Okay… So Here’s What Happened.

On Thursday, I woke up and I could barely walk. Getting myself to the bathroom was tragically difficult. I had to take a break to lay down, recover and catch my breath from such a short walk. My stomach is slow again, the numbness is back.. my body is falling again apart again. I couldn’t comprehend what went wrong.. I literally relapsed overnight.

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I have no idea why. Nothing out of the ordinary happened, I literally just woke up one day and couldn’t really walk.

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When I struggle to walk, I need to strategically plan out things like how I’ll physically get to the bathroom and get the things I need. I have no energy to spare to get up just to get something to drink, and then sit back down needing to get up later to use the bathroom. That sounds ridiculous and like a waste of the minimal strength that I have. But this also sounds ridiculous to a healthy person. It makes more sense to deal with my thirst until I need to use the bathroom, then I can go to the bathroom, get my drink and then sit down in one short trip. If you’re healthy, you’ve probably never had to think this out. If you need to go to the bathroom, you just go to the bathroom. If you need to get something to drink, you just go do it. That’s just not something that I can do because of my illnesses. I have to think about EVERYTHING in detail before hand. If I need to go out, I need a back up plan as to how I’d get home incase I feel too sick. If I go to school, I need to make sure someone is available to pick me up mid day incase I don’t feel well enough to sit through class. You can’t even begin to understand what chronic illness is like unless you have one. It really hurt that I was moving past all of this.. and now I suddenly need think about my diseases in everything I do… all over again.


On Friday, I found myself at the hospital for immediate treatment. I was at the hospital getting my blood drained into a machine at the very moment when I was supposed to be writing an exam that I was ready and confident about. You don’t understand how much I love school, it was kind of devastating for me. For some people, when your parents ask you how school was, you say it was good and move on. For me, I get excited and tell my parents everything that I learned at school that day. I have always truly enjoyed school, and after getting sick, I’ve treasured it even more. It’s not a problem in the sense that I am able to write my exam on another day, it was more so that my body won and kept me from doing something that I truly love, once again.

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So.. treatment. Yeah. My hematologist said that he’s unsure if Plasma Exchange is even worth it anymore if I’m still not that well. Yes, it got me out of my wheelchair, but he’s pondering if the extreme invasiveness of this treatment is worth it anyway. I personally think that it is. I personally think that this is just another bump in the road and that Plasma Exchange will work. He’s.. he’s unsure of this anymore.


Plasma Exchange for me this week is basically a last ditch effort. I am being blasted with Plasma Exchange for 4 back to back days this week. If it helps, I will do two treatments per week following this aggressive week of treatments. If it doesn’t…. chemotherapy is what he’s considering as a next step. Chemotherapy is what I just couldn’t talk about… I mean CHEMO-FREAKING-THERAPY… Chemotherapy. I’m the type of person who gets hit with ALL the rare and severe side effects from almost ALL the medications and treatments that I’ve tried. It’s very possible that my typical symptoms and my body progressively worsening from a lack of any sort of treatment is safer than chemotherapy. I can barely tolerate low dose Prednisone.. IVIg landed me in the hospital multiple times.. chemotherapy just seems ridiculous. 

I kind of just fell into a depression for a few days. Not in the figurative sense, I mean real depression. I just didn’t want to talk about this. I didn’t want to talk to anyone about anything. I was just in a state of shock and sadness. I finally thought I had treatment that would work.. and my body still keeps falling apart. Hope is a slippery slope for me, personally. I can accept.. I can adapt.. I can cope… but hope just sets me up for disappointment. I had hope. I regret it. I was happier taking things day by day, rather than looking forward to a fantasy future. I fall fast and hard when I have hope. It’s too dangerous for me. It’s what made this issue so difficult to handle. It’s what made it seem like everything fell apart for me. I felt so bad that the inside of my body is just the definition of destruction, and I hate the way that my body looks on the outside due to the steroids weight. It didn’t bother as much before, but just the fact that my body isn’t me anymore on the inside and outside just really saddened me.It’s getting warmer and none of my summer clothes fit me and that frustrated me too. It’s like I’m trapped in a body that hates me – and I can’t get out. My parents took me out shopping and I found clothes that actually fit so it made me feel a lot better. Wearing clothes that are my size and flatter my body made me hate my body a little less. I started to like me on the outside again. It wasn’t even a matter of weight, but rather that I couldn’t identify or recognize my body as my own on the inside and outside. I was just sad and didn’t feel like myself anymore for a few days.

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I feel like me again now though, I am coping a lot better, as you can tell. 

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Today, I’ve completed day 2 of my 4 day round of treatment. I just want to puke my guts out. I can’t even look at food. I have 2 more days to go.. it’s going to be a long week. I’ll get through it though.

I think it would be silly for me to say that it didn’t temporarily break my heart and that I wasn’t sad. I don’t think there’s any point in pretending that I was a warrior though the past few days. I think there’s strength in admitting that you’re sad, not weakness. I think that it’s okay to feel sorrow, because life is full of both sorrow and joy. We’re humans, there’s no use in acting like the only emotion we have is happiness. I don’t think that we should have to solely portray happiness, I think that it’s better to just be yourself and embrace what you’re feeling. I don’t understand why society teaches us that happiness is the only acceptable emotion. I can’t comprehend why society makes us feel like we should hide our sadness or depression. Why must we hide our emotions? Why must we feel like failures for being upset? We’re not. It’s okay to be sad sometimes, though wallowing endlessly in your misery is something else. Life happens, we need to face it, to feel the pain but we still must find a way to adapt and overcome it. Some situations we cannot change, but it doesn’t mean that we can’t change the way that we handle them.


Anyways, with chemotherapy… I will cross that bridge when I come to it. There’s no point in contemplating it now. Whatever happens, I’ll be fine. Perhaps not physically, but I have a wonderful support system who would do absolutely anything to make me happy. I have the most incredible parents and boyfriend. Whatever happens, I know I’ll be okay.



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