u/PlentifulPaper

Has anyone else experienced this before and are there any insights?

48 hours ago I started getting some acid reflux symptoms - heart burn, noticed an extra gurgling/grumbling stomach after eating, and even felt like I had some mild pain behind my shoulder blade.

Currently on Sodium Cromolyn, (1 vial 4 times/day), 80 mg Pepcid daily, and an antihistamine. No diet changes.
Took a Peptobismol that night to help me fall asleep, and it’s been slowly getting better.

This morning I woke up with mild pain around my upper chest, armpit area but it’s been an improvement over the last couple days.

I wasn’t sure it was the Cromolyn till this morning. Woke up, took my normal dose and instantly had that stomach acid sensation where I felt the stitch move from my belly up to my ribs.

Just had breakfast closer to 10, and after eating, instantly had nausea and vomiting.

I’ve been in Cromolyn now for over 4 months at this same dose and am just at a loss. I know I can’t go up any higher on my Pepcid, and this med has done so much to give me my quality of life back.

Just a preface that this is absolutely a rant.

Working with a company and they really haven’t been great at communicating.

Sent raw materials in, and followed up with a bunch of processing questions and specs, only to be sent a random email one evening to tell me they started, and they were having issues (ignored my direct instructions).

Got looped in to an accidental shipping charge, and I have in writing the fact that we aren’t considered a “professional” company and a bunch of other insults due to a simple mistake (that happened on the carrier’s end) and was not my team’s fault.

It took a few minutes to reverse and reissue the correct thing, and the charge disappeared.

Now they’ve failed to notify me that their pickup process has changed, and it wasn’t till I explicitly asked about not having a specific piece of information (that’s always been required in the past), that they elaborated that it was no longer needed - which meant I just wasted a whole bunch of time, waiting for approvals.

The kicker about all of this?

They failed to let me know there’s a variable waste factor, which meant I ended up with less finished product, and had to take the fall when talking with my manager.

They refused to put anything in writing and told me it was a “miscommunication” (via phone), despite my sending multiple follow up emails, and voicemails (within 20-30 minutes) when things went funny, and claimed not to know anything about additional materials being shipped.

The rest of my team is also mostly female and they’ve had no issues communicating as process specs were dialed in, things were adjusted as needed, and getting ahold of the correct people.

Somehow it’s just me, that keeps having major problems. 🙄

Currently diagnosed with POTS and MCAS. Lived in my current location for a little over 2 years, but it’s pretty rural and a small town of ~10K. Fought like hell to be diagnosed, and to find medical professionals who can help. The local medical options have all referred me out for cardiology specialists for POTS (2-3 year waitlist).

Working closely with a MCAS specialist (immunology focused), who I drive ~2 hours to see in person. Has asked me to give him a year to help get me stable. We’re a few months in and I do feel better.

To be honest, I don’t have friends, or a community to lean on and I’m at the point where I’m struggling pretty badly with the heat, and the isolation is making my mental health tank. I don’t see any changes happening to the social scene here.

Mid to late 20s, and I’ve run out of hobbies to connect with people on. There are highlights of course, when my health allows me the opportunity to participate, but I find as time goes on, I’m getting more resentful of my 45 minute commute each way, and all the awful driving to attempt to connect and build a community.

I’ve not started job hunting, but was considering moving closer to home (within 4 hours) to have access to more opportunities to find community, and to have access to better healthcare (currently have ISO posts out in the Dysautonomia International groups for specialists in the area).

Is it worth putting my happiness over my health? I keep feeling like the longer I stay here, the more I struggle.

Woke up this morning and immediately felt “off” as soon as I opened my eyes and knew it was going to be a rough day.

Took my time sitting up, and realized almost immediately that I was dizzy from a flare, and the best thing I could do today was rest. Managed to shower, take meds, and get myself some electrolytes before deciding to cancel the rest of my plans for today.

I hate how I’m always crashing on Sundays and then pushing through the work week because I need to get paid.

I felt really good yesterday! Saw some friends (nothing strenuous, sat in the AC and talked), went to the farmer’s market early in the morning when it was still cool, and meal prepped (my crock pot has been a lifesaver).

Just frustrated and sad that I can go from feeling awesome, to flared, and unable to stand safely, never mind drive.

Just throwing out there that I do plan to reach out to my Parish Priest when I get home.

