Payton C. on June 8, 2022
I was diagnosed with ALL at 16 years old and finished treatment and college at 19. I know I should be happy that I have been in remission for so long and I am, but I feel that everyone thinks that I should be normal now. The treatments left me with a slew of chronic illnesses, and I have some that aren't related but they don't help my situation. My biggest issues are my labs and my endometriosis. I had some labs Friday which are the only real way to know if it's back or not considering the signs and symptoms are my everyday life (paleness, loss of appetite, chronic fatigue, bruising, weakness, and shortness of breath). My labs were borderline which my doctors told me my labs and immune will never be normal again when I was younger. I deal with chronic anemia, sleep for 12-20 hours on my off days, and get sick very often. Even though my labs weren't super low Friday by yesterday I knew they had dropped because I was so weak and freezing. I had my house set to 77 F with hoodies and thick blankets to warm me. I finished the last of my endo treatments this spring and have no options other than more surgery, so my endo is flaring as well. All in all, I felt terrible. I am a private duty nurse, so I stay with the same kid 7-7 fulltime providing care. It is a rotating schedule, so it is supposed to be 3-4 days per week if there is another nurse working opposite of me. I texted the other day nurse to see if she could cover today and she couldn't due to appointments for her kids and our company doesn't have any PRN nurses, so the father had to cover my shift. I feel terrible because they depend on me so much, but this happens all the time. The other day nurse (before this one) would call out frequently and I end up work OT stressing myself out and then I get sick. The family is so nice, and I love my patient with all my heart, so I hate disappointing them but at the same time I don't want to go in feeling this weak and fall asleep driving or pass out while no one is home and my patient not have care. The family knows my medical history and is understanding but at the same time sometimes I feel that they and others see me having a "good" day (can go for a run or go to the gym) and feel that I'm exaggerating on my bad days. The only thing that makes me think that is that the father constantly tells me to work nights and go back to school for my RN or BSN. I have all of my prerequisites for them, but my health got worse and worse, and my father got AML at the same time. I emptied my savings caring for him in a year and even if I had the money I can't because of my health. I want to continue to be a nurse for as long as I can but when we move next year, I may switch to part time. I also need to find something to do from home. I've thought about going back to school for a different field but every time I start to look into it, I get sick. I do online surveys when I'm stuck in bed, but it only brings in a couple thousand per year. I split the bills 50/50 with my husband and even though I know he'd take care of me financially I don't want him to have to. My first quarantine when I was 17 drove me insane. I tried crafts but that didn't work. I may be weak, but I still want and need to do something. I want to contribute to society and help as much as I can I just don't know what to do. I just feel like I am stuck and a) wish that people would understand how my health fluctuates more and b) need to figure out how my career path can work over the next few years.
Thank you and I'm sorry if I rambled it's a lot and I'm so upset