Health update.

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. 

34 thoughts on “Health update.

  1. What the actual fuck!!! This is infuriating and it reinforces my own opinions of most doctors being dicks. I completely understand this experience though as I’ve had my own issues with these sorry excuses for doctors.

    So glad you have one doctor on your side, but since our medical system splits everything on our body up into special categories, the odds of being subjected to the pricks that make up most of the medical community are quite large.

    I am sorry about what you are going through. Doctors are not who they take an oath to be, at least not most of them.

    I hope you feel better, prayers for your recovery, or even a discovery of what would make that happen.

    Liked by 2 people

    • He felt it pertinent to tell us the gruesome details of why he has ptsd and i am still upset about it. Completely not ok to tell me gruesome details of violence and gore. Every bit of it not ok.

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  2. I hate looking for a doctor that actually will take the time to find out what is going on with me. I haven’t found one yet. I have extreme nausousness, sometimes vomiting and diarrhea andvlow feritan levels. But apparently no one is concerned about it. I was actually glad I started vomiting because I felt I needed proof that I was REALLY sick. I HATE the medical profession lately.

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    • Low ferritin can cause SOOO many symptoms and I needed the infusion but the mayo clinic gave me two infusions without checking my levels. Had they only given me one I would have been fine. So there again they fucked up and had they been mindful and paying attention then i would be totally ok and that decision to get the infusion would have been a wonderful one.
      I am so so sorry to hear that you have been sick with no answers. It is very frustrating. Very upsetting. I’m so sorry you are going through it

      Liked by 1 person

  3. Hello Bethany. I am sorry you are going through this, especially at this time right after Irma. You said it so well, we all react differently to the many things we have. Your history is working hard against you. It seems to make everything worse and they don’t see the interactions. I wish you the best, keep after it ,as you know if not pushed they will let it all drop for something else. Hugs

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  4. Horrible. I’m very sorry you have to deal with this crap along with everything else. You symptoms sound like it is something physical, not mental at all. Everything my daughter had, they said it was mental. It wasn’t.

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  5. What a horrendous week you’ve had, Bethany. Although I don’t share your health issues, I do share your disdain for specialists in general. My family doctor is the best. He’s thorough and he listens. Because of my diabetes, I’ve been seeing him every 3 months for over 20 years. We know each other well. I hope you have a better week coming up. Hugs!

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    • My family physician is the same. After getting diagnosed with lyme disease i saw her once a month for almost two weeks. Then prior to that with my muscle disease a few times a year. Thankfully we have someone we can trust. The issue is when bigger issues come up that they don’t feel comfortable with and then the referral to the specialist comes in and things go awry

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