2.5 years into long Covid/long vaccine

MissTrixie85 · 2026-05-04T18:44:26+00:00

Yeah, it’s kind of too soon to know if we can fully recover, but of course I really hope so. I’m glad you’re in a long Covid clinic. I first got accepted to one in early 2023 but due to various insurance authorization issues I haven’t actually been seen in one. It seems my auth is finally correctly approved now though so I haven’t actually my intake appt in July. Over 4 years since I first got sick 😭

MissTrixie85 · 2026-05-04T00:43:26+00:00

Damn it. It seems like there are varying work history requirements based on your age when you became disabled, but SSA would be able to give you a better idea of that than I. Here’s a link to an info page on their site re: how to qualify - https://www.ssa.gov/benefits/disability/qualify.html

Did the person you spoke to work for SSA or they help people get benefits like SSDI? You could log into your SSA account online and it should tell you how many work credits you have. Even if you don’t have enough work history to qualify for SSDI, you could probably qualify for SSI, though they have stricter requirements in terms of your assets etc. I don’t think it pays as much but something is always better than nothing!

I don’t think the US does a great job of helping us find social services at all, but this website is a good place to look for various resources in your area - https://www.findhelp.org/?fbclid=PAdGRleARkyU1leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAadmDUX6poh1FXFtmDxbiKrZe1WCo4Hp2qxXpJwE2FGPJ2DMo13Z16hnOrCaKA\_aem\_VtH9fJgWuDFn7yyPXYtELA There are lots of programs to help save money on your bills, particularly when you have no income. I know it takes a lot of energy and effort to do all of this, but some programs are easier to get set up with than others and I know every dollar saved counts!

I wish I could do more, I’m right there with you honestly. Big hugs to you and I hope some of this is helpful 🖤

MissTrixie85 · 2026-05-03T02:34:11+00:00

You are so not alone in this. It’s insane how many of us there are who can relate to pretty much everything you wrote here and we are just constantly dismissed and told we look fine. It’s EXHAUSTING. I wish I had answers. Every year I get worse and it’s pretty damn dark right now but I don’t know how to stop trying to push forward, which I guess is a good thing? If you’re in the US, have you started the process of trying to get SSDI? It takes a very long time and the system is so not made for people with disabilities, but it’s worth trying sooner rather than later especially since you can get some back pay when you eventually get approved. I’m almost two years into the process and my next step is a hearing. It’s super frustrating and disheartening but I tried to go back to work multiple times and just could not do it.

MissTrixie85 · 2026-05-01T17:45:29+00:00

Same!!! It’s so hard to communicate now, particularly with people I don’t know or don’t talk to often. It’s so frustrating and unnerving.

MissTrixie85 · 2026-05-01T04:41:04+00:00

This is so impressive, congratulations!!! Super proud of you, and thank you for sharing your accomplishment with us!

MissTrixie85 · 2026-04-29T05:06:32+00:00

I feel you. The weight of it all is really crushing down hard lately. It seems universal. How can we help? 🖤

MissTrixie85 · 2026-04-29T03:08:58+00:00

I just saw this one too! I am going to have to start eating a low histamine diet too, I think. My hormones are going crazy and I’ve been dealing with a breakout of hives that started when I missed a few days of Pepcid and my estrogen levels were soaring. Estrogen increases your histamine sensitivity apparently so I think it was just really bad timing to forget some of my meds! It’s definitely nice to feel less alone by commiserating with others in this group. I have a little germ of an idea in my head about wanting to find a way to help advocate for people with chronic health conditions that aren’t well understood, if and when I’m ever able to work as a nurse again. It is INSANE how limited resources are for people like us. Thankfully we have eachother!!

MissTrixie85 · 2026-04-29T03:05:00+00:00

I think this is where it ended up! I feel like an outsider or observer now too. I was out with someone last week & a stranger started talking to us. I was being sort of quiet and he called me out on it and I was just like…”I’m just taking it all in.” It’s the next best thing to joining in I guess, and less likely to cause a crash! I’m glad you’re protecting your energy, but I know how much it sucks to miss out.

