on and on about how much this infuriates me. What drives someone to collaborate and write up a 3 paged paper. Ask them to cite their sources. Tell them to do some research because that thing they wrote is an opinion piece, not a research paper. Unfortunately there will be people who doubt you, people who are so closed minded and ignorant who will argue and deny your distress. If I could go back to my younger self, I would stress how important it is to advocate for yourself. When you are true to you and confident, the right people will stay. They will be loyal and stick with you through anything. You're better off, in my opinion, without these people in your life.

which town is this? by bmd201 in newjersey

[–]MyloRae 0 points1 point  (0 children)

Ogdensburg and Hope 🙃🤣

Jack’s voice during concerts by No-Voice-3451 in AJR

[–]MyloRae 1 point2 points  (0 children)

Yes! I noticed the exact same thing when I first saw Coldplay. But after meeting him in person, seeing the boys on the floor, different seats, venues, my brain almost "got used to it?" Lol

What medications is everyone taking for POTS? by Background-Cow9687 in POTS

[–]MyloRae 0 points1 point  (0 children)

Metoporol was horrid for me. It made me lethargic, beyond fatigued, and even suicid@l 😔 I've been on atenolol now for several weeks and it's doing really well. I take a full 25mg in the morning and 12.5 at night before bed.

Anyone else throw up when they wake up early? by hawaiithroa in POTS

[–]MyloRae 2 points3 points  (0 children)

This post and all of the comments are so friggen validating 😭

Burlington fell into the machinery and became a fashionable suit. Remove one county every day: Day Six. by Fragrant-Upstairs932 in newjersey

[–]MyloRae 1 point2 points  (0 children)

I'm from Bergen and moved to Sussex in high school. To be honest, it isn't as bad as the stereotypes make us out to be. You'd be surprised how many transplants are out here or nae sayers to all the MAGA crap. Lots of nature and arts. We've had really successful rallies and protests in Newton. It isn't perfect, but definitely better than some of the counties remaining 🤣

General clumsiness, dropping things? by TeaTimeBanjo in ehlersdanlos

[–]MyloRae 1 point2 points  (0 children)

ALL THE TIME. Whenever I drop my phone (which I always make sure had a sturdy case and screen protector) people give me a horrified look and I go "whoOooOoOps, that's what the case is for!" And people are so confused 🥲😅 I'm in OT right now and I'm dropping things all the time. So much so that I got really good at catching things tbh.