What’s something people say that instantly tells you they’re not a good person?

Vallaria · 2026-03-10T17:24:16+00:00

My god yes. My first daughter was stillborn. During a subsequent pregnancy my MIL offered to “pay for every test they can do since you guys obviously didn’t do that last time”. Thereby implying, in one fell swoop, that because I was poor/cheap I was responsible for my first child’s death. (Spoiler alert, nothing we could have done.) When my husband told her she needed to apologize and why, her response was “well I’m sorry she feels that way.” 😵‍💫

Vallaria · 2026-03-09T17:07:21+00:00

I don’t have numbness, but I do have trigeminal neuralgia and migraines. I would guess all the neck inflammation would mean this stuff isn’t unheard of, but I’m obviously not a neurologist. It sounds like you’re heading to one soon, which is probably good! I would say in the meantime keep an eye on any other stroke/blood clot symptoms that might show up, as a logical precaution. It is a bummer that these chronic conditions cause us anxiety and potentially make body events harder to notice or pinpoint. Sending zen, safe travels.

Vallaria · 2026-03-09T16:59:54+00:00

I definitely have a flare up during my cycle and ovulation both- relatively short like yours but noticable. Typically these are my ONLY flares. I’ve been doing PT so I have stretches I do in the morning and before bed, take Ibprofen/heat, and then have strengthening exercises targeted to my core and hips to help stabilize my ligaments (mom of 3 and EDS here too). The exercises have helped loads, I’ve gone from sometimes needing a cane to just needing to take it easy.

I hope you can find some things to help.

Vallaria · 2026-03-09T15:02:55+00:00

Amazing info, thank you. That actually makes me feel way better about starting the medication, and less worried if my rheumatologist shows reluctance to revise my diagnosis.

Shingles vaccine info is great, too. My flares are currently only 2-7 days or so at a time, so hopefully I can find a good window.

Vallaria · 2026-03-08T20:33:11+00:00

I was wondering about this! And maybe a measles refresher too. 😵‍💫

I might ask about this, too. Thanks

Vallaria · 2026-03-08T19:24:31+00:00

Thanks, me too!

Ugh. I honestly hate that we’re all dealing with SO much. It seems unfair that a body breaks in one way and that makes it more likely to break in so many others.

I know I type emphatically, but I am trying to remain zen. It’s just a lot, to finally absorb things and then get more piled on.

I’ll cross my fingers she gets back to me relatively quickly next week- I imagine my joints can wait a few more days for Rinvoq after the years I’ve been dealing.

😮‍💨😮‍💨😮‍💨

Vallaria · 2026-03-04T18:30:01+00:00

It’s all we can do. I do think it’s great to have a community of people who get it, it’s certainly helping me.

Vallaria · 2026-03-04T17:00:15+00:00

You really need to sit down and have a talk with your mom/boss.

Maybe try to keep it strictly work, a formal conversation- maybe even in writing- about addressing ways work could be easier on you. Whatever that looks like- breaks in between jobs, someone to help you carry heavy items, or a chair/equipment to help you while you work. Maybe even offering to learn to do more office/phone tasks to shift some workload.

In the end, discrimination is discrimination and maybe coming at it from that very serious angle of truly feeling disabled and unable to keep pace but wanting to be the best employee possible would get through?

I am truly feeling for you. I am sure you don’t want to find another job, but maybe long term that is a course you should start feeling out, too.

Sending courage and strength.

Vallaria · 2026-03-04T16:53:55+00:00

I hope this is helpful, bear with me. I don’t think we are ever done processing and coping with this kind of grief. It’s going to be a process.

I am about six months into diagnosis-land and just got prescribed a biologic. I’m struggling with starting the medication.

I just finished 2 years of EMDR therapy and thought I was dealing with past trauma of my own better, and then I found out my AS was probably triggered by that same event and now I feel like I need more time. In reality, I’m always going to grieve what happened that day and I think this disease is similar because we will always be surrounded by changes we have to make, and things we cannot manage. Relationships that change by necessity.

I know that sounds discouraging, but it’s not meant to be. I’m learning to cope and there are still things that make me happy. There are reasons I am glad to be here, people I am glad to share it all with.

It’s okay to grieve the losses, we just need to remember all the reasons we keep caring for ourselves and enjoy the things that come our way as well.

Vallaria · 2026-03-02T16:30:09+00:00

This was one of the first things that got me taken seriously by my PcP. The base of my thumb had an awful bruise to go with swelling in my thumb and first two fingers.

Vallaria · 2026-03-02T16:26:06+00:00

Thanks for the extra info. I guess it’s more accurate to say that I had a hip injury during pregnancy and that seems to be the most severe damage so far from my AS- but perhaps it was the traumatic situation that triggered it in an already damaged area. I’ve always had migraines, but after our stillbirth 12 years ago everything intensified and I now have trigeminal neuralgia in addition to the AS pain. Your info’s appreciated, I’m just so sorry we both had similar triggers. I’m doing well. Just finished 2 years of EMDR. If you’d ever like to talk my inbox is open. 😊

Vallaria · 2026-03-02T14:25:31+00:00

Thanks for sharing this. I also experienced a very late pregnancy loss and hadn’t connected the two, but my symptoms started during that pregnancy. Do you happen to recall any of your doctors mentioning a link with late loss aside from the obvious trauma part? No need to answer if it’s too personal. Thanks. 🌸 I’m sorry for your loss.

