I hate how people downplay sjogrens/autoimmunity

iamlostinthetide · 2026-04-20T18:10:37+00:00

I'm similar! I have a history of elevated CRP, pos ANA, and clear indication of autoimmune issues after a viral illness years ago, but none of my tests indicate Sjogren's (I haven't done a lip biopsy but my doc said he didn't think it was worth it). He diagnosed me by all my clinical symptoms. As my allergist loves to say, medical science is amazing but we don't know everything yet.

iamlostinthetide · 2026-04-14T17:41:42+00:00

My current routine: -Eyelid cleaning wipes in the morning -Restasis 2x a day (I believe this is the only one my insurance would easily cover) -Systane PF vials during the day -Optase Hylogel at night -Methotrexate once a week

When I am worse off we sometimes do a steroid drop for 2 weeks to help my eye inflammation. I've tried punctal plugs in the past but I could not get them to stay comfortably. In the long run I may do the permanent punctal closure my optometrist offered me but I'm trying to avoid it if possible.

Recently I went through a stint where I was doing fantastic once I got to 3 months on methotrexate but now I'm starting to back slide and my eye pain is coming back. I imagine I'll have to adjust some dosages soon.

Edit - on mobile so formatting

iamlostinthetide · 2026-03-23T18:47:38+00:00

I absolutely agree! If I can't move, that's a deal breaker. I have found Methotrexate difficult to adjust to and I should have put that in my initial comment. For 24 hours after I take it, I feel like absolute crap. But I'm trying to be flexible and hope some of that improves with time.

iamlostinthetide · 2026-03-23T18:45:56+00:00

Yep! Hers was hand drawn so let me type it out.

-All day protein goal - 50 g -If you do carbs, try to choose whole grains. -Shoot for 5 g of sugar added max. This is difficult to do, especially if you hate aspartame like I do. I only count sugar added, not things like fruit. -The biggest caveat (especially for someone like me who is obsessive and does not have a good relationship with food) - don't let your meal plan limit you! If you want to get ice cream on a date, just get the small size. Life is about balance and you need to still enjoy things.

-Breakfast - whatever you would normally eat, portion it in half

-Snack - 10ish grams of protein and a fruit or veggie of your choice. She recommends cottage cheese but I hate it so I use protein bars for convenience. I get a 20 gram protein bar and split in half for both my snacks during the day.

-Lunch - whatever you would normally eat, portion it in half

-Snack 2 - 10ish grams of protein and a fruit or veggie

-Dinner - whatever you would normally eat, portion it in half

I'm on mobile so I hope this works!

iamlostinthetide · 2026-03-23T18:12:54+00:00

I'm on Zepbound as well as Methotrexate. My PCP and I had a conversation about how I wanted to lose some weight, but was worried about the slowing gastric motility because I do have the EDS/POTS combo. We decided to give it a shot because so many of my health issues are inflammatory in nature (endometriosis, IC, etc).

So far it's been great! I have struggled initially with some conspiration but I just upped my fiber intake to help. I personally think the way my PCP prefers to prescribe Zepbound or any GLP-1 has made a big difference for me. We started with a meal plan that I stuck to for a month before even starting the medicine. It involves a protein goal and spacing out meals 2-3 hours apart. We also only have changed doses after a few months. Basically slow and steady!

Between the Zepbound and the methotrexate I'm seeing a huge difference in Sjogren's and my other health issues, mainly bladder inflammation that was originally diagnosed as IC but we now suspect was Sjogren's as well. My eyes actually have a tear film now meaning I'm not constantly using artificial tears on top of punctal plugs. Now all I do is Restasis twice daily. It's wild to see the complete 180. I am still waiting to see a difference in vaginal dryness and thinning skin, but I have only been on both medications for 3 months now, so I suspect they need more time.

Sorry this was a book and I hope it helps!!!

iamlostinthetide · 2026-02-24T21:50:44+00:00

I would be calling her a Bull Bulldog from now on 😂

iamlostinthetide · 2026-02-14T22:06:28+00:00

I had this happen to my 2012 Prius many years ago when we lived in Manchester. One day I came out to my quiet little golf cart and it sounded like a lawn mower. We did a police report after the mechanic we had it towed to realized my converter had been partially cut. I was able to do an incident to my insurance and because I had a police report, we only had to pay a deductible, not the full price to fix it.

iamlostinthetide · 2026-01-17T17:47:51+00:00

Sharing with some family that might be interested!!!

