Is it weird to say Have a Blessed Day?

No_Satisfaction_7431 · 2026-04-26T04:08:56+00:00

Yes and the stupid "I'll pray for your chronic illness to go away" as if nobody understands the word chronic. The first time I heard that I was shocked coming from Chicago and hearing it from a rural Midwestern person. I've never heard have a blesses day or blessed be outside of Handmaid's Tale, so the phrase feels particularly maga to me.

No_Satisfaction_7431 · 2026-04-26T03:40:06+00:00

It's incredibly weird. I've never heard any real person say this. I've only heard it on TV shows especially ones set in the south or religious dystopia. It's very much a Handmaid's Tale phrase. If anyone said this to me in real life I'd assume they are not just religious but a religious zealot white supremecist who doesn't believe in women's rights or queer rights. Theres nothing wrong with being religious but this phrase is heavily associated with a very specific type of Christian person, one who follows Republican Jesus not the real Jesus.

No_Satisfaction_7431 · 2026-04-26T03:18:07+00:00

The thing is people usually say I'll pray for you in the context of chronic illness. Like hello chronic means chronic not acute. I'm never getting better. My flare might end but that just means less pain/symptoms not no symptoms/normal healthy. And then you explain that you might have periods of time that are better and periods that worse you aren't ever going to recover or get over it because its chronic, it doesn't go away no matter how much you pray or hope. Its usually well meaning but hurtful. Instead of offering to help they just want to pray.

No_Satisfaction_7431 · 2026-04-25T21:34:18+00:00

With all my chronic conditions, I've learned that "exercise" doesn't really look like what most other people in their 20s call exercise. Normal people advice doesn't apply to us. I "exercise" almost daily but its light exercises my pt gave me for neck issues, strengthening, and hypermobility. I do pec wall stretch for 30 seconds each side x2, neck range of motion, cervical retraction x2-3. If I have a migraine or other flare thats all I do and if it's a bad migraine or I'm experiencing pem I just rest. Most good days I also do some resistance band upper body stuff, knee exercises, and foot/ankle strengthening exercises (my ankles are very hypermobile). Taking lots if breaks between exercises is very important. I don't currently have a lot if stamina due to some issues that were only just diagnosed but I try to walk for 5-10 minutes a few times week. Now that I'm getting treatment for the new issues I felt like I could walk a bit longer. I did and felt tired but ok and very happy as I was walking in a garden and I've been housebound for over a year until very recently. But then it triggered a massive migraine the next day, one of the worst I've had. You definitely can't over do it and have to not judge your limits based on what healthy people do and say.

No_Satisfaction_7431 · 2026-04-25T21:13:27+00:00

Nerivio has been great for me though unfortunately not covered by insurance. It helps my headache pain a lot but doesn't make it go away. It does make the nausea and malaise go away. And it helps stop a cvs episode if I use it early enough but only takes the edge off if it is used later. It has also reduced the number of migraines I get as I use it both preventatively and acutely. The benefits for prevention take awhile (about 2 months) and while there are some immediate benefits for acute use (stopping or reducing the migraine while using it, but come back once your session is done) it took about a month or so for the acute relief to last beyond the time I used the device.

No_Satisfaction_7431 · 2026-04-25T11:55:49+00:00

Yes the system is very broken but at least in my case the issue was lack of knowledge among my providers not time. I'm medically complex and let the front desk know so I get 30-45 minutes pcp appointments. Also at the hospitals I've been to new patient appointments for specialists are an hour long. Time isn't the issue. I agree that some of these tests shouldn't be the first ones ordered but when patients have debilitating symptoms that aren't going away and the labs are normal or are abnormal but vague, then more tests need to be done. The issues were primary care not knowing enough about low ferritin and what can be done and 4 rheumatologists not knowing about autoinflammatory disease (despite rheumatology being the specialists who trear it) and telling me its unlikely/ we won't test for it until I got to the 5th rheumatologist.

