A clip of a part of the book 📖 I’m writing :
Above all, though, I noticed how my healthcare went from bare minimum, to next to nothing.
And of course, my health issues started to get worse and new things began to pile onto it all.
I eventually just stopped going to the ER & I realized that I absolutely was being treated terrible deliberately.
Like it was all this amusing game to see how much I could take before I snapped and everyone was taking bets behind the scenes on what thing was going to take me out first and by when.
It made me sick to think about that even being a SLIGHT possibility.
But recently, I found out that a lot of things I had been dismissed on being a possibility of having..are now an actual thing.
As I am writing this, I am trying to get to the bottom of why I have been randomly hitting the floor.
In 2014, I was diagnosed with having POTS & Dysautonomia. (I’ll leave it to you all to do your research on this.)
This made me intolerant to heat, getting dizzy when changing positions quickly, etc. I managed to deal with that pretty well once I understood the warning signs of pre-syncope.
However, recently in the last year and a half now, almost everything that I do has become a trigger and I’m finding myself having to sit down in some real awkward moments and places to prevent passing out.
I’ve also had this “mystery” water retention of massive amounts that no one has seemed to clue me in on. (Go figure)
That’s been going on for years now and the solution that was given to me was Toresimide twice daily.
As if my situation wasn’t already restrictive enough, now, they wanted me to be tied to the fucking toilet, peeing every 3-5 minutes.
Now, you tell me how you’re supposed to hold down a job or anything for that matter, when you’re constantly peeing and trying not to pass out all damn day?
The result? I weighed 230lbs in 2021 because I chose to work doing DoorDash and Dog sitting as best as I could, instead of taking the medication.
I literally felt like I was drowning inside of my own body, every single day. I was so uncomfortable. My face was swollen, my arms, my stomach, my legs, everything!
Then, all the doctors told me was that I needed to lose weight. Well no shit!
I then started having stupid high blood pressure because of all the water retention, and when I made an appointment with my (then) primary care doctor to discuss my blood pressure, this man looked me in the face and told me “it’s not high right now, so I’m not going to put you on anything”. . What?!
He then proceeded to tell me that I was getting too difficult for him to manage and then “politely” said he’d recommend an internal medicine doctor because they handle “all of that”.
When I asked if he could then recommend one or refer me to one, he told me he didn’t know anyone. When I asked if he could look someone up or ask one of his colleagues, there was just this awkward look and at that point, I just got my things and walked out.
Not long after that, I received a letter in the mail informing me that he’s terminated our patient to provider relationship.
I definitely spiraled for the rest of that year, badly. I just couldn’t comprehend what was happening to me. I couldn’t understand why I was being treated so badly by everyone. I just couldn’t handle it all.
I went on a good six month alcohol bender, and I absolutely had no desire to continue living. I wasn’t doing anything to hurt myself, but I just wasn’t taking care of myself. I didn’t see the point anymore, you know? It was like, “Okay, if they want me gone so bad, then fuck it. Why should I care when obviously no one else does?” type of mentality.
I was on full-out “Fuck it!” mode. I mean, after 15 years of the bullshit…I’m honestly surprised I didn’t reach that point long before then. I’m not going to continue to rag on myself about my unfavorable choices because, let’s all be honest with ourselves…we make questionable decisions under terrible circumstances.
If you have been lucky enough to never experience this situation or these feelings, wonderful, I hope you’re not passing judgment, because at any moment, this very story could be your own.
If you were someone who was benefiting from this momentary lapse in my judgment, I hope you enjoyed yourselves while it lasted.
If you were hurt, I hope you forgive.
If you were wishing I never bounced back, thank you for your fueling my come up.
If you were silently rooting for me, speak up now.
The fact of the matter right now, is that while I have spiritually grown and healed & I have mentally and emotionally grown and am healing, I am still very much physically struggling because I cannot get the truth and clarity on my own health.
I’m physically doing worse than ever before, and I feel as if I cannot trust healthcare providers anymore. It’s like everyone is guilty now until proven innocent.
The deception is at an all time high, and I cannot fight through it all on my own. I need others who are physically here to help me fight for the truth. I need others who can also clearly see through the illusions and bullshit, who aren’t afraid to stand up against them.
There should be absolutely no reason why I am having chest and heart pain for a year without anyone giving me an explanation and solution.
There should be no reason why I am not given adequate pain management after a surgery.
There should be no reason why after 16 years, no one can give me a definitive answer, explanation and solution to my symptoms, conditions or results.
I’m gonna channel Kanye here and say “16 years with no definitive answers or solutions? That sounds like a CHOICE to me”. Point blank.
I cannot understand why collectively, Three world renowned hospitals cannot tell me what it happening with my body and what the solutions are to the problems. I cannot understand why I do not have a team that is correctly and closely managing each and every part of my health issues.
That seems like a choice to me.
I should not have to repeatedly be groveling for my basic needs to be met.
I shouldn’t be dealing with constant chest pain.
I should not be trying to figure out what this 6mm mass in my head is, while I’m randomly hitting the floor without warning and having worsening head pain.
Yes, my MRI I had from hitting my face in February of 2022 showed that I have a mass in my head that was called either a tumor or some calcified something. Again, guesses. I literally have no DEFINITIVE information about my health. No further research on this is happening. I’m being told this is “no concern”, but given my past history of things that shouldn’t be concerning now becoming a concern, I’m not very put at ease.
How do we know that this is “benign” or not? Oncology hasn’t been consulted and I haven’t been seen. Everyone is just assuming that it’s nothing. . Regardless of my worsening symptoms.
As if that wasn’t enough, I had an Echocardiogram done that originally showed on the report that I had “concentric LVH” , but it was then edited by the ordering physician and that part was then removed from the report.
When I messaged the physician asking about it, he responded with “I see no mention of concentric LVH on the Echo report. No concerns at this time. Hope this was helpful.”
Even though having concentric LVH would absolutely explain my chest pain and symptoms that I’ve been repeatedly expressing and being ignored.
It’s an absolute shit show.
I mean, what was the purpose of removing that? If it was of no concern, then why not just leave it alone? Now, it looks mad suspicious.
I don’t know who I can go to or trust with this. I have the physical proof of the original report and the edit one, but I just don’t know who to turn to.
Beyond that, I am really seriously struggling. My body just doesn’t get a break from anything and I need to reserve my energy for myself and my healing as much as possible.
However, I also need to fight for my life.
Anyways, I know this is a lot, but it’s my truth and it’s what I am dealing with.”
And the story is literally unfolding in real-time. So…to be continued. . .