Hi internet friends
I really hate to do this, it is horribly embarrassing but I’m feeling very desperate and scared
I’m in a pretty desperate situation
As some of you may know, I have a kidney transplant that isn’t doing so well.
It’s functioning at about thirty percent because the disease that made my own kidneys fail (FSGS) is back in the new kidney, and my anemia has also become severe as a result, resulting in me feeling very weak and unwell a lot of the time.
I don’t know where my next kidney transplant will come from, and if I’m put on a waiting list it can take years to find a match, and in the meantime you have to do dialysis, and the average life expectancy on dialysis is horrifyingly low. Thinking about all of this (as much as I try not to) and feeling unwell have caused very severe depression and anxiety of a nature that is hard to articulate.
I’m trying to live in the present but it is extremely difficult, as I’m in a near constant state of existential horror and also it is hard to not think about it when I can feel it in my body in the present.
After months of working full time at my cashiering job and feeling horrible as a result, I went down to part time and decided to apply for disability. The maximum amount of hours I can work while waiting for a decision from disability is 25 hours.
At 25 hours a week and with zero financial support from my family, I am in a very precarious situation where I cannot afford my rent.
My mother lives in a trailer park that is falling apart. There is visible mold in the trailer and I cannot afford to live here for physical and emotional reasons. I take immunosuppressants (drugs that suppress the immune system) every day to prevent the rejection of the kidney, and because of this I am much more susceptible to becoming ill from environmental factors and everything else. Furthermore the house is for sale because my mother can’t afford it, and so she may not be there much longer, and will be downsizing to an even smaller place when she does move.
My father lives in a very small one bedroom apartment.
Neither of my parents are in a position to help me, so they don’t.
The application process for disability benefits has taken several months, as it usually does, as they have to collect all my medical records from all my different doctors, and have their team of doctors make a decision about whether or not I will receive benefits. Many people, even those with chronic diseases such as myself, are rejected the first time they apply, and they must hire a lawyer to appeal the decision in court, which takes several more months.
I am getting a surgery on November 27th and will be unable to work for 4 weeks as I recover.
Not only do I not know how I will pay rent this month ($500), but I also don’t know about the next two months.
I am essentially having to manage a constant nervous breakdown as I attempt to be a functioning person at my job and in society, while balancing the stress of my own health. I also struggle to afford the gas money to make my appointments with my nephrologist (kidney specialist), who is in Boston.
Sometimes it feels unbearable to just get out of bed and go to work. To be a young person with a chronic disease and an organ transplant is horrible enough, feeling constantly alienated from your peers and their ability to plan for (or envision at all) their futures without having to figure in whether or not they’ll be hooked up to a machine for eight hours a day in two years; to have to endure this reality without an emotional or financial support system is literally excruciating.
I want very much want to eek out some happiness for myself before my health declines to the point of dialysis. This would not be nearly as difficult if I didn’t have to worry about how I’m going to have a roof over my head. I literally cannot enjoy whatever relative health I still have because I am constantly worrying. I feel completely and utterly helpless, at the end of my rope, and desperate. I hate to ask anyone for money, especially because I don’t know most of you and many of you are probably struggling yourselves. I feel gross doing this but I don’t know what else to do; I’m sorry. Anything donated will be appreciated more than I can express. Thank you for even just reading this, and reading this blog if you do. I love you all.
update: as of 24 hours after this publishing this blog post, i have received an enormous outpouring of support and donations, and donations are now closed because i can afford to pay rent for the next two months. thank you all for your kind words and well wishes and for your incredible generosity. yesterday from three to four pm i was sitting in a chair across from my therapist sobbing, and i wrote this blog post last night out of complete desperation, and now i am standing in awe and gratitude before all of you. thank you to all of you for spreading the word and for so much love. thank you