western medicine

While pouring my son cereal…

~ gypsy116toast2001 ~ Leave a comment

I know that I have been MIA. I’ve had a life circumstance that I have not wanted to discuss publicly. I am still unclear on when, if ever, and what, if anything, that I will want to share. What I will say, is that I’ve had a recent hospital stay (nothing for anyone to worry about, with any luck the situation has now fully been resolved. If you would like to send any kind of positive energy that that is in fact the case, it would be appreciated) and it’s got me thinking.

I’m feeling curious about communication. How much of what a person “hears” you say is only their interpretation? How much is what they actually heard you say? Your actual words?

During the interview with the doctor at the hospital, the one where they take the “history” of the presenting problem, I had mentioned getting my son breakfast. While looking through the after visit notes in MyChart, I saw that the doctor had written that I had said, “while pouring my son cereal”. I most definitely did not say that. My son has never even tried cereal. That is something that has met full on rejection at anyone’s suggestion. What I did do was put peanut butter and syrup on a chocolate pancake (Kodiak cakes) that his dad had just finished cooking and mixed up his electrolyte/multivitamin/magnesium/mineral concoction that we refer to as “juice”.

There were several other discrepancies too but none that stood out as so blatantly not what I said. I’m not upset about it, it’s not the doctor’s fault, this is how brains work, right? She heard getting breakfast, getting breakfast to her means cereal, in her memory her brain translated my words into pouring cereal, yeah? But it is a bit disturbing.

As someone who has been severely mistranslated in the majority of conversations I’ve had over my life (I’m not joking, nor being hyperbolic. If I’m not talking to someone who is very close to me, there’s a very good chance that I will be misinterpreted), I wonder how much of what we humans hear other people speak is our own translation? Also, I wonder if this is something that neurotypical humans are particularly bad at? Or maybe it relates to the double empathy issue? Like are neurotypicals more likely to mishear, i.e. hear through they’re own experience, a neurodivergent human? Vice versa? How do we take care not to misinterpret by interpreting through our own memories? How do we actually hear each other? Is it possible?

Thoughts? I’d love to hear them in the comments.

Progress Report

~ gypsy116toast2001 ~ Leave a comment

I am aware that I dropped my mom’s being in the ICU here and then disappeared. For anyone who may have read that post and/or may be concerned, I wanted to let you know that as of yesterday, she is home. Her hospital stay was one complication followed by another and I have had and still do have my reservations about her being sent home. I’m of the opinion that she would have been better served by being admitted to a rehab facility temporarily before coming home. To say that it’s been stressful is more than an understatement. As of right now though, she does seem to be doing alright. She is weepy, in an exhausted, I’ve barely slept in two weeks but grateful kind of way, but she’s doing fairly well.

Since I’ve been up, she’s told, through tears, how grateful she is for me. She’s done the same with my partner and says when she talks to my sister, she’ll tell her the same. I bristle, unsure how to react, every time she does this. I’m not used to praise or any kind of positive acknowledgement of my existence coming from my mom. I’m used to something more akin to criticism, disapproval, judgement. I want to encourage this positive development but it’s uncomfortable and you know, I don’t trust it. We don’t have that kind of relationship. I don’t know how to respond.

I’m not doing great, in general. It’s hard to explain. COVID-19 has once again left it’s mark. I feel the same way that I did after I had it the last time, only not as intense. Last time, I couldn’t move, everyone had to help me. This time, I technically can do things for myself, so I do. I don’t think I actually should. I think my body needs far more rest then it’s getting. The people around me aren’t jumping to help me. They see me up and moving about and assume I’m fine. The problem though, really, is me. If I can technically do something, I do it. There isn’t enough energy to go around. I won’t ask for help.

One last thing. Currently, I see two therapists weekly. Therapist number one for trauma. Therapist number two for autism related concerns. I cancelled my appointments with both of them the past two weeks. I’m contemplating cancelling again. I’m also contemplating telling therapist number two that I need to take a break for awhile.

I don’t know how to explain the effect that appointments have on me. My entire body becomes both tense and activated. That alone is exhausting. On top of that, sleep becomes almost impossible after a session. My mind wants to obsessively follow every thread of conversation that was had. I can’t stop or even slow the thoughts. I’m exhausted. I don’t know that two to three appointments a week is sustainable right now. I don’t have the freedom to rest enough to make it feel doable. I’m just so tired.

