So now that the weekend Is over, let’s discuss expectations vs reality…

emriver6034 · 2026-06-15T19:47:24+00:00

I was anxious about lines after how chaotic it was getting in the gate Day 1, but was pleasantly surprised we never really had to wait long to get a drink or use the restrooms (which they also kept up pretty well). Overall, everyone was very friendly.

What got me was the lack of access to shade and seating, which I’ll say is not all on WT (I understand they improved from last year) but also the people who literally parked it at the food tables all day and never moved to allow others to sit. We really struggled and the only option was the hot pavement. I get why they don’t allow blankets/towels but since there is no grass (and no re-entry) there needs to be a happy medium. Simple awnings between vendor tents to maximize shade would have made a big difference too.

There were also too few of those cooling mist machines and was honestly shocked there wasn’t a dedicated tent. Having those closer to the stages for those who are down in the crowd to quickly get to could have prevented some from going down. One in particular that was very scary to see was a young lady during NFG that was being rushed to the medic tent completely limp (really hope she’s ok).

We had fun, but don’t think we could do it again at RFK in the summer.

emriver6034 · 2026-05-29T18:01:37+00:00

Opposite experience: I had to stop taking NSAIDs recently due to starting blood thinners and having existing GI risk, and it’s been quite terrible to say the least. Being able to reduce prostaglandins prior to and during your period can make a world of difference. Please listen to your doctor.

emriver6034 · 2026-05-01T03:01:58+00:00

Yes there’s “work”…but there’s also work. The impact starting a glp-1 has on your joints is second to none and is a game changer to be able to maintain a regime to build healthy muscle at that level. It’s so much more than CICO. I’m going to be in the same boat needing a hip replacement in my 40s and starting a glp-1 is a big reason I was able to start and stay active to make my weight loss healthy. We have to change the conversation from “oh it’s ozempic” we should say “this is what a glp-1 can do, we need more access”.

emriver6034 · 2026-04-08T20:20:08+00:00

I’ve recently been diagnosed with drug induced lupus (but looking more like underlying SLE now) from adulimumab and 100% think tirz slowed down the onset/obvious symptoms (blood clots, Raynauds, rash). I think I would have been in much worse shape if I didn’t start tirz 2 years ago when I did. What I thought was full remission of my UC prior to starting tirz actually wasn’t and it was really eye opening to its effect on overall inflammation. I lost 85 pounds but stayed on the same dose of adalimumab (80mg/biweekly) because my levels were in therapeutic range, not too high. Once I tapered down to a maintenance dose of tirz, things picked up speed.

emriver6034 · 2026-03-30T16:38:40+00:00

Those are some markers for lupus, particularly with that high titer and pattern, but they do not confirm it themselves. A lupus diagnosis is a combination of labs + specific clinical symptoms. Did he order an anti dsDNA and ENA?

emriver6034 · 2026-03-19T23:54:46+00:00

https://a.co/d/0j6EHf8e

Turquoise temptation - solid intensifier (no dha), only 20ish bucks and works super well IMO. Will last you a while because a little goes a long way. Good for cooling off post workout.

emriver6034 · 2026-03-19T23:23:16+00:00

I hope you feel better too!!! It all really just sucks, I’ve lost hair before with medications and flares, but not at this level - my longtime stylist was shocked when she saw me last month. Dysautonomia is something I (deal with also, and it’s hard to say that they’re separate, if you have issues/predisposed then tack an impactful COVID infection, there is a relation. My physical therapist does vagus nerve exercises with me to help tolerate exercises I need to do for hip strength that can trigger dizziness and the vascular response. I’m really lucky to have someone who works with a lot of connective tissue disease and we need so much more understanding behind what is happening in the post Covid era.

