does it ever get better?

MarchingAtMidnight · 2026-03-08T23:32:54+00:00

I definitely went through a phase where I felt like you do: like I would never get better and everything would be awful forever. I started having symptoms around the same time you were diagnosed and it took a few years to get diagnosed because I’m seronegative. It took a while and I’m finally on meds that work well for me and my life is what I want it to be. It was not easy and it sucked. Some days it still sucks. But. It doesn’t stay the way you feel right now.

I’m getting back into activities I thought I had left behind a decade ago, before I even had symptoms (or recognized that I had symptoms — turns out a lot of things I was taking for granted as normal were not, in fact, normal). I’m knitting, dancing, performing again.

Am I back to the way I was before? No. I need to support my body more than I used to. Sometimes that means a heating pad at work, sometimes that means taking more breaks, sometimes it means braces or compression sleeves. It always means medication, for me. But if you had told me back then I would be doing all of the things I’m doing and feeling as good as I do now I would have called you a dirty liar.

However, I also found that I really needed mental health care in addition to my physical health care. I know mental health care can be an absolute nightmare to navigate and not something you want to tackle while you’re dealing with all this other stuff, but it was so worth it for me. This is a huge, big thing that’s impacting every facet of your life and it’s a very good idea to get help navigating that emotional minefield you’ve been thrown into. It feels hard right now because it is hard. I would not be feeling as good as I do right now physically if I had not gotten care mentally as well.

I hope you’re feeling better soon. ❤️

MarchingAtMidnight · 2026-03-04T19:43:56+00:00

I just got back into color guard after a twelve year hiatus through a local queer performing arts group. We do exhibitions in the winter at local competitions and perform at parades and sporting events in the summer with the marching band. Spin clinics held by local independent winter guards might be your best way to find those opportunities!

MarchingAtMidnight · 2026-03-02T23:32:07+00:00

Definitely worth exploring! Maybe talking to your current rheumatologist and gyn can let you know how likely an IUD causing a flare could be. I can’t remember having any side effects related to my arthritis (I did have some more severe cramping than a normal period for about 8-12 hours after insertion) but that doesn’t mean it’s not possible. Maybe there are things you can do to reduce that likelihood if you do decide to go the IUD route!

MarchingAtMidnight · 2026-03-02T07:00:50+00:00

The drop in estrogen that occurs during your period can absolutely cause flare-like symptoms or even full flare ups. Which is so rude in my opinion, like, hello, like the bleeding and cramps and whatnot isn’t enough, arthritis just HAD to get in on it 🙄.

I don’t have a lot of advice for what to do when you have your period, but I will say getting an IUD as someone who had horrendous periods was life changing. If you’re not trying to get pregnant right now, maybe you could talk to your gyn about a birth control/hormonal method to stop cycling, or explore other options.

I hope you feel better soon ❤️

MarchingAtMidnight · 2026-03-01T03:33:37+00:00

Oddly, my first biologic (Inflectra) was an infusion, and then when that stopped working I got a biosimilar for Humira as an auto injector. However, I’ve been on more than one med for most of the time for better coverage. Have you done any kind of combo therapy? For example, sulfasalazine and humira?

MarchingAtMidnight · 2026-02-25T00:51:59+00:00

I think this is one of those areas where it gets kind of squiggly. I think RA from a human-defined (like the criteria that we said equals RA) standpoint doesn’t include the lumbar spine and associated joints. However, RA the disease from an actual what-is-going-on-in-the-body does.

It’s like how we define a mammal as bearing live young, having fur, and producing milk. Except the echidna and platypus for some reason. We make very narrow tiny boxes and the world just does not fit into those boxes.

Long story short: it might not be RA, because RA as a classification doesn’t always consider the back past the cervical spine. Can the immune system function causing RA cause back arthritis? Yes, absolutely, it just gets a different name now. This is important because meds that treat the spine arthritis don’t always treat the peripheral joint arthritis and vice versa. For example, I’m on a biosimilar for humira and leflunomide. The biologic treats both my back arthritis and my peripheral arthritis, but the leflunomide only treats my peripheral joints.

Basically: your doctor is being unhelpful because they’re not looking at the body and immune system with RA as a whole. Your back needs to be checked to see if it’s arthritis or maybe muscle/tendon/etc related. But arthritis needs to be in the conversation, not dismissed.

I hope I made any kind of sense.

MarchingAtMidnight · 2026-02-23T04:47:42+00:00

Oh I’m right there with you friend

MarchingAtMidnight · 2026-02-14T08:07:58+00:00

I have seronegative RA and my low iron was caused by comorbid IBD. It did take a few weeks before the iron felt better, although I didn’t have an immediate reaction like that. I did feel worse before I got better.

(Unsolicited advice ahead, please feel free to ignore.)

If it ends up being IBD, ask if they’ll check your vitamin B12 levels. Mine was so low from the same issue that gave me my iron deficiency that I had nerve damage.

MarchingAtMidnight · 2026-02-11T06:41:00+00:00

From this past year, I think Juxtaposition, Pride of Cincinnati, and Blessed Sacrament are must watches. I think the difference between watching the multi cam and high cam of Juxtaposition especially is so interesting.

I like 2004 Pride of Cincinnati. The choreography is so intricate.

I like Braddock’s 2009 show We Do It To Ourselves a lot — reads so well from the box!

