🧵.

I thought I’d go back to work after my paid sick leave ran out. But going on medical leave helped me realize just how badly sick I was. And I’m appalled at the level of pain, illness, & fatigue I had normalized working + pushing through.

https://twitter.com/colocha_rachel/status/1537588384159375361

Other events happened in my case that wound up making a return to work impossible, namely the severe + life-threatening progression of my airway collapse due to relapsing polychondritis, but honestly I was *disabled enough* LONG before that happened. I just didn’t know/accept it.

I spent much of today going through a mountain of prescription receipts to identify and submit claims for meds that weren’t covered by my extended health insurance.

So much of my experience healthcare coverage is basically a war of energy and attrition. For clarity, this is for receipts where prescription coverage was denied due to bureaucracy (e.g., UBC f-ups caused me to lose coverage for a bit), or technical issues, not meds where they denied coverage based on policy—I have even more of those!

I may have ‘leveled up’ in my medical self-advocacy 😂.

Rather than stewing on a response/only speaking up later, I just *reflexively* & sternly snapped at a doctor:

“Do NOT misdiagnose me with anxiety when I am upset with you over the mishandling of my medical care.” She had just patronizingly begun saying “I can see you have a lot of anxiety over this,” because she could hear in my voice that I was upset at her disrupting my current pain management meds for my autoimmune disease because the pain meds also help w/kidney stone pain.

The good news is that I think I’ve figured out why the compressor on my portable AC keeps shutting off, making my room overheat.

The bad news is that I can’t find the upper drain hose anywhere, so the issue isn’t something I can easily fix right now… I’m debating between trying to rig something with an old CPAP hose and just buying a universal hose. Looking for it is overheating me and my room.

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…

@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.

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.

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??

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!

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.

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!!

Question: If you had to live somewhere in the United States where a car was necessary, what would the absolute minimum cost be for a used car that is reasonably safe and reliable?

(Assume Western US; most likely northern WA)

[I’m contingency planning.] Looking to create an absolutely bare-bones budget in case I wind up having to return to the US before my BC medical coverage ends. In which case I’d need to have options to return to BC for medical care. [It is often easier to find someone to drive than someone who has a car.]

Facebook has done a lot of evil.

But it is the primary way a lot of rare disease patients communicate with each other (true for my two truly rare conditions).

I have a couple people’s email addresses/Twitter accounts, but it would really suck to lose those communities. Not to mention the tremendous amounts of labor some people in our communities have put into educational resources, article sharing (not everyone can easily find academic articles!), healthcare provider lists, etc.

Even if we rebuild elsewhere, it is a lot of work.

Thought I was maintaining my SpO2 well enough to spend a little time off BiPAP but apparently nope.

Was wondering why I felt dizzy & awful so checked my oximeter and was satting *just* above the alarm threshold. So much for my to-do list. Got to hang out in a zero gravity position with my lovely little breathing machine until I can human a bit better.

Hey psych of religion and persuasion/social influence researchers of #AcademicTwitter & #PsychTwitter! Can you recommend some (good, evidence-based) further readings for a motivated community college student?

Topic/questions here & in next QT:

https://twitter.com/sickandsalty/status/1444328679216230409

Additional topic foci (and one more below in thread):

https://twitter.com/sickandsalty/status/1444329040417001475

#DEHEMRollCall
Hi, I’m Tara. I’m a multiply disabled social psychologist currently on (extremely extended) unpaid medical leave from my Banting postdoc at UBC.

My life lately has been dominated by the consequences of having severe, refractory relapsing polychondritis (RP).

🧵 Relapsing polychondritis (RP) is an extremely rare autoimmune (& potentially also autoinflammatory) disease that attacks cartilage & cartilage-like tissue throughout the body. I had symptoms for decades but was only diagnosed in 2020.
My RP has caused tracheobronchomalacia (TBM).

@DisInGradSchool I’m going to respond as a postdoc and say that I’ve witnessed this go multiple ways.

I have (as an instructor) reached out privately to a few undergrad students in my classes. The overwhelming response was gratitude someone cared… [Large R1.] @DisInGradSchool In one instance, I called the counseling center (on my cell phone, with the student sitting with me, with their full consent/at their request) and said they needed to be seen. The counseling center was notorious for extremely long wait times and my call bumped them up the queue.

You are all amazing.

In 24 hours, my GoFundMe is over 1/3 of the way to its goal. (Slightly further even than it shows, due to s handful of donations via PayPal and Ko-fi. I need to figure out how to update it to reflect this progress.)

https://twitter.com/taracdennehy/status/1408630589901529092

I’m… speechless. I haven’t been able to keep up with my notifications. Or respond to the lovely messages of support.

It has been very easy to feel hopeless lately, with how sick I’ve been, but you all give me hope.

My academic TL is *thrilled to announce* that they are starting amazing new positions, winning awards, publishing papers, presenting at conferences...

In applying for disability I’m realizing just how badly my attempted career in academia has screwed me over.

#DisabledinSTEM 🧵 I’ve been absent on Twitter (& DMs & email) lately because all of my energy has just been going to trying to survive.

But it is absolutely incredible just how badly the nature of grad & precarious academic contracts harm disabled and chronically ill academics