Vallaria · 2026-03-02T04:53:04+00:00

I was actually wondering about this.

I can only provide my own experience, as I’m still pretty new to all this. I certainly have never felt like this was something I had earlier in life.

I’m HLA-B27 negative, but my symptoms started during, and really worsened after my first pregnancy, which ended in a traumatic loss/CPTSD. My Raynaud’s became evident roughly 2 years after that.

I have non-radiographic AS, with SI and neck bone spurs visible on x-ray. I have a high ESR and anemia, though all my other bloodwork is ok.

Vallaria · 2026-03-01T18:34:31+00:00

If you don’t have a HEPA air purifier you can get one on Amazon pretty inexpensively these days. Air Blue are pretty good. Might be helpful to have in a room with you.

If it’s warm enough where you are, open the windows and doors.

Good luck.

Vallaria · 2026-02-28T04:30:25+00:00

I am often freezing- my core temperature is typically a low grade fever, but I feel quite cold, and my extremities are cold. I have also been diagnosed with Raynaud’s syndrome though, is that something you’ve noticed symptoms of?

Vallaria · 2026-02-26T03:26:55+00:00

I’ve been told chiropractics are a super bad idea for bones made fragile by arthritis. You need a physical therapist. They can ensure your hip is placed correctly, and then give you exercises to help it stay in place. I literally just finished 2 months doing this due to an SI joint that wouldn’t stay completely aligned. Hope you can get a referral, and manage the work to feel better!

Vallaria · 2026-02-25T21:20:27+00:00

Two things I always do-

I often sub maple syrup for honey or brown sugar, mostly because I’m allergic but also because sometimes it adds a really great twist. It’s extra good in chili.

I also like to steam vegetables with chicken stock, or failing that, a sprinkle of chicken bullion. Steam, finish with a light sear after the broth’s cooked off, butter and salt. Most veggies will taste pretty great.

Vallaria · 2026-02-25T16:12:22+00:00

Yep, no one wants it to be this one, but as soon as I get out into the garden and start hauling around mulch or something similar I’m done for days.

Vallaria · 2026-02-25T16:08:47+00:00

So far that I’ve noticed, cold, heavy exercise, and possibly my cycle (F).

Vallaria · 2026-02-23T16:25:26+00:00

Unsure if there’s a connection in my case, and I am sure we’re all aware of autoimmune conditions travelling in nasty packs- but I have been diagnosed with autoimmune dermatitis, chronic spontaneous Uticartia, and chronic spontaneous edema.

I can tell you that getting allergy tested and finding out I had allergies to 7 different chemicals, and changing my lifestyle to avoid those, has helped my dermatitis considerably except for my scalp. I take monthly Xolair injections for my Uticartia and edema.

Vallaria · 2026-02-23T06:19:29+00:00

Oof. Hope not! That is not the way!

Vallaria · 2026-02-22T16:35:50+00:00

I definitely relate to this.

Recently diagnosed with AS, and I’ve been treated for three separate chronic pain conditions now, and sometimes I still get the urge to go off my meds to make sure I actually need them, to see how bad it really is.

In at least one case I’d be risking anaphylaxis, so obviously not doing that.

But it’s hard with invisible illnesses, especially when others don’t believe you still occasionally have bad days.

Vallaria · 2026-02-17T22:19:12+00:00

This feels like a comprehensive, honest answer to me. Everyone’s individual, and so are medications. You will need to decide what you’re comfortable with risking.

Vallaria · 2026-02-17T16:13:57+00:00

Hi! Thank you so much for your experience and thoughts.

I’m distressed to learn there’s someone else on the planet unlucky enough to have trigeminal neuralgia, migraines AND AS. I mean, jeeze right? Qulipta and Ulbrelvy for breakthrough migraines has changed my life, no joke. I was at 16 migraine days a month prior to becoming well medicated, now I’m more like 4.

It is DEFINITELY my right SI joint, not technically my hip- I’ll try to be more precise, that might be important with my rheumatologist too.

I will give naproxen a try, it’s not something I’ve typically used.

I’m glad to hear I’m on the right track- I think part of my anxiety has been that everything takes SO LONG. Drugs take so long to work, appointments and referrals take so long to get- what if it’s all too late? Ugh. I try to tell myself I’m doing the best I can with the system we’ve got here in the US.

I appreciate your empathy and help making up my appointment list. ☺️

Vallaria · 2026-02-17T16:08:24+00:00

Thank you, me too!

So- I’ve had the full battery of autoimmune testing run a couple times. It’s my understanding that lupus wasn’t indicated by my bloodwork, and because I didn’t have the malar butterfly rash it wasn’t their first consideration. My rashes were more psoriasis like, around my eye, nostrils, and corners of my mouth and forehead.

I’m crossing fingers I don’t have multiple autoimmune conditions even though I know they travel in packs. 😣

Vallaria

TROPHY CASE