u/Jules4live

Hi everyone, really appreciate your insight here.

I am someone with POTS MCAS vestibular migraine, SFN, and fatigue and cognitive problems - all due to long covid, since 2020

I also have been active with the patient led research collective (PLRC) and related support and outreach groups such as the ECHO program, for long covid and post viral chronic illnesses.

We were aware early on that the burden of patients seeking care for post covid dysautonomia would strain the seemingly limited resources of physicians who regularly treat it. I imagined there would be some attempts to bring on more doctors to treat the growing numbers of long covid patients needing help for POTS and other manifestation of dysautonomia for example. That did seem to happen in some areas.

However recently I think I am seeing the opposite. A hospital system in Michigan cardiology department stop seeing POTS patients and sent out a memo to pcps on how to treat. Also many allergists who formerly saw MCAS patients are no longer treating them, even with diagnosis from tryptase testing (which is hard to get at the ER when needed.)

Curious for any insights you may have.

1. What financial/business pressures, if any, might be behind these decisions.
2. Have you encountered anti-chronic illness bias in your field in the wake of the increase in chronic illness? “wasting resources” etc
3. What do you imagine the conversations to be like when these decisions are made? I am hoping to understand how declining to see a whole category of people based on a shared diagnosis is justified, especially when the diagnosis clearly fits within their specialty. ie cardiology or neurology for POTS and allergy/immunology for MCAS. Any thoughts on how you imagine that gets squared? Are doctors making these decisions?

Thank you for your insights. There are so so many of us. I am trying to learn what I can to bridge the gaps so that more people in the future can have access to documentation and treatment management for these conditions.

Hi everyone, really appreciate your insight here.

I am someone with POTS MCAS vestibular migraine, SFN, and fatigue and cognitive problems - all due to long covid, since 2020

I also have been active with the patient led research collective (PLRC) and related support and outreach groups such as the ECHO program, for long covid and post viral chronic illnesses.

We were aware early on that the burden of patients seeking care for post covid dysautonomia would strain the seemingly limited resources of physicians who regularly treat it. I imagined there would be some attempts to bring on more doctors to treat the growing numbers of long covid patients needing help for POTS and other manifestation of dysautonomia for example. That did seem to happen in some areas.

However recently I think I am seeing the opposite. A hospital system in Michigan cardiology department stop seeing POTS patients and sent out a memo to pcps on how to treat. Also many allergists who formerly saw MCAS patients are no longer treating them, even with diagnosis from tryptase testing (which is hard to get at the ER when needed.)

Curious for any insights you may have.

1. What financial/business pressures, if any, might be behind these decisions?

2. Have you encountered anti-chronic illness bias in your field in the wake of the increase in chronic illness? “wasting resources” etc

3. What do you imagine the conversations to be like when these decisions are made? I am hoping to understand how declining to see a whole category of people based on a shared diagnosis is justified, especially when the diagnosis clearly fits within their specialty. ie cardiology or neurology for POTS and allergy/immunology for MCAS. Any thoughts on how you imagine that gets squared? Are doctors making these decisions?

Thank you for your insights. There are so so many of us. I am trying to learn what I can to bridge the gaps so that more people in the future can have access to documentation and treatment management for these conditions.

Hello,

I am a traditional witch who uses some tools and folks stories I was gifted by some Indigenous friends. I am no longer in touch with them and in the spirit of a creative and self-guided path I am sourcing different places and perspectives to come up with a solution.

I have had a medicine bag that I hand sewed and added important items representing milestones and types of power over many years. the bag is never to be opened.

It has a lot of magical power that is connected to me. It is a little bit like an identity home outside of my body. It warms my hand right away. It is the only object magically that I care about and feel consistently connected to, even after leaving it be for some years. When i come back to it, it always has its strong energy and never seems to need a cleaning for example. it is very linked to me in this sense energetically. it feels like me; never feels foreign.

Now to the question-

I recently had a natural disaster of sorts- I became very sick and became anaphylactic- I had to leave all of my possessions behind and was brought far away with family to survive and heal. Some acquaintances and new friends sorted through my things. My art and supplies were given away, my cat was adopted, some important papers were saved without my knowing which.. this medicine bag was probably opened and placed in a bag somewhere or thrown out or given away. I do not think I will be able to find out where it is, but I will ask.

How can I put the energetic bond to rest safely, or, perhaps, make a new one and ask the energy of the old to enter in for continuity. I feel like this will help me come back to center as the whole experience has been very hard. it is rough that it together will all my possessions were shuffled and rehomed in slapdash fashion and without my saying goodbye. something very powerful feels treated in a disrespectful way. Im quite upset and the pain sits just above my solar plexus and pulls down on my heart.

any ideas? feel free to borrow from any tradition that speaks to you along similar subject lines.

thank you 🙏