I went on an amazing week long vacation - all expenses paid, ranch riding experience this week. It was awesome in all the ways that mattered to me.

However, upon arrival it was very clear that “witchy energy”, “communing with nature”, and talk of spirits, energy, and interpreting things that happened as “signs” was standard for most of the participants, and facilitator.

It made me, as a practicing Catholic pretty uncomfortable and I tried to listen to what was being said, and interpret it in ways that were not against the teachings of the Church.

Ie when someone was discussing a traumatic experience and referencing “bad spirits” and the like, I took that as things like body language, posture, and intentions from someone’s actions were not good.

There was an option to do tarot cards on the New Moon etc that I hardcore passed on, and just went to shower and pack instead.

To be clear - I did not participate, and while I enjoyed the experience I do come back feeling a little gross.

Do I need to get the things I’m bringing back blessed? Some flowers I picked, a leather bracket, t-shirt, belt buckle.

Just wanted to post a trigger warning that this documentary surrounding Mackenzie Schrilla’s actions, and her (eventual) murder trial, has the parents blaming her (premeditated murder) on “POTS” and that she “passed out behind the wheel” as an excuse for their child’s actions.

I was watching it with a friend and it made me so angry! We actually stopped the show, and she asked me a bunch of questions about POTS which was cool!

But I just can’t believe that the (shitty) parents would try to blame their child’s actions on a chronic illness that already has such a bad name in the medical community. They also had no medical documentation to back up the supposed “diagnosis” in the case.

Genuinely just venting at this point.

I had family come down last weekend to visit so I showed them around town. That (inevitably) led to eating different foods, going to bed later, and just feeling stressed about managing my folks.

Ended up in a POTS flare by Sunday (HR hit 160 standing) and spent most of the day in bed. Felt better Monday after work so I played catch up on all the chores that hadn’t gotten done.

Tuesday I ended up in an MCAS flare because I was silly about eating food I’d prepped. According to my doctor I’m “doing everything right” and “we have to wait for it to pass” which is frustrating and I feel so embarrassed for how I look at the minute.

I’m on H1, H2, and Cromolyn meds. There’s nothing else they’d like to add.

My face continues to slowly get puffier - especially around the lower lip, and under eye area. I flush when eating (more than I normally do) and I’m traveling for work this week and packing is always a stressor (never mind the food I’ll eat). My lymphatic system is struggling - swollen throat glands and even a daily lymphatic facial massage isn’t really cutting it anymore.

To top it all off, I woke up mildly itchy this morning and I’m afraid to eat breakfast. 🙄

I did just want to put a post up that Ranch of Rivershine does work well with CrossOver to be run on MacOS! I only briefly played through the tutorial, but it’s exciting to not have to wait till the developers port it over to the Switch to get the option to play.

Today is my birthday.

I woke up to a text from my grandparents, and have had a smattering of friends, sending wishes throughout today. Even my boss, and coworkers have wished me Happy Birthday. My sister made a point to reach out to me before she went on shift, and I even had cousins who I haven’t talked to in a minute reach out.

Heck, I even had a retired coworker offer to take me out to dinner tonight to celebrate.

My parents on the other hand have been radio silent. Now it is only 1:30 pm here (so the day isn’t over), but I was kinda hoping for something rather than nothing. They did get back from a trip last night and are probably tired and busy but I feel like I’m just making excuses to justify the silence.

They are planning on driving to visit me to celebrate over the weekend (and are seriously stressing me out over the whole thing because we need “plans”).

AITH for feeling sad that both my parents haven’t wished me Happy Birthday?

Any tips or advice to combat this?

I feel like at the moment things are on the upswing for the MCAS (and as a result the POTS) after I fought the last month to get up to the prescribed dose of Cromolyn.

Unfortunately I feel doomed to collect more diagnosis like people collect Pokémon cards. TSH is super out of wack and I’m now jittery, anxious, and super fatigued this week. Add in a yearly blood draw at work (for medical insurance purposes) and they’ve found more issues with my cholesterol.

I know it’s important to stay on top of, I know I’m running off like 3 hours of sleep, but dealing with all of it, is so not fun.

I don’t want to see more doctors, fight the system, or advocate for myself anymore. I’m sick of my parents offering their (entirely unsolicited) opinions on my medical issues, decisions etc.

I literally had to bribe myself to take meds tonight. 😳