my story

Discussion in 'Help Me! I Need to Talk to Someone.' started by Trip, Jul 29, 2009.

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  1. Trip

    Trip Member

    this seems better to break up into two parts - see the aftereffects forum for the rest

    I initially came here to find a friend who left a site - I was fine then, found him, and since I was healthy there was no real reason for me to stick around

    But last year - well two years actually if you count signs I didn't realize were a sign of problems - my childhood epilepsy came out of remission. It took me two months to find a doctor who would listen to the fact that there were days I couldn't roll over in bed, didn't have the energy to chew my food even if I managed to get food and put it in my mouth, and needed to sleep for 20 hours every time I ate a peach or a pear,, regardless of how I good I felt before hand. They all said "that can't happen" or "Well whatever it is, isn't affecting you now so there is no reason to worry about it" - never mind that fact that it was reoccurring intermittenly and it obviously wouldn't be effecting me on the day I went there as i had to have enough energy to get to the doctors in the first place - because of the seizures my mind was whacked and I didn't realize that being too exhausted over a period of days to drive 10 minutes down the road was as serious a problem as it seems now - (why was I driving you ask? - well at the first sign of a problem indicating seizures I went to a neurologist, who promptly told me I wasn't having seizures, ruled out the possibility of any seizures at all based on one clean EEG - i now know that my type of seizure almost never shows up on an EEG, and said there was no reason at all why i couldn't work full time. And I needed to drive to work to pay on all the medical bills I was incurring.) When I began going to the ER, telling that I had a history of epilepsy and was experiencing the same feelings I always experienced as a child during a seizure, as well as the same aftereffects, they demanded I tell them what illegal drugs I had taken. After the third drug test came up negative, rather than do an EEG, they put me in a psychiatric ward for psychosis. While there I eventually got to see a half decent neurologist who ordered an EEG - constant Seizure activity with 6 seizures (and that was an EEG on a day I felt mostly "fine" - not one of my bad days). I was the worst case of epilepsy she had ever seen and she couldn't believe I was able to walk and carry on conversations - just the day before I was told there was nothing medically wrong with me by another doctor. To make matters worse, this diagnosis occurred at the end of June - I'm a teacher, and teachers in the US are not allowed government assistance during the summer if there is reasonable expectation of employment in the Fall, even if they have letters from multiple doctors stating they aren't allowed to work for at least a year. Since I wasn't fired for having seizures (which any business in the US could have legally done to me last year even if the seizures didn't affect my employability) I wasn't eligible for medicaid or food stamps, and my bank account had already been depleted by spending two months seeing doctors and being sent/driven home from work. The hospital stay, two EEGs, two CT scans, two MRIs, blood tests, doctors visits and medicine that cost $2,000/month were and still are by responsibility - most places denied all charity on the basis that I had insurance.

    I finally got on medicaid - I still have to pay $200/month plus insurance on my car. If I sell it, I will get kicked off of medicaid, and the profit from the sale would go straight to paying medicaid back - even if the law were changed so i could keep the profit, it still wouldn't cover a months supply of medicine, and it takes an average of 3 months to get on medicaid. If I return it to the dealership it damages my credit, and I'm going to need to take out a massive loan to cover my medication from the time I return to work until the time a company health insurance plan kicks in (and I can't take generics so a good proportion of company health insurance plans will still not be of benefit to me - the insurance i have now, while very poor, is better than the only private insurance plan in the US offered to people with pre-existing epilepsy diagnoses. Lucky for me I grabbed it before I was re-diagnosed). So thats a very useless expense, but one I've no way of getting rid of.

    My family has been as far from helpful as they can possibly be - promising me I could live with them to avoid rent, only to change their mind when my bags are packed (it seems to me they are trying to get me willing to pack so that when i'm packed,they can change their mind, and have me move in with my mom - she was so abusive to me as a child that i had to live with my father for my own safety. I have yet to encounter one thing in life that made what I went through as a child with her worth it, and I felt that way even when my life was going great - before my epilepsy returned, I was going to be attending one of the most elite doctoral schools in the US (free year round apartment, free tuition/food, and $30,000/year stipend, plus summers off from school), I had half the money I needed for a 3 week european country hopping tour, had $5,000 in savings for when I moved to get my phD, and would have also gotten about $11,000 in inheritance - my mom gave me $5,000 for inheritance, then claimed she was keeping the rest to pay on bills.She said she paid off all my bills, when in reality she spent a total of $30 then told me I had ran out of inheritance - i had to borrow alot of money from my boyfriends parents to pay off bills that would have went to collections as a result of her lie - bills that I could have been paying one dollar a month on until paid off, if not for my mom lying about them, leading me to miss payments (the one biller of a several thousand dollar bill refused to let me know if payments were made, or give the balance over the phone. then she didn't send out a statement for 4 months so I had no reason to believe this bill wasn't paid off - when I confronted the biller after getting a collections due notice, she said she doesn't send out statements before collections are due, because its the patients responsibility to know how much is owed (and almost every bill has a horror story behind it, including one that has been overpaid by almost 100 percent now sending me letters claiming that I've never made a single payment)

    The stress of all this destroyed me, coupled with daily seizures, most friends and family abandoning me in all forms the moment they heard I had epilepsy - including the people who were promising me places to stay, when they knew what I was experiencing, and thought it was chronic fatigure syndrome. I spent the holidays alone because no one wanted to include me in their celebration when celebrating the holidays was the only thing I had to look forward too all year - plus my birthday falls in between thanksgiving and christmas. Not so much as a card, phone call, facebook/myspace post, or a "we wish you were well enough to travel to join us" - they only birthday messages I got were from people on facebook who hadn't seen me in 8 years (hs graduation) and didn't know about the epilepsy because we were never more than associated friends.

