Thread by @taracdennehy

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.

My family practice doctor is refusing to do any further treatment or support for my kidney stone pain until I get imaging AND come to the office. Despite the fact that I’ve had two previous confirmed stones (one on imaging, one sent to the lab) this calendar year.

I’ve explained MULTIPLE times that I cannot make it in for imaging until I get my power chair. And I dispute that an in-person office visit would be clinically useful—it only raises my COVID exposure risk and a scan of my kidney is more useful than them poking me in the abdomen.

And I am not going to go to the ER for this pain unless I think there’s a legitimate risk of kidney injury or death. [My creatinine was within normal bounds last week & I feel *awful* when I have an acute kidney injury.]

The risk of getting COVID in BC hospitals is far too high.

But they were refusing to refill a medication—relatively low dose diazepam—that I have been taking for my relapsing polychondritis pain (severe arthritis flares tend to precipitate muscle spasms) since last year. [I’d taken it in the US too, but docs here are ridiculous.]

I was already super pissed off at her making these broad sweeping statements that I know are false:

“2 mg is a very high dose.” (It isn’t.)

“We don’t prescribe diazepam for pain.” (Umm, have you met a complex autoimmune patient before?)

Being able to sleep is crucial for managing my disease. My breathing gets *much* worse when I don’t sleep.

You know what makes sleep difficult? Pain.

You know what helps pain? [You get where I’m going with this.]

I can’t take NSAIDs unless I’ve just had bloodwork to check my kidney function.

Tramadol/tramacet make me sick.

They refuse to prescribe opioids for anything more than an extremely short course.

My regular docs refuse to prescribe Sativex.

CBD-THC is too expensive otherwise.

Like, okay, refuse to treat the kidney stone pain. I’ll manage. [It sucks, but I’ll deal with it.]

But do NOT take me off a med I use to manage my autoimmune disease pain because it *helped me* with my kidney stone pain.

That is complete bullshit and would be purely punitive.

So now I have to worry about whether the fact that I didn’t regularly stay on top of refills when I didn’t need them is going to jeopardize my ability to continue to get this med prescribed, because she said they were going to check with the pharmacy 🙄.

F***. They only prescribed ten 2 mg tablets. Because I didn’t refill it regularly between January and May—when I was on methotrexate, which actually really helped with my joint pain + the consequent muscle spasms. [But unfortunately it was hurting my kidneys & lungs.]

They want me to make another appointment to discuss why the diazepam was prescribed in the first place and “better pain management.” Because their continuity of care is near zero. [Like seriously, read the damn chart.]

I’m not sure if it is even worth it.

My joint pain (& consequent muscle spasm) has gotten so much worse since stopping methotrexate. So just because I wasn’t taking diazepam as often as we re-increased my methotrexate dose between February and April *does not* mean I don’t need it now!

My shoulders and hips really hurt.

I hate bad doctors.

It also just really pisses me off because I’m literally being penalized for *limiting* my benzo use during a time period where I wasn’t having as much pain + muscle spasm. Now that I’ve had to stop the medication that helped my inflammatory arthritis, the pain is worse again.

I guess the real take-away is that I need to always fill a med even if I don’t actually take it.

It is just tough to remember to do—with brain fog/cognitive dysfunction—because I use running out of (/low on) a med when filling my weekly pill sorter as my cue to request a refill.

I need to be able to cook (to feed myself) and clean (because my cleaner is on vacation) but my shoulders & neck are really painful. And I literally can’t turn my head to to the right.

If/when my extended health insurance actually processes my latest round of reimbursements, I may actually be able to afford some more cannabis gummies for pain control/muscle spasm treatment.

Cannabis is actually what the complex pain doctor had recommended! But it is $$$.

I can (sometimes) get Sativex prescribed while in-hospital, but none of my docs have been willing to prescribe out-of-hospital. And a prescription is the only way to get costs (even partially) covered.

I would love actual continuity of medical care.

My extended health insurance has been taking *weeks* to process claims lately. So if anyone is inclined to help me buy CBD-THC gummies or pay the person I found who can fill in for my cleaner this weekend/next week, I’d be very grateful! (Links in QT.)

https://twitter.com/taracdennehy/status/1510041603494187010

Sheesh—my reading comprehension rn.

Apparently *one* link was in the QT and the rest was making people look elsewhere! So here are the links:

PayPal: paypal.me/TCD212
Ko-fi: ko-fi.com/taracd
GFM (open but not old/not actively maintained): gofundme.com/f/help-tara-br…

And typing ability right now 😬.

The GFM description should be “open but old/not actively maintained.”