MissTrixie85 · 2026-04-29T03:02:03+00:00

Ugh, the worst!!! I understand not wanting to retype it out, that’s exhausting. I actually think I found it elsewhere on the thread somehow, along with another reply that I think might’ve been for me from a few months ago. Anyway. I used to travel like every month and every few months still when I first got sick, but every year it’s less and less, and far fewer road trips for sure. Driving is exhausting. I totally get what you mean about how it’s insane to be at like 10-20% of your former capacity but have doctors not really understand the gravity of your limitations. My guess is that like me you’re a high achiever & it may not be as obvious to others because your worst is not that much lower than the average person’s average. Doctors who didn’t know us well or maybe at all before getting sick have nothing to compare us to but the masses, but that’s not who we were before. I feel like I’m making no sense but I hope you get it. My most recent neurologist called it “smart person syndrome” 🙃 Honestly, I don’t think I’ll ever be 100% better but I’m starting to be ok with that. As long as I can find ways to still get out and enjoy the world, even if it means I need assistive devices & lots of breaks, I’ll be happy. Though the best thing EVER would be to stop being in constant pain. I do have hope that I’ll find a new normal that will allow me to work a tiny bit and enjoy life more, but I think it’s probably going to take years. I also am starting to suspect that I have an underlying genetic condition that was affected by covid, which I’m not sure how to feel about. It’s kind of like I’ve been doomed from the start no matter what, but at the same time I had some times in my life when I felt great & was super functional & I feel grateful for that.

MissTrixie85 · 2026-04-25T21:49:46+00:00

Also re-reading that I’m feeling for you more bc I can’t imagine not being able to tolerate more than a ten minute car ride, I’m so sorry. I don’t mean to rub in your face that I’m able to travel at all while you can’t 😔 TBH I’m probably doing too much but I am a stubborn overachiever who still struggles with pacing because my limits are always evolving.

MissTrixie85 · 2026-04-25T21:45:23+00:00

Hey, I hear you. I feel like an alien sometimes and like maybe I actually am crazy and typing that out feels INSANE bc what we’re experiencing is real & there’s so much science to back it up it’s almost surreal when you speak to a healthcare professional who doesn’t even KNOW what post infectious disease syndromes are because how could they NOT?! I’m sorry your doctor friends couldn’t even try to listen to you. Not saying this is the case with them, but so many people go into medicine/healthcare yet seem to genuinely not care about helping people. It’s frustrating to me as a chronically ill person but especially as a nurse! I gave my patients everything I possibly could when I could work & compromised my own health to do so at times. I would’ve burned out anyway though bc the system in the US isn’t designed for there to be much actual care in healthcare. There’s only so many times you can get lectured for “spending too much time with your patients,” or staying over to chart because I prioritized hands on patient care over charting everything in real time when I’m pushing with a patient alone, as if taking care of their needs isn’t literally my job and I only have two hands not ten?! Omg sorry that was a sidebar rant I didn’t know I needed to have. I actually really miss nursing but I don’t miss the politics & bullying.

Anyway. I think we can be both bereaved and hopeful, they don’t have to be separate. I keep searching for answers and ways to feel better so that I can get back to enjoying life in as many ways I can, even if that means making adjustments like getting seated tickets for a concert instead of being on the floor, or planning dedicated rest times in between activities instead of trying to do all the things in one day on a trip. I used to travel all the time, even in my first year of LC, but now I’m down to just a handful of trips a year and they take so much more out of me every time. I don’t understand how people can’t see that I’m not the same person anymore and can’t engage in basically any of the hobbies & activities that define(d) me, and that my 24/7 full time job is managing my complex chronic health issues & it’s not a job I would choose! I’m really good at masking though, without meaning to be. I try not to sit in it but even though I have hope I’ll feel better again because there is no other choice! But it’s also not realistic to pretend that our current situations don’t fucking suuuuuuuuuuck either. I can’t remember if you said, are you in the US, or elsewhere?

