What do you do when it all gets too heavy?
\Post02\ 04.14.2024
Y’all! I have been M.I.A. and I’m sorry. Kind of. So this is going to be a long one. Sit down, grab a snack and a beverage (maybe of the adult variety) and let’s catch up.
To say I have been going through it would be a massive understatement. I’ve been so up and down, I’m not even sure what’s next anymore. My health is worse than it was before and it really has me feeling some type of way. I leaned on my boyfriend for support a few times, not nearly enough because I’d hate to be a burden – but me being sick was taking an emotional toll on him… Let’s just say he may not be my boyfriend anymore. Who knows. I don’t know much about anything anymore. This sucks of course because he says, “I love you and I hope you get better. I want you to be healthy”. Then, he beats himself up for “NoT BEinG tHe MaN I deSErve". I HATE THAT. Don’t beat yourself up because I’m sick and it’s hard. If anything, he deserves a healthy, happy partner. Not whatever I am. I’m not the woman he deserves. Who deserves stress and uncertainty tainting a budding partnership? I know the answer to this one: nobody.
The things you fear deep in your mind actually becoming reality is such a strange feeling. Is everything secretly a premonition? Did I manifest this subconsciously? I really thought, “If I can’t be healthy, I can at least be happy”, but the universe threw that back in my face 10-fold. And I’m proven right, for once in my life, that no one can actually stomach (pun intended) being a sick person’s partner. Obviously, this doesn’t apply to everyone, but I sure as hell believe it applies to me. Outside of familial deaths, I’m not sure if I’ve ever been this sad in my entire life. This broken and beaten down. This… hollow. This sad and sick. This sick and tired. This done.
As I was on my way to work one morning, I managed to leave my feeding tube bag uncapped, so my formula spilled all over me, my car, my feeding pump, and my work bag. That was the last straw. After the special kind of hell I had been through the last few months, this is what happens? I had to turn around to go back home and change, clean up my car with a quickness, and make my way to work. I couldn’t do it. “There is no way I’m going to get through this day”, I thought to myself. I immediately called my therapist – she was unavailable. I called my mother – she was in a meeting of course; I asked if she could step away because it was important, but she didn’t understand. What could possibly be more important than her meeting? (Side note: she called me about an hour later, saying she stepped out of her meeting and couldn’t go back in because someone else was doing her presentation. I of course said everything was fine, it obviously wasn’t, so then she began giving me a speech about how I should be more rational and not so emotional. Just what I needed of course.) My friend who I would call was on vacation and my sister that I confide in was at work. The only person left to call was my father.
The things you fear deep in your mind actually becoming reality is such a strange feeling. Is everything secretly a premonition? Did I manifest this subconsciously? I really thought, “If I can’t be healthy, I can at least be happy”, but the universe threw that back in my face 10-fold. And I’m proven right, for once in my life, that no one can actually stomach (pun intended) being a sick person’s partner. Obviously, this doesn’t apply to everyone, but I sure as hell believe it applies to me. Outside of familial deaths, I’m not sure if I’ve ever been this sad in my entire life. This broken and beaten down. This… hollow. This sad and sick. This sick and tired. This done.
As I was on my way to work one morning, I managed to leave my feeding tube bag uncapped, so my formula spilled all over me, my car, my feeding pump, and my work bag. That was the last straw. After the special kind of hell I had been through the last few months, this is what happens? I had to turn around to go back home and change, clean up my car with a quickness, and make my way to work. I couldn’t do it. “There is no way I’m going to get through this day”, I thought to myself. I immediately called my therapist – she was unavailable. I called my mother – she was in a meeting of course; I asked if she could step away because it was important, but she didn’t understand. What could possibly be more important than her meeting? (Side note: she called me about an hour later, saying she stepped out of her meeting and couldn’t go back in because someone else was doing her presentation. I of course said everything was fine, it obviously wasn’t, so then she began giving me a speech about how I should be more rational and not so emotional. Just what I needed of course.) My friend who I would call was on vacation and my sister that I confide in was at work. The only person left to call was my father.
THIS WAS A MISTAKE, AND I FEEL HORRIBLE.
My father asked me what was wrong and all I could say was, “EVERYTHING”.
My father actually called the police that day to do a wellness check on me because he was so scared by the sobs coming from deep within the pit of my pancaked, dysfunctional stomach. Oh, how I cried. I sobbed at what my life had become. On the floor, body shaking, eyes burning, feeding tube moving around my nose. The. Whole. Nine.
Over the last 6 to 8 months I’ve developed new symptoms, began having longer pain flares (sometimes for more than 10 hours straight), lost my prescription for my feeding tube, gained it back again, been turned away by doctors and picked up by them again. I was even told I should’ve gained at least 60lbs by now (I’ve only gained 2 or 3lbs in the last 2 years) and to do more exercise and add more calories. How am I expected to do all of that?