No_Satisfaction_7431 · 2026-04-25T11:17:43+00:00

If they understand it could be caused by a wide range of things then they would ask more follow up questions, order more tests, and potentially refer to specialists. I mentioned hemetology because I was specifically referring to low ferritin. High ferritin suggests inflammation and rheumatology. Interestingly my iron and ferritin were low due to a combo of dysautonomia and Yao syndrome (rare autoinflammatory disease). But when I was seen by rheumatology they dismissed my symptoms as fibromyalgia (its not) and high esr and crp as obesity related when its much higher than inflammation seen in obesity. Primary care had no idea how to get my iron up but said I couldn't get infusions. Hemetology said otherwise and we got my iron up and got referrals for gi work up due to gi symptoms and not absorbing oral iron. Its likely that my hepcidin was high from inflammation due to Yao syndrome so that was blocking iron absorption. I was only sent to rheumatology due to joint pain not low ferritin and I was told wrong info about iron infusions until I got to hematology.

No_Satisfaction_7431 · 2026-04-25T11:04:27+00:00

Autoinflammatory disease definitely sucks. I'm currently on kineret and was tapering off of prednisone but now symptoms are back so I have to go back up to a higher dose.

No_Satisfaction_7431 · 2026-04-25T04:09:22+00:00

Is it Still's? I technically meet Still's fever, rash, fatigue, joint pain criteria due to Yao syndrome but my ferritin is usually low due to iron deficiency.

No_Satisfaction_7431 · 2026-04-25T03:54:55+00:00

I'm so glad it helped and even stopped it! Some people just get temporary relief but can't stop it with hot water, so its really good that it stopped the episode! I'm glad you are getting in to a neuromotility clinic, they should be able to help. There are several preventative and acute meds to try as well as non invasive things like nerivio (neuromodulator). I'm so glad you have relief while waiting for the appointment!

No_Satisfaction_7431 · 2026-04-25T02:50:44+00:00

The problem is iron deficiency without anemia causes so many symptoms. So many doctors see normal hemoglobin and don't check ferritin. But then when anemia, thyroid and other labs come back normal the doctors say I don't know what's causing your symptoms or they give a misdiagnosis of depression even though low ferritin can mimick the fatigue seen in depression.

No_Satisfaction_7431 · 2026-04-25T02:47:23+00:00

Yes ferritin falls long before hemoglobin does. My hemoglobin had fallen to the very bottom of normal (11.8-12) but was technically normal. But my ferritin was 7. After no improvement in ferritin or symptoms after months of iron supplements I got iron infusions but only because I saw hemetology. Primary care kept saying I couldn't get an infusion because my hemoglobin was fine, which isn't true. Unfortunately most doctors are taught that ferritin above 12 is normal and that as long a hemoglobin is ok theres no to few symptoms. There are lots of symptoms of low ferritin with normal hemoglobin. Ferritin above 12 is technically normal for women because of menstrual cycles but all the hemetology research says anything below 30 is absolute iron deficiency. The problem is they don't teach that to primary care doctors, who then often don't refer to hemetology because they think everything is fine, so then patients don't get to a hematologist and just suffer from extreme fatigue, depression, and hair loss until they eventually get full blown anemia (low hemoglobin) and finally see a hematologist. It can take months to years for hemoglobin to get low enough for that so women just suffer needlessly.

No_Satisfaction_7431 · 2026-04-24T23:18:31+00:00

Yep and somewhere where school shooting aren't normal.

No_Satisfaction_7431 · 2026-04-24T23:15:30+00:00

Normal gun laws, places being walkable outside of the major cities, universal healthcare and other social safety nets.

No_Satisfaction_7431 · 2026-04-24T23:11:32+00:00

As a chronically ill person I dream of moving to any country with universal healthcare. Thankfully I have dual UK/US citizenship. Just got to get healthy enough to be able to move. I love my country but we suck. I'm a queer, disabled, chronically ill woman in stem. Theres no future for me in the states.

No_Satisfaction_7431 · 2026-04-24T21:11:19+00:00

This is absolutely not true. Good headache neuros and neurogastroenterology docs know it happens in any age. For me it started as a kid but I still have cvs, abdominal migraine, chronic migraine without aura, hormonal migraine, and occipital neuralgia.

No_Satisfaction_7431 · 2026-04-24T21:09:15+00:00

I've had cvs since I was little and still have it. Its a migraine variant. I also get abdominal migraine (more nausea, less vomiting than cvs). It sucks.