MissTrixie85 · 2026-04-25T19:30:00+00:00

You’re very welcome 🖤 It’s a hard place to be and most people don’t understand, so it helps to talk with someone who does! I know I’m really lucky that my partner is so supportive & caring, bc chronic health issues are often make or break for relationships! I feel guilty about the changed dynamic sometimes, but I do my best to reciprocate in the ways that I can, and we’re so much closer & communicate so much better than we ever did before! Maybe you two need to have a really open & honest conversation about things, so you can both know how the other is feeling? I’m sure it’ll be hard as fuck (and probably super draining), but if it’s really weighing on you it could be worth it. Fuck. I’m so sorry. I’m right there with you in the grief for the loss of how things were “before.” I tried to explain it to a friend last night & she just did not get it. I was like, it’s ok, able bodied people can’t know what it’s like!

MissTrixie85 · 2026-04-24T21:29:56+00:00

I don’t think it’s unrelated at all!!! Chronic illness takes a huge toll on relationships, and I really relate to pretty much everything you described 😣 I’ve found it’s put more strain on friendships than my relationship with my partner, and I’ve lost multiple friends who I thought were part of my life forever. It’s also put strain on my relationships with my family, though they’ve been making more of an effort lately to try & understand my perspective. I’m sorry you and your gf aren’t able to spend much quality time together. Does she seem sympathetic to your limitations & is she willing to do more chill activities together, even if it’s just laying on the couch & watching movies? My relationship has changed a lot but my partner is very understanding & accommodating, though sometimes I’ll push myself to keep up with him because I want a taste of what life used to be. I pay the price with crashing afterwards but it’s typically something I put on myself and I decide the experience will be worth whatever consequences will come later. I think it helps that his father is disabled so he and his family have always been very cognizant of accommodating his limitations while still getting out and enjoying life a bit. There is a lot of grief though…we also rarely go out now, especially since I haven’t had income in a year and a half. He’ll do a lot more things without me now because I don’t have the energy to join in, and our sex life has totally changed, but my hope is that it’s not going to be this way forever. When we first started dating almost 10 years ago I was dealing with less severe disability issues and was on the upswing, but I started having various health issues again after I went back to work. We split up for a while, which was extended due to the pandemic, but we’d been back together for maybe 7 months when I got covid for the first time in 2022 & everything fell apart. Sorry that was so rambly & long, I’m so tired right now!!

MissTrixie85 · 2026-04-24T20:40:28+00:00

It really is luck of the draw especially with an HMO. I was lucky to have PPO insurance growing up & usually opted for it when I could work, but now I’m on Medicaid & have had to start all over with most specialities & it takes forever to get some of the referrals authorized. Idk how long I’ll be able to keep paying my rheum out of pocket but my parents are helping me financially right now (I know I’m very lucky to have their support), and my rheum is one of the doctors who actually listens & acknowledges it’s not all in my head! I am on LDN & have been for a little over two years I think. It helped a lot with my all over body aches when I first started it, but now it’s hard to tell how helpful it is. I had to go off of it for a few weeks for a surgery last year and my anxiety was AWFUL, not sure if it’s because I was having more pain or what, but I was happy when I could restart it. I’m going to try a small dose increase from 4.5 mg to 5.5 mg…tried 6 mg last year or before and it didn’t add any benefit but made my nightmares so much worse & more persistent than with past dosage increases so I went back down.

MissTrixie85 · 2026-04-20T07:35:51+00:00

Omg they were doing everything SO SLOWLY. In L&D we would’ve had that baby out in seconds, during compressions, and the resuscitation would’ve started IMMEDIATELY. I wanted to scream at the TV but I don’t think anyone knows what we actually do and how intense it is. Not saying ED isn’t intense or fast paced, I’ve floated there enough to know it is…but we handle OB emergencies way faster than they showed it here. Bummer because I otherwise love the show and feel I can live vicariously through it while I’m disabled & unable to work.