And the worst thing of all: I MET WITH PALLIATIVE CARE. I know what you’re thinking – I’m basically a child (in my mind at least), how can I take that step so soon? Well, I’ll put it like this: I have been fighting for so long, fighting my own demons, fighting the medical demons at the hospital otherwise known as Administration, trying to figure out my diagnosis, and dealing with several unexplained, non-specific findings on tests. There is no cure in sight. Hell, there’s barely any symptom management. The amount of pain I’m in and the weakness and the fatigue is enough to make anyone throw in the towel. SO, that’s what I kind of did. I set up a game plan for if (maybe when – I’m trying to be optimistic but realistic here) things don’t end up getting better in a timely fashion. I haven’t told my family yet, but if there’s no cure, no game-plan to fix whatever this is or lessening of this pain in the next 6 months, I’m stopping all my treatment. I’m going to just let whatever happens happen; I don’t have to tell y’all what’s going to happen. You know. I’ll be hanging out with Casper and them. 👻
After that appointment I went down a rabbit hole. And if I’m being 100% honest (and I will keep it 100 here, that’s what this is for), I have made dissociating from my reality a daily task. It is necessary sometimes, especially when the weight of an illness/disorder/situation/disease starts to become a bit too heavy. Sometimes it is imperative you take a moment to distract yourself from your own reality – to take a break from things crumbling beneath your feet and imagine you’re standing on solid ground again. Even if it’s for a single moment or a few moments a day, a week, a month, etc.
But here I am, repeatedly fighting with doctors, nurses, administrators, insurance companies to say, “Hey! I deserve healthcare – good quality healthcare!” and for them to essentially say, “No, you actually don’t”. I let my (microscopic) social media following know that I actually wasn’t okay, and that I needed time to myself so I wouldn’t be answering any attempts to reach out for a while.
So if you’re my family or friends reading this – I’m still not answering communications right now. I just need time to process everything. I’m probably watching the entire John Wick or Mission Impossible movie franchise or escaping in a sappy book. And no. I’m not okay. Please try to ask me that less often.
To my readers: PLEASE DON’T GIVE UP YET. Keep trying to find answers. Keep arguing with whoever you need to in order to receive quality care, quality help, quality pain management, etc. You deserve to be here. You deserve the chance to be happy and healthy. I haven’t given up yet, though I may be close, neither should you. As always I’m here if y’all ever need to talk.
Anywaaayyyy. I’m going to do my best to be more consistent on here. And I may have given up on TikTok lol. We'll see.
I baked! (please see a photo of my lovely creations on the left.) ✨
Remember: you deserve the world and then some.
Take care xx
My father asked me what was wrong and all I could say was, “EVERYTHING”.
My father actually called the police that day to do a wellness check on me because he was so scared by the sobs coming from deep within the pit of my pancaked, dysfunctional stomach. Oh, how I cried. I sobbed at what my life had become. On the floor, body shaking, eyes burning, feeding tube moving around my nose. The. Whole. Nine.
Over the last 6 to 8 months I’ve developed new symptoms, began having longer pain flares (sometimes for more than 10 hours straight), lost my prescription for my feeding tube, gained it back again, been turned away by doctors and picked up by them again. I was even told I should’ve gained at least 60lbs by now (I’ve only gained 2 or 3lbs in the last 2 years) and to do more exercise and add more calories. How am I expected to do all of that?
And the worst thing of all: I MET WITH PALLIATIVE CARE. I know what you’re thinking – I’m basically a child (in my mind at least), how can I take that step so soon? Well, I’ll put it like this: I have been fighting for so long, fighting my own demons, fighting the medical demons at the hospital otherwise known as Administration, trying to figure out my diagnosis, and dealing with several unexplained, non-specific findings on tests. There is no cure in sight. Hell, there’s barely any symptom management. The amount of pain I’m in and the weakness and the fatigue is enough to make anyone throw in the towel. SO, that’s what I kind of did. I set up a game plan for if (maybe when – I’m trying to be optimistic but realistic here) things don’t end up getting better in a timely fashion. I haven’t told my family yet, but if there’s no cure, no game-plan to fix whatever this is or lessening of this pain in the next 6 months, I’m stopping all my treatment. I’m going to just let whatever happens happen; I don’t have to tell y’all what’s going to happen. You know. I’ll be hanging out with Casper and them. 👻
After that appointment I went down a rabbit hole. And if I’m being 100% honest (and I will keep it 100 here, that’s what this is for), I have made dissociating from my reality a daily task. It is necessary sometimes, especially when the weight of an illness/disorder/situation/disease starts to become a bit too heavy. Sometimes it is imperative you take a moment to distract yourself from your own reality – to take a break from things crumbling beneath your feet and imagine you’re standing on solid ground again. Even if it’s for a single moment or a few moments a day, a week, a month, etc.
But here I am, repeatedly fighting with doctors, nurses, administrators, insurance companies to say, “Hey! I deserve healthcare – good quality healthcare!” and for them to essentially say, “No, you actually don’t”. I let my (microscopic) social media following know that I actually wasn’t okay, and that I needed time to myself so I wouldn’t be answering any attempts to reach out for a while.
So if you’re my family or friends reading this – I’m still not answering communications right now. I just need time to process everything. I’m probably watching the entire John Wick or Mission Impossible movie franchise or escaping in a sappy book. And no. I’m not okay. Please try to ask me that less often.
To my readers: PLEASE DON’T GIVE UP YET. Keep trying to find answers. Keep arguing with whoever you need to in order to receive quality care, quality help, quality pain management, etc. You deserve to be here. You deserve the chance to be happy and healthy. I haven’t given up yet, though I may be close, neither should you. As always I’m here if y’all ever need to talk.
Anywaaayyyy. I’m going to do my best to be more consistent on here. And I may have given up on TikTok lol. We'll see.
I baked! (please see a photo of my lovely creations on the left.) ✨
Remember: you deserve the world and then some.
Take care xx
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