Hi! My name is Ali and I am currently struggling with all aspects of life, but especially with ongoing medical costs. I‘m already diagnosed with a few conditions - namely Classical Ehlers Danlos Syndrome and Autism Level 2. Unfortunately, I don’t qualify for any financial aid and SSI/SSDI is not an option for me (thank you asset and marriage restrictions eye roll). My insurance is very nice, but it doesn’t cover nearly enough.

I have multiple appointments per month as well as medications, diagnostics, labs, equipment, etc. I feel like I'm drowning in capitalism lol. Any amount truly helps!

I have not kept up with updating underneath, but it's way more than this now. I will also have an additional $4000 that was sprung on me due to a formerly covered procedure going out of network if I cannot get financial aid from the infusion center.

-------------------------------------------

What I Have to Pay Off (Jan 2023 - August 2024) – $5,400

• $400 – sleep study (2023)
• $140 – primary care appts (7 @ $20ea)
• $520 – specialist appts (13 @ $40ea)
• $90 – rheum (specialist) appt with FMLA paperwork (1 @ $40ea + $50 fee)
• $140 – psychiatrist appts (7 @ $20ea)
• $820 – therapist appts (41 @ $20ea)
• $0 – women's health appt (1 @ $0ea)
• $1914 – weekly infusions (58 @ $33ea)
• $600 – yearly deductibles [required to pay before receiving services]
• $80 – adhd diagnostic appt
• $300 – ASD re-eval for accommodations and insurance
• $396 – monthly medications (14 @ $21ea pick up, 6 @ $17ea pick up)

Upcoming Doctor's & Medicine Costs (Sept - Jan 2025) – $6,873-6,953

• $40 – primary care appts (2 @ $20ea)
• $80 – specialist appts (2 @ $40ea)
• $6000 – MRIs (3 @ $2000 currently an estimate)
• $20 – psychiatrist appts (1 @ $20ea)
• $80-160 – therapist appts (3-7 @ $20ea)
• $495 – weekly infusions (15 @ $33ea)
• $68 – monthly medications (4 @ $17ea pick up)
• $90 – rheum (specialist) appt with FMLA paperwork (1 @ $40ea + $50 fee)

will update with Aug 2024-Jan 2026 soon

Upcoming Doctor's & Medicine Costs (Jan - Mar 2026) – $1262

• $400 – yearly deductible [required to pay before receiving services]
• $212 – echocardiogram coinsurance
• $500 – holter monitor coinsurance (unknown amount but probably close to $500)
• $80 – specialist appts (3 @ $40ea)
• $70 – primary care appt with accommodations paperwork (1 @ $20ea + $50 fee)

What I Need Soon – $328

• $328 – SmartDrive roller replacement kit [my current rollers are worn down and I have put this off for too long]

None of this takes into consideration my lost wages from missing work due to my flare-ups. I’ve lost about 1000+ hours in the last three years, but I’ve made it work and will find my own way to make up those hours 🫶🏼

LAST UPDATED: 27TH JAN 2026