Hi My name is Bukola. This year has been pretty rough for me. I’ve been pretty unlucky this year because I’ve had many Sickle cell crises but during my last crisis I was stuck in the hospital like usual and if you’re familiar with PTO(paid time off)you know that it’s really easy to run out of that if you don’t have a lot. Well I’ve used ALL of my PTO days (which combines sick and personal time) on health related issues such as visits to the ER and hospital stays.

I used to take the chemotherapy medication which helped for a bit until it gave me unbearable nausea so now I’ve switched to a new med called Adakveo which is proven and for my case medically necessary to reduce the frequency of pain crises in patients with sickle cell. I’ve also upgraded to taking hydromorphone (dilaudid) for pain because the Percocet doesn’t manage my pain like it used to.

I can’t even count how many crises I’ve had on my hands this year so far.

As I mentioned last I am working but I work for a nonprofit and they don’t pay well enough for me to pay rent/bills and manage my health.

Anyways I brought up PTO earlier because I’ve literally run out and I reached out to HR and they said

“Hi Bukola,

I hope this finds you well! I just wanted to let you know that although NY state does not have paid medical leave for your own serious health condition it does have paid disability leave, but it's ridiculously low and the first week of the leave is unpaid. Subsequent weeks are capped at $170/week up to something like 26 weeks. Just some more information for you.”

My anxiety shot up the roof reading that. I have no idea how I’m gonna be able to afford to pay rent if God forbid I’m sick every month forward like I have been the past 8 months.

Despite HRs response above, I’ve decided to take that medical leave but it’s just not sustainable on that income given that it doesn’t even cover half my rent/utilities.

I’ll be honest here. I don’t think this world is fair. At my job there are patients with sickle cell whose parents point to me as a possibility for their kids. I feel like I’ve failed them because I’ve been so sick and can’t manage my health or wealth. It sucks because I just want to be happy and have fun like everyone one else. But I am constantly reminded that I am not like everyone else.

all this is to say, if you can spare anything please do. A dollar goes a long way.