Medical Relief for Stacey Fuller

2018 was the year for my medical odyssey, I needed answers. My body kept failing me and over the years, I kept getting injured - there had to
be an explanation!

So far, I've been diagnosed with two rare genetic conditions:

Ehlers-Danlos Syndrome (genetic testing is currently underway to determine which type) and Hereditary Angioedema

Additionally, I've been diagnosed with:

Trigeminal, Geniculate, and Glossopharyngeal Neuralgia
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Mast Cell Activation Syndrome
Thoracic Outlet Syndrome
Dysautonomia
Small Fiber Neuropathy

The medicine I need for Hereditary Angioedema costs, without insurance, over $48,000 a month. Plus, the emergency injections are $12,000 a pop. That's in addition to the almost $200,000 a year infusion costs to help combat CIDP. Thankfully, through my job, these costs are covered 100% after I meet my yearly out of pocket max of $3,000 - which I'll need to pay every year for the rest of my life.

On November 26, 2019 I'll be undergoing microvascular decompression to hopefully relieve the pain from my cranial neuralgias. This procedure is a type of brain surgery and will be done by one of the best surgeons in this rare field, Dr. Linskey. I'll be traveling to California for the procedure and will have to stay in the area for two weeks post-operatively. 

With traveling for treatment, costs increase. Hotel stays, car rentals, airline tickets, pet sitting, food, etc... all add up quickly. Thankfully, I have voluntary insurance plans to help pay back a portion of the hospital stay (approximately $1,100). However, the upfront costs are struggling to be paid. 

There's also a doctor, who is out of network, in Seattle who I've been referred to for treatment. Supposedly, he is one of the best doctors to help with Ehlers-Danlos Syndrome, especially those of us with neck issues (due to my joint laxity, I have cervical instability that may be causing spinal cord compression). I need to have a consultation with this doctor prior to surgery to insure my neck will be able to handle the stress. An initial consult will cost between $200 - $450, depending on how in-depth the appointment is, plus any additional follow-ups. After I meet an out of network deductible of $750, the visits will be covered at 60%.

Anyone who knows me, knows I never ask for help financially, especially of friends, but I'm at a point where I don't know what to do. I'm still trying to get caught up from last year's bills and this years.  To help myself, I've picked up hours to work with Instacart on my days between flying and while flying, I have been working online as a transcriptionist and website tester. I'm a firm believer that where there's a will, there is always a way.

Since I needed to decrease my hours worked last year for medical reasons, my salary was just under $17,000. Coming up with $3,000 a year is a hard enough feat, yet alone trying to add costs to get surgery out of state. 

I'm trying to raise enough money to cover remaining costs from last year, this year, and if I'm lucky enough, next year, all in addition to covering costs for the surgery in November. 

2020 looks like I'll be having two surgical procedures on my arms to fix my hands/arm pain. My wrists and hand bones dislocate easily due to EDS and are causing more peripheral nerve issues. Each procedure will need 6 weeks of post-operative recovery/rehabilitation - this hand surgeon just recently dropped my insurance provider so, it will be out-of-network as well. 

Doctors already say I should never run again or do another triathlon, many even scold me for being a flight attendant still and for having dreams of running again. My life has dramatically changed since being diagnosed and I'm trying to find a way to be the best "me" I can within this new version.

These funds will help alleviate the financial burden of surgical and general medical costs. With this stressor relieved, I'm hoping to continue working full-time, as long as I can, and pursuing other endeavors that focus on utilizing my biology degree. 

If you can't help with funds but still want to help, here's how:

Pet sitting - anyone available Nov 23 - Dec 1 that could stay at the house and have endless amounts of cat and dog snuggles? You'll have my car as well. (I believe this is covered!)

Jobs - any connections for jobs I can do online until I'm ready to quit or an amazing part-time gig in the biology field in the Seattle area to see if I like it?

Nonprofit - Do you have experience starting up/running a nonprofit? I’ve been trying to start one and it’s been on the back burner while I deal with my health. Any help you’d be willing to volunteer so I can get started would be appreciated! 

Support - Emotional needs are super important! If you’re good at listening and creating coping strategies, I’d love help! Anything to help me brainstorm new activities instead of running, healthier coping mechanisms, and setting life goals is always welcomed. However, please do not support in the way of saying: “everything will be okay,” “you’ll get better soon!” “At least it’s not fatal,” etc... no one knows the future. I’m hopeful I’ll make improvements, but I’ll never “be 100% better.” Many of these are with me for life.