- D
The hardest part of being sick isn’t the pain—it’s watching my kids lose pieces of their mom and my husband watch helplessly as my health deteriorates. My kids deserve a mom who can get out of bed, show up, and live—and I’m fighting every day to be that mom again. My name is Tullie, and I am living with chronic illness—Ehlers-Danlos type 7, possibly mosaic Edwards syndrome, and severe autonomic dysfunction. In early 2022, my world changed when I became completely disabled. Since then, every day has been a fight to hold onto hope. My husband works over 50 hours a week just to keep us afloat, but the medical costs are overwhelming. While we manage the basics, the reality is that ongoing medical expenses are simply not sustainable for us.
Recently, I was accepted into a county health program, which has finally given me access to the care I need on a sliding scale. But my condition means I cannot drive, so I rely on Uber to get to and from my many medical appointments. Social work has helped with some transportation costs, but the support is limited and the expenses are quickly adding up. I have referrals to cardiology, neurology, rheumatology, genetics, GI, occupational therapy, physical therapy, and medical rehab, with more on the way. Many of these treatments, like PT and OT, will happen multiple times a week and are over an hour away. I am also working toward receiving IV fluids weekly, which is another significant expense.
I am incredibly grateful for the village of people who have rallied around me—friends, family, and social workers who work tirelessly to help. But I see the toll it takes on them, and I want to lighten their burden. The funds raised here will go directly toward copays, specialty diagnostics, genetic testing, medications, trial treatments, rehab services, transportation, and basic living expenses while awaiting my disability hearing in a few months. Each new specialist brings new tests and treatments, and the costs are ongoing. No one should have to weigh the cost of an Uber with the chance to get better. The goal that matters most is giving my kids their mom back. Thank you for your support and for caring about my little blip on this earth.
Recently, I was accepted into a county health program, which has finally given me access to the care I need on a sliding scale. But my condition means I cannot drive, so I rely on Uber to get to and from my many medical appointments. Social work has helped with some transportation costs, but the support is limited and the expenses are quickly adding up. I have referrals to cardiology, neurology, rheumatology, genetics, GI, occupational therapy, physical therapy, and medical rehab, with more on the way. Many of these treatments, like PT and OT, will happen multiple times a week and are over an hour away. I am also working toward receiving IV fluids weekly, which is another significant expense.
I am incredibly grateful for the village of people who have rallied around me—friends, family, and social workers who work tirelessly to help. But I see the toll it takes on them, and I want to lighten their burden. The funds raised here will go directly toward copays, specialty diagnostics, genetic testing, medications, trial treatments, rehab services, transportation, and basic living expenses while awaiting my disability hearing in a few months. Each new specialist brings new tests and treatments, and the costs are ongoing. No one should have to weigh the cost of an Uber with the chance to get better. The goal that matters most is giving my kids their mom back. Thank you for your support and for caring about my little blip on this earth.
Organizer
