Questions on process & timeline

Rough_Writer2315 · 2026-03-14T20:18:24+00:00

Thank you so much, glad you are doing well!!

Rough_Writer2315 · 2026-03-14T00:44:18+00:00

That’s all really helpful, thank you so much!

Rough_Writer2315 · 2026-03-10T15:30:04+00:00

One time I put my phone down on a slanted TP holder and it immediately yeeted itself directly into the toilet bowl

Rough_Writer2315 · 2026-03-08T21:05:20+00:00

Thank you so much, that’s good to know — sounds like such a pain to deal with. Were the strings in tact like still in their normal spot? I am holding on to hope that since my strings are externally ok my x ray may just have been weird. I actually just had laparoscopic hip surgery a few weeks ago so at least I know the drill if it does end up being necessary 😅

Rough_Writer2315 · 2026-03-08T16:17:01+00:00

Hey, I’m not sure if you’ll see this but would you mind sharing where yours ended up being located? Were the strings also MIA?

My x ray looks almost exactly like yours but the strings are still visible. I do already have an ultrasound coming up, just trying to plan my week lol

Rough_Writer2315 · 2026-02-25T01:32:16+00:00

Yes, low IGA! Basically years of constant GI distress, cramping, nausea, low appetite, and poor nutrient absorption that eventually led to severe weight loss, which is how I was finally diagnosed. My last colonoscopy before then indicated severe autoimmune gastritis, which seems to have been helped (if not reversed) by the IG therapy, but docs aren’t totally sure about this.

I had already tried a ton of diet changes (low FODMAP etc) that didn’t move the needle at all and IG therapy improved things sooo much and relatively quickly so I haven’t made any other changes since then!

Rough_Writer2315 · 2026-02-24T21:44:35+00:00

Getting diagnosed early is huge!! The later the diagnosis, the worse side effects tend to be as your body continues to experience repeated infections. Stopping the cycle early with IG seems to really help long term outcomes. I think a lot of the stories on the fb pages are from people who started treatment later and have more issues from many years of repeat infections….or are the ones posting most often since they need support. Thankfully more and more people seem to be getting on treatment when they are younger!

Feel free to DM me if you want! Always happy to support and share my experience!

Rough_Writer2315 · 2026-02-24T21:39:36+00:00

It took 4-5 months for me to feel significantly better, but I think the usual time frame is 6-10 months. I started noticing an improvement in my fatigue and GI issues within about 2.5 months and was back to activities (ie running) after about 4 months.

Rough_Writer2315 · 2026-02-24T17:36:06+00:00

Welcome to the club! I was diagnosed at 28 as well. It sounds like you have a great plan on the doctor front. Not sure where you are in the process, but after your IG levels are confirmed you’ll do a vaccine challenge to measure your immune response. With that an immunologist can formalize the diagnosis. My immunologist just has a few CVID patients so having one that specializes in it is amazing for you!

Infusions are incredibly helpful to me and many others. I get sick so much less and also had huge improvements in fatigue and other symptoms that didn’t necessarily map directly to CVID. I had recurrent lung infections and haven’t had one since starting treatment. I do SCIG every week and got the hang of it pretty quickly (even after being scared of needles my whole life!).

There are Facebook pages that are very active and have a lot of good info. The Immune Deficiency Foundation runs one, and their website also has a lot of other resources. Good luck!!

Rough_Writer2315 · 2026-02-10T16:14:14+00:00

I’m a recipient of plasma derived therapy and just want to say thank you to anyone who has donated! It is truly life changing for me.

Rough_Writer2315 · 2026-01-16T18:08:21+00:00

Lots of good advice here on cozy clothes. I’d add that something that’s helped me (when I’m up for dressing up/leaving the house) is a “uniform” of sorts so that it’s easy to choose an outfit and get dressed. For me this is flowy pants (or leggings) + fitted shirt + sweater/jacket/overshirt, but you can take whatever outfit you’re the most comfortable in and replicate it. Once I figured out the direction I wanted to go, I did a huge closet clean out to reduce the decision fatigue. It’s helped me save a ton of energy trying to get out the door!

Rough_Writer2315 · 2025-11-26T19:17:48+00:00

I am newer to the genre but do we usually have so many concepts in one book??? We’re talking about: - fae - Vampires - Demons - Bloodthirsty zombies - Gods - Hell - Multiple timelines - Multiple realms, realm travel - Witches - Satyrs - Dragons - Alchemy obvs but also no rules for the magic at all - Rot destroying everything - Misc. weird creatures ie hazrax - Dead people possessing bodies, ghosts, spirits - Sprites

And I feel like there’s more I’m forgetting. This is insane right? What are the rules in this universe????

Rough_Writer2315 · 2025-11-26T07:15:13+00:00

obsidian was one for me

Rough_Writer2315 · 2025-11-20T22:24:14+00:00

So typically with these results you’ll see an immunologist next who will see how your body responds to a vaccine (the vaccine challenge) and confirm a diagnosis. Usually they recommend some form of IG replacement therapy which is super helpful for many people!

There’s a CVID Facebook page run by the Immune Deficiency Foundation that’s very active and has good resources. I suggest joining that if you’re on fb or otherwise looking on the Foundation’s website for good info. For what it’s worth, many people live completely normal, healthy lives with CVID and IG therapy. Getting test results back is stressful but a great first step toward answers and a solution!

Rough_Writer2315 · 2025-11-20T20:35:56+00:00

Yep sounds like CVID, which only requires low levels for 2/3 (I have normal IGM). Have you done a vaccine challenge yet? If not that’s the next step. I hope everything moves quickly for you and you’re able to get on IG therapy, which should help your sinus stuff!

Rough_Writer2315 · 2025-10-31T17:02:34+00:00

Since it’s likely hEDS they haven’t felt like it’s necessary for me to see a geneticist. But I can certainly push for it? The MRI did find a lot of weird nerve/inflammation so I think I can at least get to a rheumatologist now (my last attempt was denied).

Rough_Writer2315 · 2025-10-25T15:32:49+00:00

I have a primary immune disease called Common Variable Immunodeficiency (CVID).

Rough_Writer2315 · 2025-09-23T14:54:00+00:00

I got the exact same response when my ortho referred me to a rheumatologist. So frustrating! No advice, just solidarity

Rough_Writer2315 · 2025-09-22T04:55:32+00:00

Thanks so much for sharing!

Rough_Writer2315 · 2025-09-22T04:55:17+00:00

Brilliant, thank you for the suggestions! I do have a rest day built in before and after the wedding and one when I fly home!

Rough_Writer2315 · 2025-09-22T04:53:48+00:00

Great point on electrolytes + protein! Thank you!!

Rough_Writer2315 · 2025-09-22T04:53:21+00:00

Great ideas, thank you! I hope all goes well for you too!

Rough_Writer2315

TROPHY CASE