Vampire-Electro Hybrid

My mom was in a car accident when she was 5 months pregnant with me. She had blood poisoning and the drs wanted to do an abortion because they said I would be severely retarded if I even survived and if they didn't do the abortion both of us were going to die. My dad refused and I was born a miracle baby at 2 1/2 months early. I've had seizures since I was born though other than once incident when the drs claimed it was from an overdose, the seizures were never treated. I've had all different types since I was a baby. As a teen I had a bad head injury from a horse riding accident and started having more trouble, yet I was just told I was having migraines. It wasn't until my late 20s that I discovered I had seizures and some drs won't even recognize them still. I tested positive for 3 different types of porphyria: AIP, EPP, & HCP. The porphyria isn't being treated either because its a "rare" disease and most drs haven't even heard about it much less know what to do. They treat me like I'm crazy and try to have me committed if I go to the hospital. I've seen several neurologist who said I am "beyond their scope of expertise" and referred to someone else. I've been on seizure medication on and off since my head injury to treat the "migraines" but as I got older I became less tolerant of drugs. I currently take klonopin 2 mg tablet three times a day. It barely works, like putting a band aid over a gaping wound. I continue to have different kind of seizures. Other seizure medicine I tried made me very sick thanks to the porphyria. I'm aware that the seizures most likely won't get better until the porphyria is address, but I've pretty much given up hope of that ever happening. One of the types of porphyria (EPP) make me so sensitive to the sun and lights I live in darkness with just Christmas lights on, but sometimes even those bother me. Porphyria is where the myth of vampires and werewolves come from. There is one type that will actually make people look like the old time werewolves. Thankfully I don't have that type. However I have trouble metabolizing food, drugs, environmental factors (walking by someone who smokes), during an acute attack my entire nervous system is attacked at once and I am essentially like a vampire without the fun perks. The last several years I've become more sensitive to electricity. If it storms two hours south of us I will be in so much pain and have heart problems. If I go out in a lightning storm I'm like a walking lightning rod. This past year I had lightning arc around me 4 different times. It was painful to breath because I could feel it in my lungs. But still I am treated like I am crazy. Historically seizures from porphyria occur deep in the brain so my EEGs and CT scans have failed to pick them up. Since klonopin is also used to treat anxiety, the doctors entertain me and write in my medical charts that they are psychosomatic. I wonder how they describe me nearly drowning in the pool because water/chemicals trigger my seizures. I loss muscle tone and sunk. My service dog saved me. So according to my medical file I have "non epileptic" seizures and am told to see a psychiatrist more often then not. I used to play several different instruments and speak 5 different languages fluently. Now I can't remember to read or play music. Sometimes after a seizure I can only respond in another language for awhile even if the other person is speaking English. Some days I will see music in solfege but I still can't read it and lack the attention span anymore to relearn. Though I keep trying. I had a bad bout of seizures recently from a drug reaction and have since develop more of an "idiot savant" syndrome. I can remember catalogs of music that I didn't even realize I knew the words to and they will be playing in my head all day long. I remember random facts. Dreams I've had. I even feel memories like I was bad in that moment. I see lights during some types of seizures and also dream. I have absent seizures often. I call them "groundhog day" seizures because when I come out of them I feel like my day has been reset and I have the first thought I did when I woke up that morning. I think it is morning and it takes some time for the confusion to wear off. I don't have any friends or a very good support system and I live in a small farming community surrounded by other small farming communities though I have gone to bigger hospital to get help and have been turned away. Most days I feel pretty much hopeless about my health. I try to take care of myself the best I can on my own but my outer self doesn't reflect that. It is more a reflection of years of medical abuse (overdosing me on steroids and other dangerous medications that has left my body and mind a mess). Overall I feel very alone.