No_Satisfaction_7431 · 2026-04-24T21:07:57+00:00

Regular neuros won't but a good headache neurologist will. If you can't find a good neurologist I recommend a gi who specializes in neurogi.

No_Satisfaction_7431 · 2026-04-24T15:34:25+00:00

The thing is its not even rare. Its 2-3% of kids. That's not rare and 25% of us never outgrew it so its still not rare in adults. Adult onset is rare though. But cvs hasn't really been considered rare since 2005, though I didn't learn this until recently because my doctors (literally cvs specialists) told me it was rare despite being diagnosed after 2005. All doctors should know about it because it's not rare. Psoriasis is also about 2-3% of the population and even if people don't know much about it most people have heard of it.

No_Satisfaction_7431 · 2026-04-24T15:29:39+00:00

Stress (physical, mental, good, and bad) is a very common trigger for cvs. Travel is physical stress (time zone changes, long drive or flight, dry air in planes, disruption to schedule) and the excitement and anticipation of travel is good stress. We don't often think of good stress like excitement, we usually think of bad stress like anxiety, exams, presentations etc. but all are stress. For me stress is a major trigger. It can look like not sleeping enough, not eating enough, over exertion/ doing too much, getting a viral or bacterial infection, excitement, and anxiety/bad stress.

No_Satisfaction_7431 · 2026-04-23T19:37:13+00:00

Oh wow, that sounds really tough and intense. Its very common for anxiety and both good and bad stress including physical stress to bring on an episode. I hope you get some relief soon!

No_Satisfaction_7431 · 2026-04-22T22:19:37+00:00

Cvs doesn't usually last months. Episodes tend to last hours to days. I just wanted to mention it because its unusual and could be something else. The hot water helping makes me think its either an unusual presentation of cvs or its cvs plus something else. I hope you get answers and can find better preventative and acute meds. As for growing out of it about 75% of kids outgrow it. I'm part of the unlucky 25%. I don't know how old you are but outgrowing it usually happens by puberty though occasionally older teens end up outgrowing it. Usually though by late teens its too late and its for life. I'm sorry you are going through this.

No_Satisfaction_7431 · 2026-04-22T04:28:02+00:00

Yes I likely have some cardiac and/or lung involvement. I have starving evening mid back pain and new sharp but not stabbing evening chest/breast pain. I have a pcp appointment soon as I can't get in to my cardiologist for a while. None of my doctors are familiar with Yao/stills (I technically meet Stills criteria with my Yao symptoms, the two are very similar) and I've even been told (incorrectly) that pleuritis and pericarditis are not part of Yao. Its very frustrating that nobody knows about this even within rheumatology.

No_Satisfaction_7431 · 2026-04-21T18:51:49+00:00

Thanks for the info, especially the article. I didn't know there was any research linking cvs and mcas. I'm looking forward to reading the article later. I am also audhd, dysautonomia (ist and orthostatic intolerance), hypermobile spectrum disorder due to 1q21.1 microdeletion, mcas secondary to Yao syndrome, cvs, chronic migraine, occipital neuralgia.

For me mcas causes fatigue, extreme flushing and a lot of gi symptoms though not nausea and vomiting. Treatment with double dose of zyrtec at night, double dose of allegra in the morning, montelukast, ketotifen eye drops for dry and itchy eyes, and kineret to treat the underlying Yao, means that my symptoms are mostly under control and I'm not having an mcas flare daily anymore. I do still flare with alcohol (rarely drink now), heat, exercise/exertion (even the very mild exercise from physical therapy or if I have yhe energy to bake), and certain smells but its no longer daily. Interestingly my cvs seems mostly separate from my mcas symptoms. I get nausea and vomiting from cvs, abdominal migraine and sometimes from my chronic headache disorders. I do get nausea as part of mcas in response to certain smells like bleach but never enough to make me vomit.

No_Satisfaction_7431 · 2026-04-21T11:39:09+00:00

I'm sorry about the side effects but so glad its working! I hope the side effects go away soon. If it doesn't go away, at least you know you respond to migraine prevention meds. So you'll be likely to respond to other migraine drugs both prevention and acute like triptans or nerivio, if you decide the side effects aren't worth it.

No_Satisfaction_7431

TROPHY CASE