Thread by @theelizajames

I’m covid+.

My precautions have been extreme.

I’m immunocompromised, functionally impaired, & medically complex. My husband has diabetes, & nervous system/vestibular damage due to a bad med reaction. I’ve been concerned about outcomes for both of us. 1/

I’ll try to answer the questions here that I always wonder abt when I read others who have tested positive after saying they’ve been “so careful”. Diff ppl have different ideas of “careful”.

All in all, we have all the conditions to protect ourselves.

We have no kids. 2/

I can’t imagine losing more function to my already compromised life, so I’ve worn n95 & safety glasses w side shields. I actually wear a double cloth mask over my #envomask to be less conspicuous.

Since 3/20, all med appts have been online, except for 2 derm visits long ago. 3/

I do 95%+ curbside. N95 other 5’ish%.

Husband works from home. I don’t work due to my disability. When my body allows for a short saunter, I hold my breath when passing ppl. I try to choose wide paths, have a mask w me for emergencies but don’t wear while walking. 4/

1x/mo, husband wears an n95 + his glasses in a room w abt 12 others, all masked to varying degrees, not all high quality, I’m sure. He says it’s abt 1000+ sq feet. I wear an n95 for about a week after, til he is cleared w a PCR & have 2 #corsi boxes & an #IQAir HEPA’s going. 5/

I’m vax’d x 3.

All to say, bc I’m already so compromised, we have been extreme. Again, I’m *very* concerned abt long covid & can’t imagine losing any of the little function I have left. Life has been a medical roller coaster w much loss, grief, & instability already. 6/

I’ve had some allergy like symptoms. Very mild. Nothing out of the ordinary. But my allergy meds didn’t impact them in the slightest. Just for kicks, I took a rapid test, not having much faith in them as I’ve read they are only 37% accurate at picking up more recent variants. 7/

Since my throat is a bit irritated, & I’ve read that many have discovered their +’s after a throat swab, I did throat then nose. Strong & fast +, in under a minute. Then did just my nose, no throat swab. Also + tho it took a few min & was a bit more faded. Husband is - so far. 8/

I’ve kicked the can down the road on the 2nd booster. I’m sensitive to meds & often have side effects to things others find benign - so always feel tentative about meds bc I’m scared due to my non-vax related history of reactions. I planned to get it, but dragged my feet. 9/

I also have been holding out hoping for a more Omicron specific vax. I’ll be able to say at some point if I regret delaying my 2nd booster or not. With what I know abt LC, I do kind of wish I would’ve gotten that dang shot, if to just minimize the LC risk even a little more. 10/

I’m not very active on Twitter & not very well connected so don’t expect many to see this. But, as a person w #chronicillness, this is info that I’d have appreciated to help me guide & weigh decisions in such an uncertain world. It feels like we’re very much on our own, 11/

and it’s ppl sharing their experiences, their expertise, & the science that I’m not seeing enough of in MSM that has helped protect each other. If you’re vulnerable & covid cautious, this thread is for you to help guide decisions. I see you & I care.❤️

12/end

Test asap even if u think u have allergies. I waited few days bc sx’s were so mild. Infusion ctr is so full they simply can’t fit me in for monoclonal in time. Had I tested immed, I may have gotten in. Trying for Paxlovid & hoping I can absorb enough w altered gut.

If u test + at home, still get a PCR… results that r official & can end up in ur medical record. IF long term complications from the initial infection or long covid impairs ur ability to work, this can help w a disability claim. Home test only => no proof u had covid.

Some great ?’s came from @1goodtern. Thx for prompting me to clarify. I’ll keep adding as I think of things to paint a better picture of my life:

Our townhouse has no common indoor spaces nor shared air/vents w neighbors. We have our own entry doors, our own heat pump.

I avoid public indoor spaces far more than most. If I have to go in to the pharmacy, I wear my NIOSH n95 @envomask w a double layer tight weave cloth mask over it (just to blend in a little better), & much of the time hold the mask to my face bc I’m scared of a broken seal.

I also wear safety glasses with side shields, tho they leave a small gap at sides. No drive thru at the pharmacy, & they stopped curbside.

(Will b switching to drive thru pharmacy moving forward. Am surprised I’d not done that!)

For abt the last year, when picking up meds, I tried to relax & allow myself to make a quick paced trip thru the same store for 1-5 grocery items, w @envomask n95 + cloth + safety glasses. Abt 1x/week’ish. Big trips beyond that r always curbside.

I avoid public restrooms! Yucko! Small space, poor ventilation. No thanks! I’ve learned about aerosols & toilet spray! 🚽

I wouldn’t DREAM of going into a cafe/restaurant to dine.

Well, I may literally dream it - but I’d wake in a heart racing panic from my nightmare.

Here’s what I did the week prior…I had changed things up a bit:

1) We stood outside at a car dealership, at a distance, breezy day. The dealer was amazing in accommodating my request to do all paperwork outdoors. (5 stars!) We did not step foot inside.

We didn’t test drive the car or get in it prior to driving off. It had been pre-ordered, new. I insisted all doors/windows/hatch b open to air out for awhile before husband got in his new car. He & sales person masked as she briefly pointed out interior car features.

I kept at a distance. (I think I had the earliest of my “allergy” symptoms already anyway on this day.)

2) I ran in to for rx/grocery store. Quick, 10’ish min or so. Hard frame n95 + dbl cloth mask over it + safety glasses, much of x holding mask frame to face just for kicks.

3) I changed my walking habits. The entire last year, I’ve been walking in our neighborhood, crossing the street or otherwise allowing large distance to pass others. But, I need nature like I need air. #chronicillness +
Covid can take a big toll & I needed some “nature baths”.

2 wks ago, I started going to a trail that meanders around a lake 1st thing in the AM. The trail ranges from abt 5’ or 6’ to 15’ wide. It’s a well populated park w morning walkers/joggers. I didn’t wear my n95, just had it for emergency.

I’m not 100% comfortable in settings like this, even if outdoors, so I held my breath when passing.

I’ll never know how I got covid. Poor n95 seal while making my mad dash thru the store? Outdoors on the trail? Eye entry? Rare fomite?

Met this mischievous guy at the lake. Who knows? Maybe he gave it to me…

(No, I don’t really think so…it’s a joke!)

What I do know:

I’m the silly person still wiping down her groceries.

I’m someone who knows about aerosol spread, and uses that info to guide my decisions.

I’m a person looked at as “over the top” w covid caution.

I still got covid.

As of now, husband is still testing neg on both rapid & PCR. I can share a new thread later abt how we’ve protected him. So grateful to others for sharing their experiences, as it helped me know exactly what to do and have the tools ready at home to do it.

Apologies if I could have organized this better. I am far more used to being a wallflower on Twitter than I am posting. I’ll share more going forward on my Paxlovid experience, difficulty getting monoclonals even w an rx, how we’re protecting husband from me/covid, & more.

My booster was in 11/2021. Seven months ago.

Clarification about being "immunocompromised": I do have #ibd (Crohn's/ulcerative colitis), but haven't been on immunosuppressive drugs for abt 2 decades. I have, however, lost nearly all of my intestines due to complications of my condition...

#shortbowelsyndrome

I have no lg bowel & only 3-3.5 ft (91-106 cm) of small bowel. My med team reminds me that much of immune function is in gut. Since I don't have much gut, they assume immune function is impaired. By how much? No idea. I'd guess not nearly as severe as some1 on meds that suppress?