Oh VGH kitchen. I asked for chicken gravy to put on the *potatoes.* (Which apparently arrived as a singular small potato.) NOT on the ginger-sesame cod. Please stop pouring gravy on items that should not have gravy…

Also, changing someone’s selections is not following the menu.
I’ve been trying to save the remainder of my gift cards for when I get home in case my health deteriorates as predicted. But they are making it really hard.

Also: I avoid raw granny smith apple slices even when feeling healthy… What did they remove to sub those in??
I’m sorry. I really did try to eat it. But now I’m trying to figure out how to fully erase that chicken gravy ginger cod flavor from my mouth… I even ate an apple slice despite it being not ideal for my still-healing GI system.
I’m okay though today because at least they got breakfast & lunch correct. So I wasn’t heading into dinner already feeling nutrient-deprived!

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More from @taracdennehy

9 Jan
I’m not sure why I didn’t realize it until I got home, but my cognitive function during this last week of my hospital stay was *significantly* better than it has been since summer 2020… (With the exception of the one night immediately after a 500 mg steroid pulse.)
It took up 90% of my focus and energy, but I did a deep dive into learning about acute phase reactants in hopes of finding potential inflammatory biomarker candidates for RP. At first I was just skimming RP articles, which I do whenever I’m able to. But then I got molecular…
Now I’ll confess here that I took chemistry at the local community college after some bad university math experiences. So although I have a ridiculous amount of medical knowledge, I really don’t have the chem background for this. So I was reading from scratch.
Read 9 tweets
9 Jan
@InspiredAquaCA @MedicineMatters They’ve been doing this before Omicron was impacting the hospital. During my VGH admission in November, my nurse told me the PHO had given them the directive to “treat COVID patients like the flu” and mix them on wards w/non-COVID patients. The majority w/o airborne precautions.
@InspiredAquaCA @MedicineMatters It was a major change from my admission last August when I was assured that every patient on the floor had been tested & was COVID-negative. I’m severely immunosuppressed w/respiratory issues, so this policy change had a major impact on my VGH stays between Nov & today.
@InspiredAquaCA @MedicineMatters The new thing in the memo is the intent to mix COVID patients *in the same room* as non-COVID patients. But given that that VGH *only* takes airborne precautions for aerosol-generating medical procedures, anyone in the ward is at risk from COVID+ patients.
Read 4 tweets
8 Jan
Okay, well—it looks like I’m being discharged today!

The internal medicine doc has been fantastic but rheumatology has definitely been a limiting factor. So it’s unlikely I’ll improve further.

That said, the IM doc gave me a lab req so I can test as things get worse post-D/C ;)
It will likely take some time to get the discharge processed and transportation arranged, so we’ll see when I actually get home. But I’m looking forward to my bed & proper showers.

More apprehensive about the inevitable decline in my cognitive function as things get worse again.
Ugh, my ears are flaring—both my internal & external ears, so the hearing in my left keeps blanking out.

Right when rheumatology is claiming there’s no evidence of active inflammation in my body too 🙄.
Read 8 tweets
8 Jan
Got my COVID vaccine dose #3!! Along with Prevnar 13 in my right arm. So I may be in for an interesting 24-48 hours.

Here’s hoping they reduce the booster window so I can get my COVID booster sooner rather than later. (It is a 4-dose series when you’re immunocompromised.)
Also, got Moderna this time after Pfizer for the first two doses. Given that this is the lowest immunosuppression I’ve been on in a year I’m really crossing my fingers that mixing + matching will help me make antibodies!
Once I’m 8+ weeks out I’ll be eligible to get Pneumovax if I’m stable enough to pause or reduce my immunosuppression. 🤞🤞🤞
Read 4 tweets
7 Jan
Question for #NEISvoid #SpoonieChat #MedTwitter #TeamClots

Does anyone know what might cause *intermittently* fragile & hard-to-access veins other than differences in medications?
Sometimes I get blood drawn with zero issues, but at other times…

#TW blood, bruising, IVs next:
Photos #1 & 4 are from blood draw attempts. Photo #2 is the only successful IV my entire first week in the hospital. Photo #3 is from a blood pressure cuff seemingly rupturing a blood vessel in my arm.

All of these happened at times my INR & PTT were clotting on the quick side. Photo of a freshly blown hand vein from a blood draw. Some bPhoto of a (functional!) forearm IV that looks like it is stClose-up photo of an upper arm with a “band-shaped” bruiPhoto of an arm with a number of deep purple bruises on it f
This kind of reaction & being an “impossible stick” happens almost every time I’m sick enough to go to the ER, but only rarely when I get blood tests at home/in the community. In fact at home I’ve been a relatively easy stick.

Correlates w/autoimmune flares & reticular patterns.
Read 9 tweets
7 Jan
Give me a doctor who is *curious* about my rare autoimmune disease over a doctor who thinks they’re an expert any day…
Internal medicine doc has been *so* engaged and curious and willing to think outside the box, but can’t/won’t override rheumatology. Rheumatology seems to think they know all the answers and want to defer to “established clinical practice.” But that doesn’t really exist for RP!!
Rheumatologists almost invariably wind up treating RP like seronegative RA with airway problems. But the more research that comes out about RP, the worse it seems like this practice is. If anything, RP is more like vasculitis and autoinflammatory disease. But w/no blood markers.
Read 5 tweets

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