~ gypsy116toast2001 ~ Leave a comment

I want to ask anyone that reads this to send love, light, good vibes, juju beans and/or prayers to my mom. Whatever it is that you do. Whatever it is that you got. As long as it’s positive and healing, it’s appreciated.

My mom had knee replacement surgery last Wednesday. She’s been home since Thursday. Her knee seems to be doing well but she’s been having other issues. She’s now in the ICU with a blood clot in her lungs and scarily low sodium levels.

I do know and understand that our medical system can and does save lives but with the way that it’s set up, oftentimes it does more harm than good. It feels like a conveyor belt trudging along, patient in, patient out, as quickly as you can. This assembly line process is further hampered by bureaucratic bullshit and many physicians who assume that their medical license e makes them all knowing demigods. The system is not set up to hear patients.

In my personal life, the stories of people injured by our medical system in ways that could have easily been prevented had someone simply listened to the patient and gave them the benefit of the doubt are myriad. Like hey, maybe because it’s your body, you might have some useful input. I know someone who was sent home from the ER with medication for a migraine, after telling the doctor that they’ve had migraines their whole life and this doesn’t feel like one, only to have a stroke. Someone else who made repeated trips to the ER… It’s just the flu, nope an issue with their thyroid that caused brain damage. A young woman who died after thyroid surgery. She complained that she couldn’t breathe. They gave her anxiety meds, she was hemorrhaging. I could go on and on.

Myself, specifically, was sent home from the hospital when I had my son, after repeatedly saying that I didn’t feel right and thought I should stay. I was sent back two days later with postpartum preeclampsia. I could have easily died. I went only went to the doctor for severe constipation. I had no idea that blood pressure was sky high.

I’m writing this to ask you to send my mom love. I truly believe that healing energy helps. But I also want to spread awareness about the importance of listening to yourself above your doctor when something feels wrong in your body. My mom has been complaining about symptoms that didn’t seem right to her since she had the surgery. No one listened. I’d like to say throw a fit but I know from personal experience that that may not be enough. My partner threw a hell of one after my C-section, they still sent me home. My advice? Threaten legal action. Keep screaming until someone listens. Your life may be on the line.

You don’t have cancer, you’re fine!

~ gypsy116toast2001 ~ Leave a comment

I had my appointment with the hematologist last week. I want to take you through a brief synopsis of said appointment, you know, in case you’ve only ever been to the doctor for things they see everyday… Things that are acknowledged… Things that are recognized as real and therefore you were treated as valid…

I want to preface this by saying that this doctor did seem to be a perfectly lovely human being. She was kind and knowledgeable and did seem to genuinely want to help. This is in stark contrast to many, many (not all but MANY) doctors that I have seen who instead appear to not have much knowledge at all, while simultaneously acting like they know everything and completely discounting anything I may say as having any value, if they even acknowledge the fact that I’m speaking at all. That said, let’s get to the appointment shall we.

A little back story, I am an anxious person. I don’t want to get into all of that now but I am. Anxious. Appointments of any type tend to have me extremely overwhelmed to the point of nearing panic. This has improved over the years and I can mostly hide it and get through appointments seeming like a fairly normal human being instead of the ball of anxiety wrapped in skin that I feel myself to be. This appointment was different.

I spent all morning in a state of panic. I was really nervous about having to ask about the possibility of MCAS. I had asked my naturopath if she would write something for me to bring. She didn’t think it was necessary as she thought the doctor would have heard of it. I wasn’t worried about her not having heard of it but more of me not being heard when I brought it up(because this has commonly been my experience) but she’s a busy woman so I didn’t push it.

On top of the normal appointment anxiety and the MCAS question induced panic, the day was just one of those where everything seems to go wrong and I ended up being 10 minutes late. I am NEVER late. I prefer to arrive at least ten minutes early because… You guessed it, the possibility of being late causes me copious amounts of anxiety.

Needless to say, I was a ball of raw nerves when the doctor walked in (thank God my sister went with me, in case I lost my words because I did just that). Apparently, so much so that it was readily visible because it was the first thing said doctor commented on when she walked in the door (she wrongly assumed that I was anxious about my diagnosis, again wrongly assuming I thought it might be cancer).