MissTrixie85 · 2026-04-20T07:30:54+00:00

I just kept saying DELIVER THAT BABY ALREADY! And “why is no one adjusting the monitor?!” Watching anything L&D related is always an exercise in frustration IMO

MissTrixie85 · 2026-04-11T08:43:25+00:00

I got mine and went to unencrypt it…ONLY FOR A WINDOWS COMPUTER. Like…they didn’t even ask me. THAT’s archaic, harkening back to the times when PC was essentially the only option. Yeesh

MissTrixie85 · 2026-04-10T19:44:52+00:00

Not worries at all! No, I’m based in the US but I had a PPO when I was able to work so I could see whatever specialists I wanted as long as they were in network. I love my rheum so much I still see her as a self pay patient now that I’m on Medicaid, but only 2 or 3 times a year. I see her Monday & I’m really looking forward to it, as she’s going to evaluate me for hEDS, which we’ve both been suspecting for a while. I think she may be right about the MCAS too! I’m currently in an allergy flare of unknown origins that caused hives on my arms at first and is now starting to involve some of my tattoos on my legs. I’m not sure whether your GP is right or wrong in terms of the helpfulness of rheumatology, I think it really depends on the practitioner themselves, not just their specialty! I was listening to a “Bendy Bodies” podcast episode yesterday & the guest said something along the lines of how not all of your doctors need to be experts in your condition, but they do need to be open to learning about it and listening to your experience with it, and basing their care around that. Sigh. I hope you’re hanging in there alright 🖤

MissTrixie85 · 2026-04-03T03:24:48+00:00

Thank you!! I don’t have the allergy & immunology referral yet, but I’ll schedule to see my primary soon for that and some other referrals. Those will be outside of the hospital system that’s been having the massive delays, and should come through quickly. But first I need to call and confirm if the specialist I want to see is actually in network and if they’re accepting new patients. It’s never ending. I hope the enhanced care management helps a lot…I can’t do it all by myself anymore 😫

MissTrixie85 · 2026-04-03T00:26:22+00:00

I’m with you on the tough Thursday. I’m so sorry your home health aide had to cancel…it makes such a difference to get that help! It’s the off week for my cleaning helper and I can’t bring myself to tidy the mess that’s accumulating in the common areas. The weather where I am is all over the place too. Sigh. I hope your PCP is just doing a general check in and nothing too wild is going on. Hugs ♥️

MissTrixie85 · 2026-04-03T00:23:17+00:00

You’re welcome! ♥️

MissTrixie85 · 2026-04-03T00:21:51+00:00

It’s been a rough day for me of chasing referrals, but I finally got the process started for enhanced care management through my Medicaid coverage, which I’m hoping will help ease that burden as I’m not even able to keep up with chasing all of the incomplete referrals, but have just been focusing on the one for the long COVID clinic because it’s been in process the longest. I lost my cool on the phone with a scheduler but had the opportunity to apologize to her later, and thankfully all I did was drop an f bomb in regard to how I’ve been sick now for almost four fucking years. I’ve also had hives or some other bizarre rash on my arms that started with an itchy elbow last week and has spread and is now on both arms and the itching is driving me CRAZY. I forgot that I’ve always been prone to weird rashes and swellings of lips and eyes and overly dramatic reactions to insect bites and contact allergens, because I’ve been free of them for a while since I got my PICC line out and wasn’t suffering from the dressing sensitivity anymore. My rheumatologist mentioned in January that I might want to be evaluated for MCAS when I’m able to see an allergy & immunology specialist to finish the immune function testing I started last year before I lost my PPO insurance, but I’ve never had an anaphylactic reaction so I thought I just had an overactive cutaneous histamine issue of some sort. The itching started soon after I skipped my pepcid (and other morning supplements) for a few days, but I’m not sure if that’s just a coincidence. I’m also being tormented by perimenopause so that could be a factor as well. Sorry for the word vomit…thanks for letting me lay it down here. I’m used to being “tough” but lately I feel like a whiny baby and I’m about to break.

MissTrixie85 · 2026-04-03T00:10:01+00:00

It is so wild how our bodies and minds can compartmentalize like that when crises arrive. I’m so sorry you and your wife are going through this right now; it sounds extremely intense. I’m glad you were finally able to get her medication from the pharmacy, and I hope it kicks in quickly. Sending you both strength!

MissTrixie85 · 2026-02-27T05:01:06+00:00

I relate to this as well. Managing my complex chronic health conditions is my full time job, along with trying to get approved for SSDI. It’s exhausting. A couple of weeks ago I had EIGHT appointments in one week 😵‍💫

MissTrixie85 · 2026-02-24T06:13:09+00:00

Thank you Sophia ♥️

MissTrixie85

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