September Update

Hi everyone,

I was able to resolve my pre-eviction status and cover all of my Sept bills.  This disease is impacted by stress, so that financial relief allowed me to heal more effectively.  October bills and rent remains a stressor. 

My days and weeks have been very short and chaotic. 

My system is working hard to repair itself at night, so I wake up completely drained most days. My "energy budget" is very limited and unpredictable during this first and worst phase of treatment. 

Cooking, cleaning, and showering are all I can handle most days. My spare energy goes to resolving urgent errands, tasks, appointments, and problem solving. This led to canceling shows even though I really wanted to perform and really needed the money. My energy restriction has increased from 30% of perceived capacity to 50% of perceived capacity. Having said that, I had nearly zero capacity this week. 

I've been isolated for so long that my care team is recommending experimental, low stakes “structured social time”, which is a huge improvement from avoiding most people like the plague. Also, I love hearing from people, so please feel free to reach out.  

Money is obviously the top concern for the foreseeable future, but every contribution makes a real difference. Truly. Following my progress on Support Now means the world and streamlines updates.  Sharing the page is another cognitive struggle for me and any reshares massively help. So many folks are doing so many things to help me out while I heal. I'm now seeing how much Minnesotans sincerely love to help each other and it's really heart warming. The neighbor thing is for real. 

Treatments are being extended so I am regrouping and recalibrating. 

Meanwhile, my practitioner is enthusiastic. Their network of licensed Perrin providers say I am having exciting/promising results. I feel better knowing that even my practitioner has a team to consult and direct access to Dr. Perrin if need be.

I am thrilled about my progress, and really optimistic for the future. 

Alysia

PS I will be adding more ways folks can sign up for "experimental social time" and other assists!