    I only had one friend and he beared the brunt of everything - from seizures that caused me to walk down the street in the middle of the night, repeatedly screaming at him for being as evil as hitler because he didn't support medicaid, and medicaid is the only thing that prevents people in my situation from dying slow painful deaths. He paid on my bills, and cooked for me, he tried to give me happy memories when i alerted him to what was bothering me. I was not receptive - which we know now is due to medicines I was taking, but hes been broken so much he cannot forgive me for some of the things i did - and I don't even know what all I did to him. I was placed on a medicine in february well known for inducing pyschosis - it made me anorexic - and since I need to eat a high fat diet daily to control the seizures, that was even more dangerous than it would be for someone else, and caused me to explode in rage without warning. We went to the doctor, and she didn't believe it, and left me on the medicine, and just stopped the upping of my dosage to where she wanted it - i know now that any good doctor would have immediately pulled me off that medicine after they heard what was happening. Instead I spent 4 months, screaming at my then boyfriend, sending hated messages, being extremely suicidal and refusing to eat for days at a time, and even when I forced myself to eat I couldn't finish the equivalent of a meal you'd give to a 2 year old in a full day of eating - You can only force so much food into your body when you aren't the slightest bit hungry. The medicine caused me to be constantly afraid and sent a swarm of negative thoughts running through my head that never ended - it wasn't possible to think a positive thought.

    Finally my boyfriend broke up with me, and in despair I stopped taking those pills and I felt happy for the first time since I had gotten titrated to a therapeutic dose on it. So i didn't start again - going by people on epilepsy sites, its more common for what happened to me as a result of zonegran than it is, to take it and not becoming suicidal/explosive (it was originally developed as a drug to treat psychosis but it isn't used for that because of its tendency to induce psychosis). Now I'm off the zonegran and my mind is becoming clear again. I don't have much memory from the time I was on the zonegran - my short term memory lasted about a day on it. But my memory is beginning to come back to me and I hate myself for what I see, what I have done. In addition, I was going through my emails as I needed a copy of a letter to send to my exboyfriend (hes the friend that is still with me) - while this was going on, he was sending me emails saying that he helped out with bill, and ending I love you, and I was responding by attacking him for his beliefs. I've no memory of doing so though its not rare for a seizure to provoke extreme anger, and he was born into a wealthy, loving family who paid his way through college, and is still paying some of his expenses, and would never put him out on the street - i was born into a family who refused to let me work at all in high school, refused to sign the paper saying they weren't helping me pay for college so that I could take loans out in my name (because signing it would be helping me pay for college so they couldn't sign it in good faith), and then threw me out of the house when I was 18 because I wasn't going to college - sorry but I couldn't find a college that only cost $500. My parents also kindly called all my relatives at the time and told them not to take me in because I was looking for a way out of college because I thought it would be too hard to go to - college was my dream, and I had been taken college courses since I was 15, earning A's in each one of them, so you know my parents couldn't have even a slight honest belief that I was afraid of the difficulty of college

    Thats probably way to much background but you know the situation I'm in now........and in the other forum I'll tell about my suicide attempt
  2. Trip

    Trip Member

    actually the site logged me out while I was describing my suicide attempt that for some unknown, unexplained reason i survived from and i don't feel like retyping the entire thing again - maybe tomorrow. (the autologout is a pretty bad feature for a site like this because someone in pain isn't typically going to want to type their pain twice)

    In short, I ate a large container of fresh pineapple - I'm so allergic to fresh pineapple that picking up food at a buffet with tongs that are near it gives me hives around my mouth, though i can eat it from a can without a problem. One bite makes my throat constrict, gives me painful blisters on my fingers, and hives all over my face, chest and neck. Yet I had no hives or blisters, and my throat never constricted- no sign at all that I had eaten fresh pineapple, and I'm glad for having surivived. It makes me want to try harder. There is no reason at all why i'm alive today - perhaps the store was illegally selling canned pineapple in plastic containers, claiming it was fresh so they could charge more. I don't believe in god, and neither does my ex boyfriend who is the only one sticking by me right now, so no religious explanations are being considered. Just that if I ate pineappel, and that much of it, and didn't die, then there must be a reason that I'm here
  3. mandyj101

    mandyj101 Well-Known Member

    hi there ..
    it sounds like u have been through alot .. i just wanted 2 say that i read ur post .. and i hope u stick around and find this forum helpful like i have ..
  4. ashes_away

    ashes_away Well-Known Member

    hi! You indeed have a guardian angel and DO have great things in store for are articulate and intelligent to boot.It was meant to be that you survive and tell this story..and I am so happy you are ok!Life can be a pain..and you've had more than your share of it.But you have a great future and you WILL see those dreams of yours come true!Glad you're here and hope you feel comfortable to talk to us anytime. ((hugs))
  5. total eclipse

    total eclipse SF Friend Staff Alumni

    Hi Trip glad you came here keep talking to us we are listening I hope today is a better day for you.
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