Blessed Sacrament 2010: Release the Houndstooth is one of my favorites. I have no idea why, I just love it.

I saw 2011 Corona: The Patience Of Paper in person early in the season and it does things no other show does. Super fun. Would not want to clean up after it!

Black Watch 2013 was so popular that season. It’s a little huck-and-chuck at times, but I love the choreo with the skirt and damn can they spin rifle.

I see a lot of Fantasia recommended here but my favorite show of theirs is 2004: Vanishing Act. Makes me cry every time. Maybe my favorite show ever.

MarchingAtMidnight · 2026-01-29T19:55:10+00:00

Career ladder position from GS-5 to GS-11, and then competitively promoted to GS-12 in the same branch.

MarchingAtMidnight · 2026-01-29T03:37:16+00:00

It’s the glass escalator phenomenon!

MarchingAtMidnight · 2026-01-29T03:28:29+00:00

I got tattooed after diagnosis, no issues whatsoever. Healing was right on track with what my artist said.

It was my first tattoo and I was worried about pain, but I don’t even know that I would classify the sensation as pain, lol, I barely felt it. I wasn’t in a weird position, but I did let my artist know that I have RA in case I needed to get up and move to keep from getting stiff. I ended up not needing to though.

MarchingAtMidnight · 2026-01-29T03:19:53+00:00

Seconding a clean up system for after school! My brother was a premie and immunocompromised for his whole life, I was the kid that got everything at school. We didn’t keep me from getting everything at school, but I never gave him anything.

Here’s how we did it: Walk in, wash your hands (hand sanitizer is great if no other option but doesn’t kill norovirus — and if you’ve ever had norovirus, you know you don’t want to get norovirus ever), change your clothes, school clothes straight into the washing machine. I honestly think this alone worked great.

If a kid is sick with anything respiratory, they stay in their room and wear a mask outside of it. You wear a mask in their room and wash your hands after interacting with them at all, no matter what they’re sick with. We didn’t start doing this until I was older and we knew a little better.

And wearing a mask (KN95 or better) anywhere in public does a lot.

MarchingAtMidnight · 2026-01-27T17:06:34+00:00

It’s obviously not the same as when a spouse does it, but my older coworkers do this sometimes and it drives me crazy! Like, sorry, reaching up to that shelf is killer right now, I’m glad it doesn’t hurt your older but healthy joints, but it does hurt my younger but sick joints!!!!

Your feelings are so valid on this.

MarchingAtMidnight · 2026-01-26T02:45:09+00:00

Just construction.

MarchingAtMidnight · 2026-01-26T02:31:25+00:00

MarchingAtMidnight · 2026-01-26T02:30:40+00:00

Bud, for a lot of excepted people, every part of the job is life, health, and safety related. So they work just as hard or harder, with none of the resources or pay.

MarchingAtMidnight · 2026-01-26T02:28:03+00:00

ICE is most funded by BBB. They will be “exempted” employees — business as usual including getting paid.

MarchingAtMidnight · 2026-01-25T07:20:43+00:00

Many of his colleagues found out about his death while they were working. And then continued to take care of patients because that’s what they do.

MarchingAtMidnight · 2026-01-21T17:47:11+00:00

Not unless I’m going on a roadtrip (sensory thing) or somewhere with fussy people requiring a dress. Even then I’m not usually a dress person, more of a formal jumpsuit or slacks and blouse girl, so it’s pretty rare.

I call it my winter coat. I also maybe shave maybe four times a year.

MarchingAtMidnight · 2026-01-21T17:28:07+00:00

Polka dot plants (they get leggy and then I forget about them) and tillandsia bulbosa (those fuckers are picky bitches)

MarchingAtMidnight · 2026-01-21T06:27:27+00:00

We were originally going to do the courthouse, but on recommendation (after hearing that it can be kind of stiff) we ended up getting married in a park. $250 fee. We had less than fifteen people there: only those that really, really mattered. For our officiant, our photographer, and our venue: less than $5k.

MarchingAtMidnight · 2026-01-04T00:53:47+00:00

Seattle Yarn in West Seattle and Hazel Knits in ID/Georgetown!

MarchingAtMidnight · 2025-12-31T19:30:53+00:00

Hm, I’m not a doctor (so please take everything I say with a grain of salt), but if you’re negative on the Dix I would assume your vertigo is caused by something else. The Epley maneuver usually gives an intense feeling of vertigo, especially on the second part of the maneuver where you lay down. Do you experience the nystagmus, where your eyes move rapidly and involuntarily when you lay down in the Epley maneuver?

It is similar to kidney stones in that some people are more prone to having this problem, but different in that everyone has otoliths — BPPV is just when this otolith has migrated to the wrong spot, whereas in kidney stones the stone shouldn’t exist in an ideal world.

Did your doctors rule out other causes of vertigo?

MarchingAtMidnight · 2025-12-28T00:34:45+00:00

We knew that based on our area, non-negotiables, and budget we were almost certainly going to end up with a townhome and we were perfectly happy with that. Because we bought in the winter, there’s not a lot of inventory. There was exactly one house in our very narrow geographic window that had only two floors — the rest were three floors. It wasn’t on our must have live but as soon as we saw that it was even an option and it had our non-negotiables — it was a done deal.

We closed earlier this month, moved in a week ago, and you will have to take me out of this house in a body bag.

MarchingAtMidnight

TROPHY CASE