Alicia’s EDS Journey

Hi there ♡

I decided to open my gofundme again due to never ending medical bills & the costs it takes to care for me since I am currently bedbound & suffering greatly.

I constantly feel like a massive burden asking for help, but without help I wouldn’t survive.

I had to stop the majority of the treatments that provide me relief due to the costs & lack of caretakers. The majority of the doctors that I see that specialize in my conditions don't take insurance, so appointments are too expensive for me to afford on disability pay. My extreme pain, high brain pressure & debilitating neurologic symptoms are so severe that I spend almost every day in a quiet dark room just staring at the wall. It feels like I’m living in Groundhog Day where everyday is the exact same day of horrible pain. Things like watching TV or being on my phone usually feels too stimulating and painful. I haven’t gotten to spend any time outside since October 2024. I am no longer living , I’m just existing in survival mode.

Here’s a list of the main conditions I suffer from:

List of just some of my symptoms:

Below is a list of things that I would use donations towards:

1) I have a telehealth new patient appointment in September with an expert in jugular vein compression but it cost $600 non refundable to schedule.

2) mental health counseling. I really need to be in therapy but I cannot afford the visits. I was told a specialist that I need to find a therapist that’s experienced with hospice & severe trauma. And right now I can only do home visit appointments. I finally found the perfect fit but her rate is $400 per visit and insurance won’t cover it. I cannot do telehealth unless my health improves & I can handle more stimulus.

3) I need to schedule surgery in Boston to have my scapulas fused. I would need to have the funds to pay for the surgery, post op hospital stay, travel costs to get me from FL to MA (medical flight) & I need to find a caretaker that can go with me for surgery & care for me post op

4) I am currently on a waiting list to see a top surgeon to have a craniocervical fusion surgery (fuse skull to T3). This specialist does not take insurance so I would need to send in my MRIs for him to evaluate ( this eval I believe is $1000 out of pocket), a followup appointment to travel to NYC with a caretaker for invasive diagnostic testing of my neck & brain. And if I’m approved for surgery I would need to pay for the surgery and post op care. I won’t survive without addressing my craniocervical instability because it’s severely impacting my brain stem & overall neurologic function.

5) I need the funds to be able to afford massage therapy. Massages were always the most helpful treatment during my health journey, but I stopped being able to afford them in 2023. I really need to find a massage therapist that does home visits (recommendations are welcome! )

6) I desperately need to find housing. I’m back in Florida but I still don’t have a comfortable home to stay at. I would love to have access to a pool so I can try to learn to swim again which may be good for my muscular dystrophy. I’m also considering a nursing home but can’t afford that & I would need my own room due to being extremely noise & light sensitive.

7) groceries. I use instacart to buy groceries since I’m bedbound- but it’s a lot pricier than regular grocery shopping

8) caretaker/ home health aid. I will likely need to hire someone in the future to take care of me & help with basic duties such as brushing my teeth, bathing me, cooking meals for me, getting me dressed, helping me schedule appointments, reading my emails, paying bills, opening my mail etc. I need some sort of socialization since I’ve been in isolation for so long.

9) medications- I’m on a lot of really expensive medications that my Medicare won’t cover. Last year I had to stop taking some of my meds due to the cost & it has severly impacted my wellbeing.

10) I desperately need to see a dentist and have worked on to fix the damage and nerve exposure from my dystonia. I haven’t been able to go to the dentist in many years. I found a dentist when I was in Boston that was willing to stay open after hours and see me as a patient with all of their lights off since I’m so light and sound sensitive, but I had to move, so it never worked out. (Recommendations are welcome because I need to find someone who is compassionate )

11) Hospital Bills & medical debt- I have not able to pay anything towards my last hospitalization bill back in January.

I still owe money to my pain doctor for infusions that I had back in 2021.

if you read all of this, thank you so much for taking the time. I am eternally grateful for the people who have loved & supported me through this. I desperately want to keep fighting this battle & hope to someday I can have some form of quality of life.

♡ Alicia

Before my illness