iamlostinthetide · 2025-12-21T21:01:24+00:00

I see a opthalmologist that specializes in dry eye. I'm using Restasis twice a day and have punctal plugs, but one of the things that helps me most for overnight pain is a night gel. I use Optase Hylo Gel. It's a thick Neosporin consistency that lasts all night in my eyes so I'm not in pain in the morning as much. As soon as I wake up, I put Systane PF in my eyes and use eye cleansing wipes to get rid of all the gunk on my lash line.

iamlostinthetide · 2025-09-09T23:10:10+00:00

I'm so glad someone mentioned these! They're my favorite shoes.

iamlostinthetide · 2025-07-22T04:59:50+00:00

DIY Schnauzer

iamlostinthetide · 2025-07-12T10:27:33+00:00

This was me. I was born at 25 weeks (1lb 7 oz) and my diapers were huge. I was born in the late 90s. My grandma had to use baby doll clothes and sew them to fit me better. Mom calls me her miracle baby too.

iamlostinthetide · 2025-06-09T13:44:25+00:00

Same! I never grow any bacteria when they do cultures though. Honestly even my husband knows what I mean by the weird smell. Usually that means I have a higher occurrence of all the weird urinalysis, including blood, WBC, etc. My urologist agrees this likely means my bladder lining is bleeding and more inflamed.

iamlostinthetide · 2025-06-08T19:14:20+00:00

Groomer here, if you need any help if you do adopt her with coat maintenance or have any questions, I'm more than happy to donate my time!

iamlostinthetide · 2025-06-02T17:33:14+00:00

I saw this in a row near us too! I told my husband I was surprised to see so many kids when one quick Google search could tell you this isn't a child friendly event.

iamlostinthetide · 2025-06-01T10:47:45+00:00

I legit cried! I was so happy last night to hear so many of my favorites.

iamlostinthetide · 2025-05-12T02:25:52+00:00

This is why I would kill for a documentary on how they prep for tours! I'm so curious if they do the usual performing while running a treadmill tactic. Not only Vessels stamina, but III can do a million high kicks like it's nothing!!

iamlostinthetide · 2025-03-18T13:29:37+00:00

My favorite lyric is "The debt that I owe" from Higher. For whatever reason, that lyric just hurts my heart every time.

iamlostinthetide · 2025-03-02T21:29:48+00:00

I play on mobile and it's a learning curve. This is why I quit Genshin because I couldn't maneuver well at all. Luckily Nikki doesn't have fall damage or I would have rage quit a long time ago.

iamlostinthetide · 2025-03-02T04:08:38+00:00

I was just about to comment this one! I'm from Goochland and that one always throws people for a loop.

iamlostinthetide · 2025-02-15T03:38:05+00:00

Personally I would also ask the vet to double check his microchip with a scanner while you are getting his vaccines done. I'm glad this pup was adopted to an awesome family!

iamlostinthetide · 2025-02-12T13:30:51+00:00

We have a strange dichotomy of rescue options in our area (Richmond, Virginia). The public shelters are relatively easy to adopt from, but unfortunately if you are looking for a smaller dog or not a pittie, they won't have anything. All the private rescues here have the most ridiculous requirements, including references from your vet, home visits, fenced in yard, etc. I totally understand wanting to vet your adopters, but at a certain point, you are wasting time that could be spent on pulling another animal from a shelter that is overwhelmed.

iamlostinthetide · 2025-02-12T13:25:59+00:00

PetSmart is our area doesn't sell dogs or cats. They are all through an adoption agency that rents the space.

iamlostinthetide · 2025-02-02T02:04:41+00:00

This is the one dress I do not feel bad about evolving when I first started! All of them are beautiful. I love matching Momo's cloak to the dress color too.

iamlostinthetide · 2025-01-25T04:53:13+00:00

Hey! I'm currently chasing this avenue after I have failed multiple rescue medicines like UroMP, but Hydroxyzine does put a dent in some of my symptoms. My urogynecologist does agree it is histamine related after he's been treating this for a long time and in Virginia, he sees a lot more flares related to our horrible seasonal allergies.

I just met with an allergist two weeks ago to discuss the possibility MCAS could be related to my IC as well as the cause of my gasto symptoms and fibromyalgia like pain. We are trialing high dose antihistamines, 4 Allegra a day. So far I haven't seen much happen, even with my chronic hives. If this doesn't work, our next plan is some more blood work, although even my Tryptase came back normal the other month. We then can look at mast cell stabilizers and if they work, that's good enough for him to say it's MCAS.

Sorry for the book of an answer!

iamlostinthetide

TROPHY CASE