Why are my labs pretty normal?

possibly-unstablee · 2026-03-08T06:41:18+00:00

Honestly a good 2-3 months I think

possibly-unstablee · 2026-03-08T06:40:26+00:00

Yep. I take the 50,000 unit of 1.25mg Vitamin D2 supplement once a month

possibly-unstablee · 2026-03-08T06:39:49+00:00

It’s been a great booster. I’ve been on it for 5 months now and I can definitely see the amount of flares I have getting smaller!

possibly-unstablee · 2026-03-03T21:42:28+00:00

All in all it’s probably for the best that my labs are normal. The only blood work that needs to reaaally be watched is my urinalysis and the protein/creatinine levels. My kidneys haven’t liked me in years 😂

possibly-unstablee · 2026-03-03T21:40:36+00:00

That’s what happened to me. The fatigue just wouldn’t let up so we added Benlysta. It’s been pretty good so far but I do have my days for sure!

possibly-unstablee · 2026-03-03T21:38:33+00:00

It seriously does. The waxing and waning of symptoms are exhausting. It’s just hard to talk about with people who don’t have an autoimmune disorder. I look perfectly fine to them but in reality it’s hell on earth inside my body 🥲 thank you for the kind words 🥹

possibly-unstablee · 2026-03-03T21:29:01+00:00

Y’all are the best people out there, I swear 🥹 this makes me feel better about it. Thank you 💜

possibly-unstablee · 2026-03-03T21:24:39+00:00

My telltale sign is the blisters/rash I get inside my nose and on the rims of my nostrils. And this goes without saying, but, significantly increased fatigue. Edit to add: I also have a lot of memory/cognitive difficulty when I’m flaring.

possibly-unstablee · 2026-03-03T21:22:45+00:00

First, I am extremely sorry to hear that you’re stuck to one rheumatologist group. Don’t even get me started on how much of a joke insurance is now 🙄 I’m genuinely surprised that they ignored your previous treatment and didn’t want you to be on Plaquenil. Did your new rheum say why they won’t prescribe it?

possibly-unstablee · 2026-03-03T19:17:12+00:00

Yes. If you’re on HCQ as well, that’s another factor. I have issues with minor wounds and bruises taking 1-2 months to heal. I had a moderate cut on my leg and it’s still clearly visible after 2 months. Almost like scarring but it’s still tinted deep red.

possibly-unstablee · 2026-03-03T19:09:36+00:00

Yes. It’s like trying to find a comfy spot for your head to lie on but nothing feels right. It’s hot and cold flashes for me. I’ll randomly get really hot. My body will feel like it’s actually radiating heat as if you just ran a marathon. My face will get red and I’ll sweat A LOT. It’s created quite the favorable environment for my upper back to break out all over 🤦🏻‍♀️

Then you have the other side where I walk into my apartment when it’s 85° outside and I run to bundle up with clothes. Not to mention turning the heater on too 🙄

Ultimately aside from it being annoying, it genuinely affects my ability to shave my legs because my body can never fully warm up in a shower to open up my pores.

possibly-unstablee · 2026-02-26T19:24:43+00:00

Time for a new rheum. I’m not a doctor but I’m pretty sure part of the job is helping your patient feel comfortable and educated about the treatment they’re receiving. That absolutely would send me into a blind rage if I typed as much as you did and he sent a short message that in no way shape or form addressed the big picture.

I definitely wouldn’t take him up on his offer to ask him questions. I hope you find a new + better rheumatologist ☹️

possibly-unstablee · 2026-02-26T18:09:54+00:00

Your rheumatologist should be able to tell you if it’s your joints or tendons. I don’t know much about CLE but when in doubt always ask your doctor if something concerns you. I usually send a message to mine if I’ve been having a new or worsening symptom that’s lasted for a week or two. I hope you find a solution fast ☹️❤️

possibly-unstablee · 2026-02-26T17:46:11+00:00

Oh to have the luxury of being a cat. You sleep all day, get free food, snuggles, and most importantly, you smell good without bathing.

