Last year my mom was diagnosed with an autoimmune skin condition called pemphigus vulgaris which causes her skin to break out in painful blisters. Right when she was about to start the infusion treatment needed for it, she broke two ribs during a fall and suffered a severe loss of mobility. The pemphigus was brought under control with prednisone while she spent six months in two nursing homes for sub-acute rehab to regain her strength and mobility. She was able to come home in October but, unfortunately, at the start of this year her skin condition flared up again. This time it was unresponsive to prednisone and caused her severe pain.
I had to take my mom to the ER on July 16 because she had not been eating or drinking and couldn't move from the pain. She was admitted in the ER and from there she was moved to Lenox Hill Hospital and then to their ICU. The Lenox Hill dermatology department thought her skin was severe enough that she needed to be moved to a burn center to receive more intensive wound care.
She has been at the burn center in New York Presbyterian's Weill Cornell Medical Center since July 18. I have been told that upon admission 15-20% of her body had open wounds.
While the ideal would be having Mom at home, she is definitely where she needs to be and, finally, getting the comprehensive care she needs. She is receiving extensive wound care, has started the infusion treatments she needs for the pemphigus, and is being seen by palliative care for pain management among others. She had a setback on the 25th when she had a seizure in the hospital but having been dealing with seizures for years I'm hoping she'll finally get the treatment she needs for that as well.
We are both taking it one day at a time and I'm giving our dog Bella lots of extra hugs and pets to make sure she doesn't feel too bad while missing my mom at home. Getting to the burn center to see Mom is hard. I have to travel uptown and cross the entire island to get to her, but I'm making it work. At the end of the month after using two weeks of vacation time (the only absence time I currently have), I tried starting to go back to work which has been hard in its own ways. My last July paycheck shorted me for 28 hours of work time. My library system migrated to a new payroll and finance system and the rollout has been riddled with problems. Everyone agrees I will get the money I am owed. No one can agree when. I am trying to work with HR to restart FMLA (family medical leave) so I will at least have more time to use to be at the hospital, but that will also see a reduction in pay whenever I'm able to start it.
I recently went through my expenses for 2024 and between food, medical equipment, and medical supplies not covered by insurance I spent $10,000 in emergency expenses in 2024--most of which I am still carrying as credit card debt. Every time I try to budget to plan ahead this year I have run into setbacks including the payroll issues at work with delayed checks and work time that was not paid out properly. And now that my mom is hospitalized again, I am anticipating more emergency expenses coming through.
I am trying to get Mom all of the support she needs and manage her care while also taking care of Bella, the apartment, and myself. But it all takes time and so much of it costs money whether it's transportation to the hospital, groceries, supplies Mom needs at the hospital, or figuring out how to make up this missing work payment.
Whenever I talk about everything I am dealing with for my mom's care online, people have expressed concern and some have asked how to help. It feels weird to be asking for anything when there is so much worse happening in the world, but if you are able and inclined I have started this Go Fund Me to try and offset some of these emergency expenses.
I currently have $15,000 in credit card debt--mostly from these emergency expenses. I'm hoping to raise $7,000 here to be able to pay off one of those credit cards so that I can have one for future emergencies and to also save $300 a month in minimum payments and interest. Any money raised here will go toward paying down my debt so that I will be more financially stable for future emergencies.
If you have ever asked me how you could help, if you've ever appreciated one of my reviews, blog posts, or social media posts, if you have ever been grateful for one of my tarot readings and wondered how to support me, I would so appreciate you donating or sharing.
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Organizer
Emma Carbone
Organizer
New York, NY