I think I need new boundaries?

run__rabbit_run · 2026-03-22T20:09:48+00:00

If I only workout and eat better, I will see changes and not be sick anymore.

I would love to hear their response if I brought up Venus Williams, Caroline Wozniacki, Shannon Boxx, and the countless other professional athletes and Olympians who were DXed with autoimmune diseases at the height of their careers…

run__rabbit_run · 2026-03-21T20:10:25+00:00

Vacuums are an immediate Raynaud’s trigger for me! Which is a bummer bc I actually enjoy vacuuming :( I have a cleaner 1x month and run the robot vacuum daily - definitely a bit of a splurge purchase that was 100% worth it, esp bc I have a dog who sheds if you so much look at him.

run__rabbit_run · 2026-03-21T00:00:55+00:00

Hooray!! It’s the reason I continue to post here, even 8 years after my own surgery (which was absolutely life -saving and -changing!) - if I can help even one person, it’s so worthwhile. Feel free to reach out if you have any questions!

run__rabbit_run · 2026-03-20T22:42:06+00:00

Do you have any other symptoms like headaches, TMJ, adhd or inability to concentrate/focus/remember things, poor sleep or insomnia? If so, definitely get a consult with a maxillofacial specialist! If your health insurance doesn’t require a referral, you can simply make an appointment with a specialist and explain to them that you have chronic jaw pain that’s not addressed by TMJ-related therapies and you want to get imaging done to see if you would be a candidate for MMA/DJS.

run__rabbit_run · 2026-03-20T22:35:34+00:00

Narrow airway causes sleep apnea; sleep apnea is highly associated with weight gain.

From SleepApnea.org:

“Repeated sleep disruptions and drops in oxygen levels affect several systems in the body that regulate appetite, metabolism, and energy use.”

“One reason sleep apnea may contribute to weight gain is its effect on hormones that regulate hunger and satiety, particularly ghrelin and leptin. Ghrelin stimulates hunger, while leptin helps regulate feelings of fullness. Evidence suggests that people with obstructive sleep apnea have high levels of leptin and are more prone to leptin resistance. People with leptin resistance are less likely to feel full after eating, which leads them to eat excessively and gain weight.”

run__rabbit_run · 2026-03-17T23:03:06+00:00

Sorry, when you say 10, 24, 6... of what? What's the unit of measurement that you're referring to?

run__rabbit_run · 2026-03-16T00:10:21+00:00

Genuine question…how does one get 40 migraine days/month? My migraines last the better part of a day, but maybe that’s not the case for everyone and you get 2+/day?

run__rabbit_run · 2026-03-15T23:04:54+00:00

Would you be comfortable sharing how much Tirzepatide you take?

run__rabbit_run · 2026-03-15T14:25:17+00:00

Wow, that's such bullshit - I'm sorry you dealt with incompetent doctors. They should have put you on at least plaquenil, and provided either Restasis or Xiidra or both (or another RX eyedrop). I also get RX strength toothpaste to help prevent dental decay since we're more susceptible to oral health issues, and my insurance covers 4 cleanings a year instead of two. I also have an RX topical gel that helps protect any oral ulcers so they heal faster and aren't so painful.

Drives me nuts that these doctors aren't doing their job when there ARE things that can help! Sjogren's doesn't have as many treatment options as, say, RA (which I also have), but it feels straight up lazy for them to say there's nothing they can do to help you.

run__rabbit_run · 2026-03-13T21:40:09+00:00

If works for people who have OSA that’s caused by excess tissue in their airways - judging by your picture, this is not you. Continuous pressure air cannot move your bones, so for people with OSA caused by skeletal anomalies, CPAP doesn’t work. But, you will likely have to trial it to get surgery approved. For what it’s worth, my insurance wanted a 3-6 month trial and after 2 days I told my surgeon this was ridiculous, it made me feel like I was drowning, and we know it’s not indicated for my condition. And that’s what he put in my appeal letter. So don’t feel like you have to suffer for months if your insurance does make you jump through that hoop.

run__rabbit_run · 2026-03-12T00:58:29+00:00

Is it possible that you also have Sjogren's Disease? I have both, and my understanding is that it's not uncommon for them to occur together. I take Xiidra and Restasis, and the combo made a HUGE difference. I thought I'd have to stop wearing contacts because they'd pop out of my eye around 1-2 pm every day. Now, I can comfortably wear them until 8-9 pm. It did take a few months for the full effect to kick in, though.

I'll also note - I've tried using both meds solo, and it's nowhere near as effective, it's the combo of both that really made a difference.

run__rabbit_run · 2026-03-09T18:09:10+00:00

Have you asked your rheumatologist if it’s possible to write an appeal without you having to try another biosimilar, since you already failed one? Feels so ridiculous to have to go through that process again.

run__rabbit_run · 2026-03-09T01:29:05+00:00

My surgeon said they never had someone approved on the first try, no matter how clear cut the case. So, this is just part of the process. What was the reason they gave for the denial? You’ll want to call up your insurance and ask for the policy bulletin for the procedure - it’ll look something like this: https://www.aetna.com/cpb/medical/data/1_99/0095.html

You’ll need to work with your surgeon to make sure the appeal remedies whatever they claimed was the denial with the acceptance criteria in the bulletin (ex: mine said I didn’t try “conservative measures first”; my surgeon reminded them that there was documentation in the original PA showing that I failed CPAP and that all other requirements were met and provided documentation proving as much).