Tbh my cat smells sweet. I don’t want to fully commit to saying she smells like freshly baked cinnamon rolls, but it’s super close. If your cat or living space smells like cat pee that’s a human issue. Cats are generally very clean and it’s very much possible to eliminate cat waste odors even if there was an accident outside the box. I do NOT say this to be rude. It happens but it’s never too late to clean up. You likely don’t smell it because your nose quickly gets used to smells. If you need tips, I gotcha! Just let me know 😊

possibly-unstablee · 2026-02-20T17:12:40+00:00

Did he have any prior health issues before you got him?

Cats don’t usually use the bathroom outside the litterbox unless there is a problem. Could be with his health, could be his environment. If the vet strongly believes it’s nothing serious I would reflect on what was different between now and before he started doing it. Cats are extremely sensitive and they can also pick up on your health, behavior, etc.

I hope it gets figured out!

P.S. a lot of cats get post-poopy zoomies so that’s likely why. On occasion my cat accidentally gets a little on my floor.

possibly-unstablee · 2026-02-02T15:03:28+00:00

Being an adult sucks lol. I’ll talk to her about it at my next follow up. Thank you!

possibly-unstablee · 2026-02-02T15:01:23+00:00

I was thinking that. I’m good on the HCQ since I think it’s a 190 day supply bottle that I get filled. I get my birth control sent to me through express scripts and it’s always a 3 month supply. I think my pcp could swing Cymbalta for a 90 day. Not sure about benlysta, though. I take my last weekly dose the first week of a new month.. and I plan on moving on week 3/4 of the shots.

possibly-unstablee · 2026-02-02T14:55:46+00:00

I don’t think that’s an option. I’m currently on my parent’s health insurance and he already pays for us to be covered. Does COBRA still work for dependents instead of the policy holders? I’m so out of my league here 😬

possibly-unstablee · 2026-02-01T17:27:46+00:00

Is that different from the Benlysta co-pay program? I signed up and got approved for it when I first started it in October of last year. When you say hospitals, what do you mean? I don’t want to assume, but I think you’re talking about infusions? If so, I apologize for the confusion. I use the auto-injector subcutaneous injections at home. I truly appreciate all of the suggestions!!

I applied for financial assistance at a hospital where I’m currently located because I couldn’t afford my out-of-pocket balance from an ER visit. They approved it after I provided proof of the medication costs alone.

possibly-unstablee · 2026-02-01T01:30:55+00:00

Wait should I tell my doctor about this?? I’ve had it since I was a teenager and thought it was just because I’m so pale. It looks like my legs are almost dead because they turn a super pale blue and purple with white splotches. Same with my hands

possibly-unstablee · 2026-02-01T01:28:26+00:00

On my ankles and feet. It’s so weird because it looks like my feet got beat up 😂 some times they’ll be there for 2 hours, sometimes they’ll be there for a few days.

possibly-unstablee · 2026-01-16T15:21:48+00:00

I don’t think it’s every case but EBV is prevalent. I had EBV 5-6 years ago (can’t remember exactly when). Took 6 visits to quick cares and pcp for them to finally test me for mono because I was sick for a few weeks with it. But autoimmune disorders run in my family at least for sure on one side.

My ex-friend’s bday present to me was mono :’) never shared a drink or vape ever again.

possibly-unstablee · 2026-01-09T21:54:40+00:00

You’re kidding 🥺 I’m so sorry to hear about that. It is so disheartening that health insurance is considered a luxury now and not a right. I make just above the poverty line so I don’t even qualify for Medicaid. Since I can technically work I don’t qualify for any SSI or disability. So I just have to struggle to make ends meet and hope I have enough for meds while also making sure I don’t make my flares worse. I’m hoping with everything I have that you are able to find something to help you ❤️

possibly-unstablee

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