She went through all of my blood work to explain to me that I do not have cancer and I am fine. I’m fact, had I (and my sister. Thank you, I love you) not brought up MCAS, that would have been the whole of the appointment. You don’t have cancer therefore, you are fine (giving credence to my belief that people only take you seriously if you have cancer, no matter how sick you are with something else). But I’m not fine. I have been very sick for eleven years. If she wasn’t aware of that (because, you know, why would my PCP want to mention that in my referral), she most definitely was aware that my white blood cell counts have been high, chronically, for years. That’s why I’m here.

Her explanation was that my body was just reacting to things. Well yeah, no shit. Why?

I said that I wasn’t worried about cancer but that I think that I have Mast Cell Activation Syndrome and my sister filled in the back story because… again…anxiety…no words. She, the doctor not my sister, said that yes, that could account for my wonky white blood cells and ordered more tests(I’m still unclear on the results) and sent a referral for an immunologist.

This appointment actually went really well, like this is the best outcome I could have hoped for but… If I hadn’t pushed, it would have been, you don’t have cancer, you’re fine. No acknowledgement of anything else.

When we were getting ready to go, the doctor said something along the lines of, sometimes it just takes awhile to get a diagnosis, especially with these rare diseases. I think she was trying to be comforting and I really do appreciate that but …. It was said so nonchalantly and off the cuff, like over a decade of having a debilitating illness is no big deal. Eh, it’s just the way it is. But it isn’t nothing. Have you, dear doctor, ever been sick for even a year straight? I doubt it, otherwise you wouldn’t be so nonchalant. I understand that doctors are only human and that they only have the information that they have but maybe, just maybe, if more doctors listened to their patients and took them seriously, it wouldn’t take more than a decade for people who are very ill, to find a diagnosis and hopefully treatment that actually helps.

Unhappy Halloween

~ gypsy116toast2001 ~ Leave a comment

I’ve made the final decision. I will not be dressing up for Halloween this year. I’m just too sick. It isn’t possible.

This is, of course, something that I already knew but I didn’t want to accept it.

I’m hopeful that because now we know what we’re working with, symptoms will be under control by next year.

I’m hopeful that the hematologist will be able to give me an official medical diagnosis of MCAS.

I’m hopeful that this will mean that I will be taken at least somewhat more seriously.

I am hopeful but for now this really sucks. Anyone who knows me knows how much I love Halloween. You may or may not know that I wasn’t aloud to celebrate it as a child for “religious” reasons and that that makes it all the more important to me now.

*sigh*

Now to figure out how I’m going to manage taking my son trick or treating….

I need a wheelchair.

Do I wish I had cancer, of course not, but….

~ gypsy116toast2001 ~ 2 Comments

I live with my parents out of necessity.

I moved in with them before the onset of my physical illness for reasons that I’m not going to get into in this post.

I’m treated like a spoiled brat for needing the help that I need (I’m not going to get into those specifics here either) and not being able to help in the ways thay I am not.

I, of course, internalized this. While I know this isn’t true, my spoiled bratness, I nevertheless gaslight myself constantly (Maybe I don’t need help with that. I can do it, I’m just (insert any number of negative and untrue things), which leads to me overdoing and making myself sicker, thus needing more help, getting more negative feedback and gaslighting myself some more….

Sigh

I read a book recently, How to Be sick: A Buddist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I’m not going to give a full review of the book here, I found some things problematic but it was worth the read (if you read it, let me know what you think). What really struck me was the amount of support she received from her husband (also unsurprisingly, she received much better care and much more support from her medical team than I could ever dream of. Being that she is not a poor woman with a history of psychiatric issues but instead a wealthy white woman with a career in academia, she was actually taken seriously both when she became and continued to be sick). Toni’s husband, of course has had struggles with the change in his life due to his wife’s illness but it appears that overall he does not blame her, he takes on the extra responsibilities that are necessary and… He does things to try and make her existence more liveable (like not just cook for her but make her delicious meals for dinner every night) because he gets that however hard this is for him, it doesn’t compare to how hard it is for her. Reading this, I felt both hopeful and so extremely sad. It fills my heart to know that there are people who do try and understand and that there are people with chronic illness that are not living my experience but… I know that it’s privilege and most of us do not have that privilege.

