#spoonie thoughts

SPOONIE THOUGHTS #0002

Honestly I don’t know what to feel or what to do anymore I swing between terrified to angry to just sorta not caring. I live in the US and there are some states that have listed my decently rare disease SMA on a list of those hospitals can refuse to treat. I haven’t even bothered to check Washington’s plan I’m to afraid I’ll see SMA or other chronic illness and disabilities my friends have. I’m scared I’m turning 18 in a couple days, I’m supposed to go to college next year and I don’t know if that will happened. I’m scared because I just read a post from someone saying they just received a letter from their GP asking that she and her wife sign do not resuscitate papers so hospitals won’t waste resources on them. I’m scared this will happen to me. I’m scared but I’m also mad in a few days my school will be starting zoom classes and the school district has sent out emails talking about how easy and accessible this program is and my teachers have emailed about how easy it is. I’m mad because for my entire time I’ve been in high school I been fighting for the ability to video call into my classes when the elevator breaks and it breaks at least once a month from anywhere to a few days to a few weeks and because I’m in mainly AP classes which conveniently the majority of them at my school are upstairs I would miss out all my one or two of my classes so I fought and fought to be able to video call into my classes mind you I’d be doing so from a office in the school’s main office with a para sitting right next to me cause you can’t just leave a student unsupervised for who knows how long and the office I sit in is between two dean’s offices and I’m literally looking into the principals office. But when ever I asked I was told it was too hard or too much work and that each teacher would have to send home papers that would have to be signed getting parents permission that it was all right that this was happening because as they put they’d have no control over who was watching, listening and/ or recording the class despite the fact of was on school property in the main office surrounded by administrators and having a school employee who’s sole job was to watch me. But now video calls to class are easy and not a single permission slip has been sent out despite the fact these calls will be done from peoples homes and the school actually doesn’t have control over who will be watching listening and or recording the lessons. And then I go to not caring should I really be shocked that any of this is happening should I be shocked that in world that has people who advocate for the killing of disabled babies, in world where we still see sympathy articles written about parents who murder their disabled children should I be shocked that disabled people are being asked to sign off on their own deaths so resources aren’t wasted. Should I be shocked that the school district that has made me fight to be treated as a person my entire time in school, the same school that left the elevator broken for a month but the minute the theater program started complaining that it would be hard to put on the play without the elevator and magically the elevator was up and running in three days despite the fact I was asking almost every day when the elevator would be fixed cause I was starting to fail my language class because it is surprisingly hard to learn a language without access to someone who speaks the language and you know what I was told they didn’t know when it would be fixed cause the budget and they weren’t really sure what was wrong with the elevator. So you know I don’t whether to laugh or cry at this point.

When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.

No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.

FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.

DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.