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Living with a Chronic Disease

by NJ Bell 3 years ago in health
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My Story

Dyed Mast Cells Under Microscope

I have an autoimmune disease called Mastocytosis. It’s one of those rare, hard to diagnose and even harder to diagnose, diseases. Basically, it is caused my body having too many mast cells, which have to do with allergies and so on. A case of too much of a good thing being a bad thing. Literally, the only way to treat it would be chemotherapy to get rid of the mast cells, but my hematologist/oncologist thinks that chemotherapy would ruin my life (or at the very least be a bad option) considering that I am only twenty.

I’ve had to think about fertility issues and whether suffering now for the opportunity to have children is the best option for me. I’ve also been told that due to a clotting issue (as in my blood either clots to well or not at all at random intervals) that the doctors cannot find the cause of, I have a high probability of miscarriage and of dying from a miscarriage. This is a lot to think about, and while I am in no way ready to have children, the idea that I may never have any is also physically painful. Don’t get me wrong, I fully know that I can adopt, I guess it’s just one of those “want what you can’t have” things.

This disease dictates my entire life, ranging from what I eat, to what I can realistically study in school. I used to want to be a chemist, specifically focusing on pharmaceuticals and biochem, but that is no longer possible because I can’t sit through long lab periods or attend class every day. I get tired super easily and sometimes only wake up to eat and take medicine before going back to sleep for the rest of the day. So instead, I am taking mostly online courses and trying very hard to get a degree in English, focusing on editing. I have also taken a few creative writing courses, and people seem to like my stories, so maybe I will try to make it big as a writer. I just am trying to focus on getting a job where I have a somewhat flexible schedule and therefore can work when I feel good and can sleep when I don’t.

In a way, I am using school to avoid “real life.” My dad gets frustrated that I am not trying hard enough, and that I am accepting the way that things are and becoming complicit. He thinks that I should be taking those chem classes where I was miserable and in pain. He doesn’t think that I have any limitations except for the ones that place on myself. He just doesn’t get it, and I can’t make him understand. When I try, he gets upset and starts crying, which means that I get upset, which leads to my symptoms flaring up. It is just easier for me to not try anymore.

Those limitations lead me to be unable to hold down a job, which means that I’m totally dependent on my parents. That was why, in part, I was so excited when I learned about this site. I hope that I can make some pocket money while lying in the comfort of my bed. I can easily type a few words about my experiences, publish a work of fiction (does anyone know how to do that, I couldn’t find what community it would belong to), and earn some cash.

If people seem interested in my experiences, I will continue to post more. I have experience with traveling while sick, taking an ambulance ride from school, bullying (students and teachers). If nobody seems all that interested, well I guess this post was a quick and cheap therapy session for me to rant on the internet.


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NJ Bell

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