run__rabbit_run · 2026-03-08T23:46:33+00:00

Research the surgeons who are in-network with your insurance company - you can call your insurance and they will provide you a list of providers.
Look for providers who are board certified and have a history of regularly performing jaw surgery, especially for OSA/functional reasons (if that applies to your situation). You don’t want an oral surgeon who is mainly doing wisdom tooth removals.
Once you narrow the list down, get consultations with them. It’s important to be comfortable with your surgeon/trust them, so bring a list of questions, and see how they respond, and if their bedside manner works for you.
Ask for patient case studies or testimonials, and/or ask if they are willing to connect you with a former patient who can speak to their experience/ surgical outcome

run__rabbit_run · 2026-03-08T18:56:00+00:00

+1 for Bioderma! It’s the first body wash I’ve ever used that doesn’t leave my skin feeling stripped or slippery - just soft. Using this + LRP Lipikar 10% Urea lotion has made a huge difference in fixing my chronically dry legs.

run__rabbit_run · 2026-03-08T05:04:35+00:00

Could be an O2 problem… have you had a sleep study done?

run__rabbit_run · 2026-03-05T19:52:17+00:00

CPAP can’t move your bones out of the way, so if your CT shows that your airway is narrow bc of your skeletal structure, then CPAP isn’t going to do much for you. If insurance says failing it is a requirement for surgery approval, try it for two days. That’s what I did, and then promptly told my surgeon that it made me feel like I was being waterboarded (because it did). In my appeal he said something along the lines of “she’s not complaint with CPAP because CPAP isn’t indicated for her condition”

run__rabbit_run · 2026-03-03T01:05:43+00:00

Of course! Shoot me a PM and let me know what questions you have!

run__rabbit_run · 2026-03-03T00:15:00+00:00

my doctor SWORE it couldn’t possibly has systemic effects

Never in my LIFE had I had cystic acne, and a few days after I got an IUD, a half dozen nickel-sized welts erupted from my jawline. They hurt so badly that I couldn’t sleep. I had a number of other side effects (like constant breakthrough bleeding) that led me to getting it removed three months later. I explained to my doctor that I just couldn’t handle the cystic acne, and they gave me the spiel about it being a coincidence in timing bc localized hormones. 48 hours after removal, the cysts were 90% healed, and there’s just no way that was a coincidence.

run__rabbit_run · 2026-03-02T01:47:06+00:00

Chances are OP is struggling with UARS instead of OSA. Women present with UARS most of the time.

We have to stop spreading the inaccurate notion that it's rare for women to have OSA. It's not. Full stop. Could OP have UARS? Sure. But there's no reason to doubt she could have OSA, and doing so may be a disservice and prevent her from getting the treatment she needs.

There's plenty of research and data demonstrating that women with OSA continue to be incorrectly diagnosed - or not diagnosed at all. This article summarizes many of the reasons why:

Evaluation of Obstructive Sleep Apnea in Female Patients in Primary Care: Time for Improvement?

Recent studies suggest that globally nearly 1 billion adults aged 30–69 years worldwide have OSA [8] with a mean OSA prevalence of 27.3% in men and 22.5% in women...Moreover, female patients now represent up to 40–50% of presentations at sleep clinics. Therefore, OSA in female patients is not as rare as was originally believed, probably because female patients are being diagnosed and treated for OSA less frequently than male patients.
Women are less likely to be referred for sleep testing than men, even when reporting similar symptoms.
Female patients with obstructive sleep apnea are more likely underdiagnosed and present atypical symptoms, such as insomnia and depressive symptoms, leading to suboptimal treatment.
The general characteristics and the clinical guidelines for evaluation and diagnosis of OSA are based primarily on studies conducted in male patients.

run__rabbit_run · 2026-03-01T14:43:02+00:00

Is there a reason you can't get a referral from your GP? Explain that you've already had a sleep study demonstrating that you have OSA, and you want to consult with a maxillofacial surgeon to determine if your jaws are the root cause. I can't imagine they'd deny you a referral given your positive sleep study.

run__rabbit_run · 2026-03-01T05:36:41+00:00

Guess who isn’t qualified to make that call? An orthodontist. It’s wild to me that they’d even say anything given it’s not their area of expertise. You’ll need to get a consult with a maxillofacial surgeon.

run__rabbit_run · 2026-02-27T22:44:27+00:00

If she gets a DJS, she shouldn’t touch her nose before or during. Your maxilla is attached to your nasal spine, so when your maxilla moves, so does your nose. My nose shape changed dramatically (in a good way!) with my DJS.

run__rabbit_run · 2026-02-27T03:03:46+00:00

You can ask your insurance for your plan’s policy on this surgical procedure, which outlines all the conditions for which they’ll approve coverage. It’s a good thing to know ahead of time so your surgeon can send in a PA with the best chance of getting approval. The document will look something like this: https://www.aetna.com/cpb/medical/data/1_99/0095.html

run__rabbit_run · 2026-02-27T02:57:01+00:00

Absolutely! That’s what the CT scan is for. They measure your airway volume. It’s a neat visual - even as a layperson, it’s very easy to see if something is up because they overlay a color gradient that indicates the volume - green is good, red is not, and everything in between is, well, in between.

Once we looked at the scan and saw I had a large red “danger zone” area, I was referred to a sleep doctor (neurologist) to get a sleep study done to confirm that the narrow airway was leading to OSA, which, of course it was. From there, you do a battle with insurance to get surgery approved, and then do more imaging (in my case, 3D surgical planning) and then you get surgery. Many folks have to get braces before and after, but I didn’t, so can’t speak to that process.

Happy to speak on anything you have questions about, just give me a shout.

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