4 am and still can’t sleep because the muscles around my hips are in spasm 🙃.

Wound up getting a few hours of sleep, thankfully. But the muscles in my hips and low back seized up so badly during sleep I can’t stand upright/fully straighten this morning. Thank goodness for rolling chairs ;)

This seems to really be doing numbers, so I want to acknowledge that I have a ton of privilege that made it possible for me to say this. In addition to being white and having a PhD, I am moving in a month, so will be leaving this medical practice.

My family practice clinic has threatened to fire me as a patient for self-advocating *so* many times. [I’ve only avoided it by reminding them it would be disability discrimination for them to do so.]

Here in BC there is zero way I’d be able to get a new GP/family doctor.

After I said that to the doctor, she told me I’m welcome to find another doctor who will prescribe the meds. I had to remind her that I’m being forced to move back to the US so am literally just trying to survive the next month.

But I know speaking up can have consequences.

It felt damn good to be able to say something, though.

As I’ve become more physically disabled and as objective tests have validated the damage I’ve incurred from decades of missed & delayed diagnoses, I have been speaking up more. (It can be such a difficult tightrope to walk.)

Oops. My wrist has swollen way up from tweeting so much 😬.

Fun update: According to my pharmacy, my clinic didn’t fill the diazepam prescription *at all.* Not even the 10 tablets.

And for some reason they also didn’t refill my Singulair?

Oh my goodness, you lovely people!!!

I just checked my email. I am floored by your generosity. I now have funds to order (a sizeable number of) gummies & pay a cleaner.

As much as I could use funds more generally, there are a lot of people whose needs are more pressing rn.

So I’m going to plug a few fundraising tweets downthread. These are either for direct mutual aid, or are they are for hyper-local groups trying to accomplish specific goals. This means that your money goes to help people in immediate need, rather than to organizational overhead.

There are a lot of folks in need so this is not going to be exhaustive. But I wanted to highlight a handful of fundraisers I was either aware of, or were recommended by people I trust. Individuals are listed before orgs, but order is otherwise randomized.

(If I continue to get donations to my fundraising links, I’m going to start redistributing funds, hopefully accomplishing the same goal.)

Here goes:

Another thunderstorm just hit Ontario. Aasiya is under constant threat of power outage & still does not have a generator to keep her life-sustaining equipment running. Please help her get a generator. EMT info@ecohesian[dot]ca, memo #WTESS Medical Fund.

https://twitter.com/Ecohesian/status/1528066724557463552?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

@qjusttheletter NEEDS a wheelchair that won’t physically harm them. Q is a death doula who also helps vulnerable people access local + international mutual aid networks. Q needs your help now.

https://twitter.com/qjusttheletter/status/1477769041804599296?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

In the next months, Alex (alias) needs to pay $5k+ in legal fees in a court case fighting their abuser. They are a disabled queer, trans survivor of color seeking support to defend themselves against legal harassment & intimidation from their assailant.

https://twitter.com/Itmechr3/status/1479673284799209476?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

@Tinu is a pillar of the disability community on here & continually uplifts others. (See #ForTinu.) She has had an awful stretch, recently experiencing a post-COVID recurrence of cancer, & losing her family matriarch. Please help her recover.

https://twitter.com/Tinu/status/1535547157637484544?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

@masks4eastvan is trying to get N95 masks + rapid tests to vulnerable people in East Vancouver. N95s may not seem expensive to some of you, but for people in poverty they can be completely unaffordable.

https://twitter.com/masks4eastvan/status/1526288983667245056?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

Words can’t fully describe what Marpole Mutual Aid does for the community, but please check out this thread detailing their accomplishments and donate to their PayPal: paypal.com/paypalme/marpo…

https://twitter.com/movementauntie/status/1521162853213884416?s=20&t=B2flahYg1s7qHXDgTOLSKg

Update:

https://twitter.com/taracdennehy/status/1537647485031620619?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

Thank you all! I am so grateful for your generosity, and ask that you continue to share it with the fundraisers detailed in this QT (tweets downthread):

https://twitter.com/taracdennehy/status/1537647485031620619?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

Add-on 🧵, to boost some fundraising efforts:

https://twitter.com/taracdennehy/status/1537647485031620619?s=20&t=iLo4nOQBA3-DVfFw_YtMKw

I ordered gummies *and* a topical balm (for muscle/joint pain) that I’ve been wanting to try but never felt I could justify the cost of. They should arrive today 💗💗💗.

And a substitute cleaner is coming tomorrow to help me get caught up on housework.

So grateful to you all!!