Help Me Pay My Medical Costs!

Hi, I'm Lisa. Most people I know met me as a filmmaker, a consultant, or a community aid organizer, but for the past few years I have also struggled with chronic illnesses that got a lot worse after an unfortunate car accident. I know people are curious about that one, so: I was rear ended by a young driver still learning the road.

I've always tried to give back to my community through acts of service, donations, or community organizing. I've donated to local schools, volunteered for local refugee relocation programs, and helped how I could. I've been a mentor to young filmmakers from the moment I could, a practice that I kept up for many years until recently. When the Pandemic started, I became a community organizer to help communities make and distribute PPE to hospitals and essential workers. And, during summer 2020, I created and ran a free two month long film learning program for students whose internships were canceled so that they could still get valuable experiences. Shout out to my filmmaker community for guest speaking!

After the car accident, I got affected with ME/CFS. My body is very inefficient at it's processes, and constantly in a state of fight or flight. This aggravated my body in many ways. I declined during the pandemic chaos, as well; it took a lot of energy and my body began to fade. Unfortunately, with ME/CFS, once I have a major health crash I might permanently be at a lower baseline and lose mobility.

I had to slow down my volunteering when my chronic illnesses grew to a point where I couldn't sustainably volunteer like I used to. But, when I could, I would still advocate online and at work (like by writing articles about disabled experiences).

I was diagnosed with disautonomia and a heart condition. Shortly after I was diagnosed with a connective tissue disorder that means I constantly dislocate multiple body parts and they cannot stay stable. My body severely reacts to histamines, my doctors suspect (as do I) that I have Mast Cell Activation Syndrome (MCAS, basically an allergy to everything) and I am pursuing a diagnosis. I am still in progress to diagnose the underlying cause of a few symptoms; it takes a lot of time, specialists, and money to get care. Every time I leave my house, I have a health crash and need a week to recover. I currently get nurse care at home (which is covered, thank goodness) and constant IV infusions to help me stabilize. But, unfortunately, if I crash again and can't recover I might need even more care like a feeding tube or to be in a care home.

To give a sense of scale of my decline for those who don't know me, I used to be a runner. I'd run along the beach, a 6 mile stretch at a 7:30 minute mile average. Now, I am primarily bedridden and unable to tolerate light for very long, sitting up, or doing the things I used to love. People with ME/CFS have a lower quality of life than people with many types of Cancer, or in renal failure... it's really terrible to feel locked inside a body that can't move or else I'll crash even worse. The documentary "Unrest" shows what it is like, and the future for me does not look bright unless I can rest. I am in charge of my own care; no partner or spouse to take care of me. Just me, with my major illnesses trying to navigate the medical system.

Recently, I have declined to a worrisome point. I have a job working remote as a consultant, but it has become too much for me to be able to do on top of managing my illness. Managing my conditions is basically a full time job on it's own, haha. I need rest, and luckily, I am able to take a Leave of Absence and keep my benefits so that I can recover. My doctor wants me to take 6 months off so that I do not slip to a lower baseline. The only thing between me and this lower baseline is REST for my body. I'm really scared about how bad my health is... I do not want to crash again, I want the chance to rest and stabilize. I want to be able to see my garden, create art, and be involved in my community through advocacy.

I'm currently in bed lying down for 20-22 hours a day. I never leave my house except for doctors appointments. I feel lucky if I can sit on my porch to feel the fresh air and see my garden outside. I can't cook or clean and need prepared foods that fit within my allergy restrictions (and boy are there a LOT of those!). I hire house keeping help; they aren't currently covered by insurance. Neither are the increased food costs that fit my dietary needs, delivery for all things, and paying for services most people can do themselves. I also take many supplements highly recommended by my medical team that greatly increase my Quality of Life, but aren't covered by insurance.

There are also a lot of medical therapies that are INCREDIBLY helpful, that are not covered by insurance. Massages help my tight muscles relax so that I can tape them back into place and my joints dislocate less. Compression socks, heat therapies, and ergonomic tools allow me to keep my independence.

All of these cost money, and it has been a struggle to pay for them. I had a medical assistant who helped schedule things, but I could no longer afford her help at $50 and a lot of time navigating a complex medical system to get care. My care has suffered because of it, but there's nothing I could do about that. I already have enough medical debt outstanding, and I needed to focus on the necessities. Earlier this year, my electricity was turned off due to nonpayment, and things like that are far more immediate needs.

Now, I am forced by my body to take time off work. I do have benefits that will support my initial time off, but it will not cover the entire time off. If I cannot fund my care needs, I will be forced to return to work. I am starting this go-fund-me to pay for more of those 6 months off that my doctor says I need for a chance to recover to a baseline where I can have a much better quality of life.

I put the initial goal at $10,000 as an estimate of what I would need to get a bit closer to the 6 months, but the honest answer is I haven't had the brain space to calculate what I will really need. Especially to calculate what Go Fund Me fees will be taken out, and what will be left. I already know that it's not enough to take 6 months fully off, but, if I can buy some time to figure out a better plan, I will be able to rest instead of worrying about returning to work prematurely. Goodness, disabilities are expensive!

If I make my goal, I will increase it and keep it open. Anything over the goal will pay for more rest, or more medical therapies that could allow me to get the most out of my time resting, or pay off some medical debt that is following me. I've been drowning in bills and it's been incredibly difficult to juggle it all, anything helps.

If you'd like to see an idea of the kinds of things that can help disabled people that aren't covered by Insurance, here is my wishlist. There's a lot of fun band aids on there if you're looking for ideas for your own first aid kit :) I always try to find the joy in life, and there are a lot of ways I've found joy in my disability management and care.

I've never written one of these for myself. I hope this works, and makes sense. It took me a long time to create it. If anyone has suggestions please let me know!

And, if you could please share this link with people you know, I would really appreciate it <3 Thank you so much for reading, and for the support! I will post updates here when I can.

update 8/29/23: increased goal to $16,000