Snapped Dragon

Anyone remember this and have a link? I can’t remember the activist’s name, but I do remember she passed away at a fairly young age a couple years ago. US-based. She had a background in law and dealt with chronic pain and diabetes.

#DisabilityTwitter , I need your help! Several years ago, a disability activist wrote a beautiful open letter about how public health professionals often have an “us vs them” mindset about poor/sick ppl and asking: who is ‘them’ and why aren’t they part of the convo?

@beth_morton A3. Ugh, I don’t really want to admit this, but if an insurance issue doesn’t go away after one nice attempt on my part, I cope by putting on my pretentious health economist persona for round two of the argument. #MigraineChat

Q3. Inevitably, living with #migraine means dealing with insurance. What is the burnout from dealing with insurance companies like? Do you have strategies for managing that type of burnout? #MigraineChat

@sarie_ellen @beth_morton Yep, I spent years ignoring GI pain because it wasn’t as bad as my migraines. Although once I finally addressed it, there was some relief in it turning out to be a fixable issue, unlike my migraines seem to be #MigraineChat

@beth_morton A2) I’m just coming out of appt burnout. Neglecting the rest of my health to take care of my #migraine is triage, but it def causes problems. (See my $1200 dental bill.) I catch up whenever I’m able and don’t beat myself up. #MigraineChat

Q2. With #migraine (and other comorbidities), we tend to see lots of medical providers. If you experience appointment and/or provider burnout, what is that like? How do you manage that type of burnout? #MigraineChat

@beth_morton A1. I think this has mostly happened when I was trying to do multiple time-intensive treatments. I was seeing a neurologist, a PT, and an osteopath, and they all gave me exercises. None helped and everyone was criticizing me. I felt overwhelmed and guilty #MigraineChat

Q1. If you have experienced burnout from trying #migraine treatments over the years, what does that feel like? How do you manage treatment burnout? #MigraineChat

@HemingwayMuse @beth_morton A1: Resentment at all the STUFF everything seems to think I *should* be doing to get better! (E.g., daily cardiovascular exercise, food stuff that a rando made up with no evidence). Plus, guilt about not doing all of it at 100% all the time. #MigraineChat

New from Health Economics: threatening to take away people’s disability insurance may worsen their mental health. Y’all. This got published in a wildly competitive journal in a field where nearly all of the historical lit on disability is about “fakers” doi.org/10.1002/hec.46…

Turns out there is a grim satisfaction to recommending reject on bad medical papers written by MDs who clearly know nothing about research.

@emilygayle99 @beth_morton I love massages but can’t handle lying face down with my face in the face cradle thing. My masseuse is really good about managing to work on my neck and shoulders while I’m lying face up.

hey #migraine #MigraineChat fam— going for a massage in like 6 hours and I’m worried that it will trigger a migraine attack. any tips to try to mitigate this?? what have your experiences w/ massage therapy been like? thx xoxo

@lyzl Yeah, pretty sure being married to either of my grandfathers would have been hell. Also, my maternal grandfather claimed to be a windower and when my mom looked it, discovered that my grandfather had divorced the lady after her cancer dx and my grandma was actually his third wife

@cronewitchswamp @beth_morton I took hormonal birth control pills continuously (ie, skipping the placebo week) to see if it helped my migraines. It didn’t really and I felt like my body didn’t like it. But, I only tried this after my menstrual migraines had transformed to chronic.

@beth_morton @SMauro1622 A4. I am going to Venice next month and I’m SO PSYCHED for blown glass stuff in Murano. Also, this is reminding me that I used to love traveling and how that is another hobby that I’ve had to make major changes to. #MigraineChat

@SMauro1622 I would LOVE to learn glass blowing. I live near Simon Pearce and have watched their glassblowing demos. It is so cool. #MigraineChat

Q4. What new hobbies or pastimes have you started since you were diagnosed with #migraine or - if applicable - since migraine became chronic/disabling? #MigraineChat

@SMauro1622 A4. I love blown glass, but I took one class and decided that with the heat and brightness, it wasn’t for me. What accommodations do you use? #MigraineChat

@beth_morton A4. I got really into reading romance novels - the lightness and predictability mean that they don’t require much thought. Also, I play so much Stardew Valley. #MigraineChat

@SMauro1622 @beth_morton A3. Oh yes, I keep earplugs in the kitchen for when I need the food processed or the exhaust fan over the stove. It’s amazing how loud that thing is! #MigraineChat

Q3. Are there any hobbies or pastimes that you have been able to continue with #migraine (or with chronic migraine) thanks to certain accommodations, pacing, or other modifications? Please share which ones and how you’ve adapted! #MigraineChat

@beth_morton A3. I love baking, but I definitely have to pace myself. Things where I can take a break and put the dough or whatever in the fridge for a while are best. #MigraineChat

@MigraineAgain @KerriWolften @beth_morton Q2-Q3: yes, I have reduce the jumping, too - any movement that makes it feel like my brain is bouncing around in skull is a no for me! #MigraineChat

@DragonSnapped @KerriWolften @beth_morton Big fan of Zumba over here too, but I have to skip all jumps & spins and am the weirdo w/earplugs in my ears during classes🙃 #migrainechat

Q2. Are there any hobbies or pastimes you had to give up due to #migraine or migraine symptoms? Can you share which ones and why you gave them up? #MigraineChat

@MaeNena73 @beth_morton A2: I feel like outside hobbies also often involve coordinating with other people, which is difficult with chronic migraines. I used to go indoor rock-climbing more, but having to cancel all the time sucks. #MigraineChat

@HemingwayMuse @beth_morton A2. So glad you’re able to read again - reading romance novels when my pain is low or moderate is a great comfort to me. #MigraineChat

@KerriWolften @beth_morton A2 - yes! I used to like Zumba, but now it’s intense and loud and a pandemic anyway #MigraineChat

@beth_morton A2 I used to take karate. That’s something I really enjoyed that I can’t pick up during anymore due it to being a intense exercise/sport. #MigrainChat