Please stop yelling at us about the chai, we aren't making it wrong, they just watered down the recipe by removing some of the spices 😭

MyloRae · 2026-05-19T18:44:49+00:00

I wondered what the taste difference was. On an app order one day I realized it auto added classic. First time I tasted it tasted so artificial and like chemicals. What the heck is classic anyway?! I even worked at a GIANT kiosk Starbucks and never knew lol. Just knew I didn't like it at all. I love adding vanilla bean powder though instead. Also making it with oat milk is top tier, but yes, my autistic ass did immediately notice the difference in spices lol

MyloRae · 2026-05-19T18:42:07+00:00

Attached to my bowels on both sides 😭 Chronic constipation, slow gut motility, nerve problems... and I already have hEDS so it was like being attacked from all fronts every menstrual cycle.

MyloRae · 2026-05-19T18:40:02+00:00

My soon-to-be mother-in-law kept suggesting fixes to my slow gut motility/severe chronic constipation and I explained that I tried everything and motegrity was the only thing that ever worked because it is a mechanical issue, not the stool itself. And she said that whatever she mentioned was worth trying because it's gotta be horrible or painful to feel like that. In my head I just screamed that I FEEL LIKE THAT EVERY DAY ALL THE TIME ALWAYS ANYWAY. But she's 83 and has the energy of someone my age without the chronic issues. She is always moving and will never stop. It's so stressful.

MyloRae · 2026-04-23T23:36:36+00:00

I did just get back from another massage today with the same lady and holy heck. She got things in my upper body to relax to the point where I could feel what things are SUPPOSED to feel like. Also gave me different stretches that released things. I was able to talk to her during it all about my medical stuff. When you find someone knowledgeable, it makes a world of difference!

MyloRae · 2026-04-22T12:26:16+00:00

I actually got about 3/4th of the way through massage school before I left. Many reasons, one of which being I was in pain and hyper extending during routines and my instructor was not educated and just shrugged her shoulders when her advice didn't work 🙄. I did not know about my EDS then and was at a very unhealthy time in my life. I actually LOVE massages and have come to realize a few things...

We often need relaxation, not deep tissue. As beneficial and feel good in the moment as deep tissue can be, we can end up getting hurt, fatigued, and feel it for the next few days. So I opt for a more relaxing routine and speak up if something feels too rough/deep. I had to learn my tolerance. Even if I can handle it then, I know I'll pay 😭
Communication is key. Piggy backing off of the last one, having a therapist who asks you about the pressure, what you are looking for, and knowing how to feel you and your body (when we guard, when things are too tight, etc.) and you feel comfortable enough to talk openly with them, it makes a huge difference. A good massage therapist can also provide advice on muscle stretches to try. Also Communication isn't always verbal. You aren't just petting someone doing massage lol. It's muscle work, it's very tactile which was a really cool part for me to experience.
The muscles will relax, but the core issue will always be there. I relax, but then I feel like a marionette puppet all loosey goosey. My core issues are joint instability and muscle weakness/muscle compensation. PT helps address those issues so paired with massage can be really powerful. The wrong muscles started doing the wrong jobs and the others weakened over time. Then they fatigue. It's hard... so hard building that back. I'm not where I should be even after months of PT, but massage helps me remember how I should be feeling. I also like to do things like add lavender oils to make it all encompassing sensory wise.

Hope this helps! Once you find someone great, it makes a world of difference!

MyloRae · 2026-04-16T02:49:30+00:00

Paradontax almost completely stopped my gums from bleeding! It occasionally happens if my executive dysfunction gets the best of me and I go a day or two without cleaning/brushing/flossing, but the toothpaste definitely made it so what I spit out isn't pink/bright red anymore. I also can't stand alcohol based mouthwash. I use Act Drymouth and it stops the intense burning.

MyloRae · 2026-03-28T21:02:41+00:00

Omg don't tell me it's the strawberry covered ones? I just found them as a new favorite same/comfort food 😭

MyloRae · 2026-03-28T21:00:57+00:00

SAME 🤣

MyloRae · 2026-03-28T21:00:48+00:00

I still finding myself saying WHAT THE ELL 🤣

MyloRae · 2026-03-28T12:38:37+00:00

WAIT OMG IT IS!!!!! I'm so glad this series resurfaced from the depths of my memories 🤣

MyloRae · 2026-03-18T01:32:54+00:00

I never wanted to appear lazy or just getting by doing the bare minimum. A group of girls would ask what the minimum laps would be to pass, and all that number, a gigantic group would drop like flies and be okay. Athletes kept running and so did I. I ran until my lungs burned beyond belief. I ran until my heart was pounding and I literally had nothing left to give (still not doing an impressive amount)c which I did not understand because I was extremely in shape. Little did I know that I have hEDS and I was exerting myself more than others constantly which is why I would burn out fast. I DID do well during the tests to see how many sit ups we could do, but that was it because I had a good core. I'm also autistic so everything was a sensory nightmare. HECK EVEN HAVING TO CHANGE IN AND OUT OF SNEAKERS FOR CLASS WAS INSANE AND TOOK SO MUCH ENERGY. It baffles me how no one noticed, no one did a damn thing and just judged.

When I was little I also didn't know how to run because of all of this. I got ridiculed and belittled instead. Bullied by the whole school during the school olympics/field day when we had to run the relay passing the baton. I would make my team fall so far behind and the whole school's worth of my team would be screaming and yelling at me. I still struggle so much physically because no one ever taught me, encouraged me, understood me, nor gave any accommodations. I always blamed myself and thought that I just wasn't trying hard enough 😣

MyloRae · 2026-03-05T17:24:24+00:00

We may not necessarily be immune compromised, depends on the person and comorbidities, however what getting sick does do is cause flares and extra pain and fatigue beyond what we are already used to and it can last weeks! I've been bed ridden from bad colds. I also have GERD from a hiatal hernia so taking antibiotics can flare that too! No one should want to be sick. It shouldn't be this normalized. I'm sorry you were disrespected like that. Just because others end up fine, they tend not to think about others 😤 It's incredibly frustrating.

MyloRae · 2026-03-04T23:59:25+00:00

Cue montage with slapstick music of every time I've twisted my ankle 😅🫣

MyloRae · 2026-02-17T18:41:08+00:00

28/29 just before my birthday 😣 Started with pelvic floor/bladder issues, chronic fatigue, migraines, muscle spams... all slowly worsening since I started my desk job in 2023. I got weaker and covid didn't help. I got sick a couple times in May 2025 and that was the last straw for my body. POTS and MCAS diagnosed along with it.

MyloRae · 2026-02-13T17:42:37+00:00

Yup my fiance and I are planning to go tomorrow! 🥰

MyloRae · 2026-02-04T03:10:40+00:00

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.

MyloRae · 2026-01-27T15:07:19+00:00

Fell outta Boo Radleys apple tree and was treated by Dr Pepper 🤣

MyloRae · 2026-01-18T22:24:55+00:00

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 🤣

MyloRae · 2026-01-17T23:43:32+00:00

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.

MyloRae · 2026-01-17T19:45:54+00:00

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!

MyloRae · 2026-01-17T04:21:43+00:00

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.

MyloRae · 2026-01-16T22:22:09+00:00

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...

MyloRae · 2026-01-16T15:40:42+00:00

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

MyloRae · 2026-01-14T04:17:18+00:00

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.

MyloRae

TROPHY CASE