I’m gonna let you in on a little secret (or maybe it’s not a secret, maybe you’ve heard this before but it feels like a shameful secret), many people who are living with chronic illness, at some point or another have had the thought/feeling that they wish that they had cancer instead of their specific illness, myself included. Do I actually wish that I have cancer? Fuck no. I don’t think anyone really does but the feeling/thoughts come up none the less. Some people reason that with cancer, there is treatment. You get treatment and you either get better or you die and that seems better than living in constant misery for the rest of their lives. That’s valid, though I don’t subscribe to that reasoning myself. I know that some people do recover and I have hope that I will. Should I not then I believe that this is my path and I would have to come to terms with that at some point.

My reason (and others I’ve spoken to/read about) for feeling this is that people take cancer seriously. They treat people with cancer like they are very sick and many offer help. There are organizations that offer free help to cancer patients, things like cleaning and grocery shopping. There should be. Don’t get me wrong, I am glad these services are available and if anything wish there were more but… why aren’t these same types of services available to those of us with debilitating chronic illnesses?

Many of us have no support. No one really even believes us. As far as I know there are no services to help us (if I’m wrong, please let me know), but I, and many others are unable to do these things for ourselves.

I was really sick before I moved out of the mold. When I moved out, as happens when you body starts to detox, I got sicker. Then I got even sicker when I actively started trying to detox. Then I got covid and the amount my illness has increased is indescribable. I was unable to do things like cook and clean when I was sick initially, now….sigh.

I’m lucky that I have support but I get very little help and a whole lot of shame and guilt from them. I guess all I’m saying is that there are a lot of people like me. We need you to listen to us and believe us. If you are able we need your support. We need help.

Here I go, I’m people pleasing again…

~ gypsy116toast2001 ~ Leave a comment

Last night I went to the ER.

I’ve been having chest pain since covid, it got worse with a few accompanying symptoms that made me think it would be best to get checked. I’m fine. I don’t want to talk about that now.

What I do want to talk about is trauma. No, not really, more just the impact.

My son woke up when I was getting ready to leave in the ambulance. He clung to me and cried. He didn’t want me to and was obviously scared. I hugged him and told him that I was ok but I don’t feel very well and the doctor needed to look at me but if be back soon. He cried. He clung. I had a hard time letting him go. I think having to pry him off of me and give him to my mom while he was in so much distress hurt my chest more then the pain I was having.

In the ambulance the EMT asked about my son… His name, age, if he’s my only child…. And then he said “he sure is spoiled isn’t he”.

I was taken completely off guard but it felt like a kick to the chest. I wanted to say, “no, he’s not. He’s three and was woken in the middle of the night to his mom leaving in an ambulance. He’s scared and rightfully so you. Have a little compassion, asshole”.

Do you know how I actually responded? A polite laugh, suggesting that he was right, my son is spoiled.

What does that have to do with trauma? My relationships, starting at birth have taught me that it’s best to be polite when confronted with negativity. It’s how you stay safe.

There have been times I’m my life where I have had other reactions, some also from trauma and some more authentic but right now … I have become so conditioned to be in fear that I sold my son out.

Fuck that. The more I become aware of just how often I fawn, the more motivated I become to heal. For myself. For my son. For everyone.

Sick and Tired

~ gypsy116toast2001 ~ Leave a comment

I am sick and I am tired.

Very literally. Every second of every moment of every day for the past nearly eleven years.

There is no break from this for me.

Today I’m talking more figuratively than literally, however.

I am so sick and tired of the lack of awareness around many, if not most, chronic illnesses. I’m tired of the misinformation,the stigma,the biases. I’m sick of the judgement and the mistreatment. I am just so very sick and tired.

Recently, I went to the doctor, to my primary care physician. This is a new doctor. My previous PCP dropped me without warning because I had not been to their office in three years. The appointment I had only served as a reminder of why I avoid doctors visits unless absolutely necessary.

I have recently started seeing a naturopathic doctor for mold toxicity/CFS (CIRS, fibromyalgia…the diagnoses do not matter…the symptoms and getting to the roots does). She, the naturopath, asked me to see my primary to get some follow up blood tests and an exam. If her medical director did the exam, I’d have to pay out of pocket. Knowing my financial situation, she was trying to save me money.

Even though I brought my labs that had just been done, showing abnormalities that should be investigated further (suggesting diabetes and possible liver infection), this new PCP refused to do the exam until after he reran the original tests. He also completely ignored my request for him to communicate with my naturopath. Ignored, not refused, he acted like I was not speaking.

To say I’m over our current medical system is an understatement.