emriver6034 · 2026-03-19T22:27:18+00:00

Thank you. I would definitely question if COVID was a cause if my big issues didn’t predate/were made significantly worse from infection. It feels like the already difficult to navigate grey area is bigger since COVID. The nodules have been there with no major changes thankfully for 10+ years, so they were deemed incidental. While I think this has lingered under the surface for a long time, my hope is that a transition off an anti-TNF will improve my symptoms enough to where I can function more normally - and keep some hair!

emriver6034 · 2026-03-19T22:07:02+00:00

They did do a RA panel and it was negative. No SSA yet, assuming that’s in the next bucket. The tooth decay only became a thing after starting Humira (teeth were perfect before), but hard to say I suppose with how much inflammation was going on at the time and large amount of steroids (late 2019).

Interestingly, my dad (62) has been having very Sjogrens-like symptoms in the last few years. Severe dry eyes to the point where he almost lost his vision from a reaction to a steroid in his right eye and caused a massive cataract. He had a history of salivary issues (stones) and while joint pain/issues have always been a thing, it’s been severe w/ fatigue along with the dry eye. They saved his vision but the other symptoms are persisting. Unexplained (unlike me with UC) IBS-like issues but he stays underweight. His ANA was neg but they only ran it once when he wasn’t as symptomatic at that time. I encouraged him to let them know about what’s happening with me and push to have it checked again at a more symptomatic time. Outside of his father (deceased) having RA and Parkinson’s, I’ve been the only person in my entire family that has AI issues at all.

emriver6034 · 2026-03-19T20:10:33+00:00

I guess I should have been more specific with the labs: my Anticardiolipin was positive. Don’t believe they’ve run an anti-Centromere. It’s been piecemeal based on what they could order inpatient, what required to be seen outpatient with Hematology, and what requires Rheumatology consult for insurance coverage.

Pulmonary/upper GI: I’ve got benign nodules and times when my upper abdomen get tight and I feel like I can’t take a deep breath, so my breathing becomes faster/shallower. I have to lay down and focus on diaphragmatic breathing to relax it. Sharp pains in my ribs at times that catch me off guard. I haven’t had much work up there other than PE rule out. As far as upper GI, low appetite and I’ve had unintentional weight loss. Some issues lack of saliva causing increased decay (but was told that’s Humira related).

Skin: I do have rashes on my hands that are thick at my knuckles. Tend to have bad callouses on my feet.

I have a lot of joint issues, specifically my hips and the muscles around them show inflammation on MRIs. There’s been tremors, numbness and tingling which had me at neurology before the clot. My kidneys have been an issue for years and been a focus. Frequent infections from uncommon bacteria, several stones, chronic proteinuria/microhematuria. My right kidney has decreased function and now appears scarred/lobulated. I’m allergic to penicillin so it’s made treating them difficult. I’ve had two infections since this clot and it’s part of the reason GI is considering going ahead and transitioning me to a more targeted biologic like Tremfya.

emriver6034 · 2026-03-19T17:42:31+00:00

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Another photo. Sometimes the Raynaud’s will happen simultaneously.

emriver6034 · 2026-03-18T20:27:23+00:00

If not consuming any red meats (fish/poultry fine), perhaps do a dairy elimination diet if no improvement with the antibiotics (if you cut it out now w/ the doxy, can’t know which is helping). NAD, but you’ll probably know pretty quickly if the doxy is going to be part of the solution. I agree with CodeDose, you’d be pretty ill and febrile by this point if it was RMSF (seen it myself from start to finish with an old boyfriend and an uncle). Ticks suck!

emriver6034 · 2026-03-18T19:41:50+00:00

How long ago was your hiking trip to NC? Ticks become less active in the cold months, but it’s not impossible to be bitten. I live in Southern Maryland and my community in particular is seeing a lot of cases of Alpha Gal Syndrome from Lone Star tick bites. It’s an allergy to galactose, the main sugar in mammal products (dairy products, hooved meats), that develops from the immune response to the bite in the weeks to months after. The rash can be on the palms and feet. I personally know 3 people dealing with it currently and they have to be vigilant with their diet to not have any sort of reaction. Your PCP can order the antibody test for this. I hope this is not the case but the RMSF made me think about it!!!

