It’s been a week since the cluster of 5 seizures on Saturday. I have not been able to read but a few blog posts all week. I am so sorry for those I have missed. My pupils were dilated for most of the week and I had such a splitting headache and nausea that I could not read or watch tv. Everything was so overstimulating. I wrote a blog post on Monday which I have no recollection of but I just read it and it was pretty good!
This week has been full of disorientation and confusion, memory loss, and a ton of symptoms, all which are apparetnly not normal. So at the request of the ER doctor that I saw a week ago I went in for a follow up on my continued symptoms. I was told it is not normal to, after a seizure, have memory loss, confusion, or any of my other symptoms. So me waking up and realizing my mother hasn’t spoken to me in 2 years and feeling like I was just told she was dead is not normal. Waking up and thinking I still lived at home with her for an hour every morning is not normal. Waking up thinking I still lived with an old boyfriend is not normal. And forgetting conversations and blog posts I had the day before, not normal. But he summed it all up for me. APPARENTLY I just have anxiety and PTSD and THAT is what is causing all of this. Hence my poem I just posted. He called on my psychiatrist and I texted her and he called on my family physician. Lots of analyzing of me but no real listening to me.
This is not new. I spent at LEAST 5 years trying to find out why my muscles were weak and painful. I was told I had anxiety and stress for 5 years by at least 25 doctors. It wasn’t until I was sent to the Mayo Clinic that a biopsy was done. That doctor didn’t even believe anything was wrong with me. She even said so when she called to tell me I had a muscle disease. I may have underlying anxiety and PTSD but that was NOT a muscle disease. Easy to just put me in a box and discount and disregard me than determine I have a muscle disease. But all along I have had a genetic muscle disease. How tragically sad.
This is not new. This happened when I was 8 years old and had various muscle disease symptoms. At that time I was told, and still have that letter, that I was making it all up for attention. I must be one big attention needer and love my anxiety because those terms have been used to describe me and ignore the real problems for my entire life. Those muscle symptoms were the start of my muscle disease. Had they done a biopsy then I would not be where I am now. I would not have waterskied and damaged my muscles. I would not have been molested by the ski coach. They would have known I had a disease. But better to just say I was faking for attention right/
Just last year I got an iron infusion from the Mayo clinic because my ferritin was too low. I immediately got chills, a fever, and bone pain. TO this day they will tell me that this is impossible. Can’t happen. Hasn’t happened. I still have bone pain a year later. I guess I just wanted the attention. I want to bone pain. My family doctor checked my ferritin and it was I believe 1800 when the top should be 300. She ordered blood draws to lower that level and said THAT was why I had bone pain. But wait…I thought I was just making it up. Maybe I should just stick with my family physician. She seems to be the only one who cares about me, has a conscience, has no ego, and has a heart, oh and a brain.
This is not new. When I was 18 I was told that I had chronic fatigue syndrome and if I just tried harder, I could push through and get better. Yeah, apparently I was lazy. Not until my 40’s was it discovered that I infact have Lyme disease and I contracted it way back when I was 18 most likely. Too bad I was just lazy. But my family physician again, caught this. She diagnosed the Lyme. So don’t get me wrong. Not all doctors are pricks. I have just had my overly fair share of the ones that are. I make no apologies for calling them out on their bullshit.
So yesterday I find myself in the ER with a follow up for symptoms that are just anxiety and PTSD. I was unaware that these two things could cause memory loss, writing things backwards, thinking your husband is your mom. But I was also unaware that these things could be used to misdiagnose Lyme disease and a muscle disease. I had no idea that once I got the diagnosis of PTSD that it would be used to completely disregard serious symptoms. And again. I am not saying I do not have anxiety and PTSD. I do and I always have and they are debilitating and cause dissociation all which are not new to me. I have seen a psychiatrist and a therapist for a year to deal with these specific things. So to tell me now that these two things not only caused my seizures but are causing the symptoms I am having now…I call bullshit. Maybe they caused the seizures. I don’t know. Maybe anxiety causes memory gaps. But can it cause pupils to be dilated for a week? Severe nausea? Severe confusion and disorientation? Maybe. But I won’t really know because I got put into a box that summed me all up in a nice little bow. My psychiatrist thought that it was more neurological. The ER doc wanted to put me on a med that my psychiatrist said I’d already been on and had a bad reaction. God forbid we go one ego against another and tell me NO you’ve been on that and had bad side afffects. Nope. That had to be followed up with well if he thinks you need to try it….yes, I know. I’m sitting back watching egos get stroked like the cocks I was forced to stroke as a child and it is infuriating. I am a person. But I sure don’t feel like one. I feel just like I did as a kid. So yeah, PTSD is there. But it is as I saw it a little bit of a gift last night as I was able to see the truth in people and power and control. And what happens when you disregard someone while sitting back in your own power. Oh he seemed nice and all taking the time to talk to us and make other patients wait. But while coming in to tell me he had figured it all out he made me wait a good 10 minutes while telling me about his latest competition before telling me that it was just PTSD. He cares enough to spend time with me but not enough to tell me what is wrong until after he gets his story out. Oh but she HE has PTSD so he knows the symptoms. YES we are all the same.
So let me take this moment to apologize to any of my followers if I have ever made you feel that just becasue we have the same diagnosis or had similar experiences, that we are the same. I hope I have never made anyone feel that way. Because we are all very different. We may have one commonality which bonds us together in what should be compassion and understanding and empathy. But each of us is affected in our own personal ways by our circumstances and pasts. To lump us all into one sum and treat us all the same I find reckless and dangerous and at the least invalidating to our own individuality. Omg I feel like I just used such big words for someone whose brain feels fried. Which is exactly what was pointed out to me. I seem fine therefore I must be.
I have no idea what will happen to me. I remember last night which is the first time I have remembered yesterday in a week. But this screen is giving me an awful headache so I need to sign off from my little rageful update on my health. He did order a CT scan of my brain only because I brought the MRA scan results from a year ago when I had my first grand mal seizure that suggested it was abnormal and I needed a CT to further diagnose. My neurologist didn’t find it important to do that. This guy I guess is crossing his T’s and dotting his I’s because what IF it isn’t JUST PTSD. Fucking assholes.