Medical Help for Rare Autonomic Disorder

Summary:

Hi! I'm Saba. I'm in my twenties and need help stabilizing my health as I re-apply for disability. This will help me alleviate my immediate debilitating symptoms so that I can function and so that I can, one day, offer my creative gifts to the world.

The situation:

I live with a rare autonomic disorder called anhidrosis that keeps me from regulating my internal body temperature; the symptoms of which include constant dizziness, vertigo, overheating, and the musculoskeletal misalignment that comes from all these issues.

The summer heat, especially the heatwave where I live, is making my life unbearable. I am in a state of chronic heat exhaustion due to my body’s inability to sweat. Living in a home without A/C exacerbates this. On the hottest days this makes it so I am only conscious for 20 minute bouts throughout the day. I am anxious and depressed about my health and overwhelmed by my lack of resources, and the dehumanizing lack of support this government and the western medical system shows me.

While the western medical complex says there is no treatment for what I am experiencing (and that I should live my life only leaving the house at night) I have faith that the more I share my experiences and find support, the more easefully I will transition into a lifestyle that is not dominated by my illness.

What your support does:

Your support helps me with accessing housing with A/C to help regulate my condition & accessing medical treatment that eases the pain of this autonomic disorder until my disability benefits (which I am in the process of applying for) are hopefully approved. I am currently scheduled for the earliest possible appointment with a primary care provider, which isn’t until September, and that appointment is the first step I need to proceed with my disability application and to get referrals for other forms of care. I currently have no income and need to find a way to cover housing, food/living expenses, and at least three months of medical care expenses out of pocket.

If supporting with money isn’t an option for you, I also welcome support in the form of:

Leads for part time virtual jobs. I can do virtual assisting, zoom tech/hosting, digital communications, etc.

Pro-bono holistic wellness sessions or referrals such as energy work, herbalist consultations, etc.

Pro-bono western medical care appointments/referrals

What I’m Doing & My Dreams:

Stepping out of my routine risks a total health collapse, and even then I keep trying to explore other ways to get support, including applying for jobs, asking everyone I know for advice, going from doctor’s office to doctor’s office, asking for help from my community, and doing deep studies of alternative health modalities.

I’ve fought hard for my health, and shifted my physical, emotional, spiritual, and mental reality to fortify it. I know I am strange and lovely and that I have every right to exist peacefully within my own body!

I have dreams of pursuing comedy writing and becoming a practitioner of & reigniting my ancestral medicine line, but even these are tributaries of my one true dream: living a life where every decision I make is a conscious one. When awareness feels like a burden to so many, because I only am afforded small glimpses of lucidity, I am so grateful for my presence.

Please share abundantly with me, and remind me that I, too, can exist in community with you and one day, offer you my gifts in abundant supply.