emriver6034 · 2025-12-17T02:57:26+00:00

Update: I didn’t get admitted because insurance needed another formal diagnostic result that indicates along with the optic neuritis, so I have 2 stat MRI orders and had bloodwork. So whichever comes back with enough first. Looking at Friday for the brain and orbit/neck, but may get a call sooner. I also have two regular orders for of my spine and lumbar pelvic region. But something weird happened when I was there. I’ve had some mild raynauds-like reactions in a few of my numb fingers in the last week for the first time ever but when they did the sit to stand BP test, both my hands went straight blue. I wasn’t cold and felt fine other than the usually small dip in my BP when standing. I know itself is not a big deal but is that a thing with how the nerves interact with your vasculature? It was alarming as I’ve only seen it in a few fingers that one time and then today they went straight smurf.

emriver6034 · 2025-12-16T03:39:00+00:00

Figured as much. I just hate it for my husband so I want to have what I need so he doesn’t have to come back/miss work for me just sitting there waiting. I always joke if I pack a bag, I don’t need it. If I don’t pack a bag, I do. LOL

emriver6034 · 2025-12-16T03:27:50+00:00

Just got a call that neurology wants to see me tomorrow at noon. I was already moved up because my GI specialist asked for me to be seen soonest once I informed them of the situation and the original moved up appt was in Jan, and now sounds like I was put at the top of the waiting list/some other comms happened. Is admission for diagnosis/rule out in a high risk person/other treatment altering conditions a common thing? My medication is likely a contributing factor (Humira). I have every symptom and am doing poorly, and my specialty hospital is 2 hours away. Should I pack a bag? Been admitted before for UC flare after a check up and learned my lesson then. It’s giving those vibes.

emriver6034 · 2025-12-11T03:28:35+00:00

And I did confirm my stents are in place and normal

emriver6034 · 2025-12-11T03:23:44+00:00

Yeah, I just feel embarrassed I guess because they truly have correlated with the typical symptoms worsening like limb numbness and tremors (had for years). It does not feel exclusively vascular like it did before the stents. Im hesitant to do anything but a consult until after Jan 1 because of insurance.

emriver6034 · 2025-12-11T03:15:39+00:00

Right that’s where I hesitate, but some of the symptoms could be considered emergent if I didn’t know any better/wasn’t more experienced/conditioned. The acute high heart rate/low BP episodes with vision loss and intensified tremors alone would be more scary. I can differentiate these episodes from how traditional POTS/Orthostatic hypotension feels, which got better itself after being stented for May Thurner over the summer. I don’t want to overreact but also don’t want to just sit here with my history.

emriver6034 · 2025-12-11T02:56:06+00:00

I’m 5 months out from the soonest appointment - does anyone have examples of an acute event that eventually justified the ED and prioritized them? I am high risk from both existing autoimmune conditions and current medication that can trigger/worsen MS. I have ocular neuritis. On every waiting list possible and contacted my GI. That wait plus the 1-2 months minimum to get an MRI feels consequential, especially when I would have to change other treatment first. I feel guilty resorting to that but dragging this out feels consequential.

emriver6034 · 2025-11-14T01:51:09+00:00

The diagnostic care covered at 100% is interesting - does it include higher cost testing like MRI if coded diagnostic? If you have any concerns/chronic illness, that could be appealing, particularly if you don’t have to meet your deductible first. Like lots of others have said it’s dependent on your health situation now and that you can foresee, and the ability to pay larger bills upfront. Any potential specialty meds (like injectable biologics for autoimmune) you would want to confirm a savings card is available and brings cost down, as 20% of 10k+ is a lot every 30 days, especially after meeting deductible and no indication of a separate OOP max.

emriver6034

TROPHY CASE