Twenty years old, and I've spent my entire life attempting to convince my doctors, and my family for that matter, that something was wrong with me. When there's something in your body that's not supposed to be there... you can feel it. almost like a sixth sense. For years I battled with symptons from as severe as blackouts of memory and inability to breath to as mild as sleeping til noon or one pm. Doctors ran test for years, ironically every single one except the one with the ability to diagnose me. Hospitals wrote me off as being anemic to explain the weakness, and having a heart murmer or thryroid condition for everything else. How wrong they were.
Durning my freshman year of college, I sustained a concussion after an attack by a fellow student. Two months after the first grand mal seizure occured. Terrified doesn't even begin to summerize my feelings. There was confusion, anger, not to mention the excruciating daily pain. I thought I had had horrible migraines before that couldn't possibly get any worse. Oh boy, was I ever misinformed. After several months of bouncing around, I finally managed to land in MUSC where I was diagnosed with a condition known as Heterotopia, after finally recieving the dianosing test: an MRI. Meaning nuerons accumilated and developed in clumps, in the wrong places inside my brain while I developed in the womb. Specifically along the lateral lines bilaterally forming nodules. Turns out I was right, there is something inside of me, that is getting worse the older I get. The only cure - surgery. Where do I sign, right? uhm.. no. Due to the location of the nodules, I'm not a candidate. Only hope is to find a medication that works and pair it with a type of pacemaker designed for the part of my brain that the seizures originate from. Since I have no medical insurance, bills are outragious. They won't even consider signing off for me to have the pacemaker put in.
Feeling alone is the worst, no one believed I was sick, and then after it was proven the friends I thought were legit abandoned me because they mistook me feeling too tired to go out for "blowing them off". Granted, I can see how things were misunderstood, however, the hurt was still there. Then Ameriplan came along and offered me a stay at home job. Which was great, since how half the time I'm too worn out from either having an absent seizure or a seizure in my sleep to go anywhere. Extra bonus is that they arn't an insurance company but a discount health benefits company that has finally been able to finally get me the medication I need, and possibly the pacemaker in the near future. The chance to be normal.. to be healthy.. it's for lack of a better word a godsend. I found help, when I thought it was hopeless, and I want the chance to give everyone else aflicted with epilipsy the same help. Even if you don't want to sign up for a plan or become a member of the team, that's fine with me. If it's just a chat, that's good enough for me. I want to learn other ways to get involved as well if anyone has any recommendations. If you are interested however, in what Ameriplan is check out my website (www.everyonebenefits.com/ellepw).
look forward to hearing back!