People who know me already know all this.
So many things on my mind, my condition, my brother, his family my mom. I fight every day to try to lead a normal life to help out my mom and help take care of Rayne. Things that were so easy and i took granted forback 3 years ago, eating, playing my ps3, working on my computer. Facebook, twitter etc etc. I did graphics and websites very easily. walking, running, hell just anything. I am just so tired 24/7 I can sleep for a whole day and still wake up and couple mins later fall back asleep. My medication is not working as long as it used to I am lucky if I can get 2-3 hours of being awake from it. I wake up at times fully paralyzed for a good while before I can move. At times if i get upset or agrivated or irritated, i feel weak and drop. I stare out in space listening and hearing things. I sleep sideways on my bed in order to not fall off it.
You know its funny back in 2011 Early in the year I was highly active, I always walked across the street to the store, I always went places. I was working for Amazon. I had a great gf Marlene from 2008 to 2011. I was a programmer working in 8+ different coding languages. Ruby, perl, php, tcl, html, xml, Objective C. I enjoyed playing my ps3. I was with Amazon for almost 7 years. In my time with Amazon, I have learned many things. I enjoyed working for the company.
For people who dont know back in middle of 2011, I had started falling asleep a lot unknowingly since I was working at home for Amazon. I started noticing trends, IMVU and facebook and twitter on my breaks and lunch breaks I would start a chat invite or convo say hello or greet someone and thats it nothing else, you could see in the chats how pissed ppl were getting. people started getting pissed on IMVU and twitter as well cause I would respond back like only a couple mins had gone by when in fact it was hours. I still handled my customers great with Amazon. My call times were just longer. I went to talk to my supervisor on the phone and told her I was so very sleepy and I had a headache and needed to take some time off. I rested the whole weekend. HR eventually had a lot if my calls security audited after I had spoken in confidence to another supervisor about what was going in they felt the need to let HR know, talk about backstab, i dont trust anyone that says you know you can come and talk to me about anything not anymore, anyways. scheduled a drs appt for july 19th 2011, all these testt
s done but I was in perfect health just couldnt stay awake at all. Scheduled consultation with a sleep specialist on august 15th, Amazon gave me LOA for that time based on paper from my doctor. Aug 15 dr saw me i filled out a paper he decided to do a sleep study. End of august did the sleep study, PSG and MSLT, spent the night in the hospital overnight, slept perfect, next day 5 naps with 2 hour intermissions, Sept 3rd results from dr is narcolepsy. I was prescribed provigil which had an amazing effect on my being awake but had interesting side effects, DR gave me time off work to get adjusted to the meds. Went through alot of hell trying to work and lack of funds, my meds quit working in December 2011, my body had built a tolerance to it, i returned to my doctor and told him this. They put me on nuvigil, taking that first pill omg I remember wanting to claw my eyes out. It was such a head rush, if ur a smoker, imagine staying off cigarettes for a couple of days or a week. Then lighting up and smoking, remember that extremly painful headrush lightheaded feeling that eventually goes down, I feel that every day i take a pill of my nuvigil the whole damn time mine never goes down. Some reason i had to get a MRI and EEG in may 2012 got one, results show issues with my brain, something called MVM of my left temporal lobe, anc i have a abnormal size vein in the middle of my brain. EEG said I have some type seizures in my brain while im sleeping, Epileptiform discharges is the word used. So the full 2012 I am trying to work and cant I took so many days off as soon as vac blackout was done with amazon i used it. I tried everything to make each day go by quick, I had filed for disabilty, cause HR and I had been emailing asking a narcoleptic the dumbest question, can you promise you wont fall asleep on the phone, I said I will try not too but I cant promise it. Amazon finally terminated me September 17th 2012, reason involuntary termination due to medical, oh how nice of them, apparently if there is ever a cure for my narcolepsy I can be rehired as soon as a doctor clears me. I filed for unemployment never got it, filed for disability rejected 2 times. My mom brother my friends on fb and imvu, has been amazing in helping me. As of May 19th 2012 I have been final disgnosed as narcolepsy with cataplexy. One thing that goes across my mind is why and how. Working for Amazon ive had a couple of things that got me sick, bronchitus, maybe a cold, cellulitus turned to MRSA but got it taken care of. I never got sick, I never had flu vaccines ever never felt the need to. Ive only had one vaccine in my life and it was when Amazon sent a picture of a pig in an email talking about swine flu and how 3 local ppl had died from it, at thd time I was working on site with like 900 people coming and going so I did choose to get the vaccine in my left upper arm, they called it H1N1. I remember feeling extremely tired and sick after getting it told my supervisor, I was told it was normal, i returned back to my cubicle. Found ok vaccines do give you the illness then fight it off. I have been sick constantly. Still fighting my narcoleptic sleep attacks and muscle control loss at times. One thing crossed my mind, it was until my mom had found an article about finding a link between H1N1 vaccine and narcolepsy, I have researched this a lot, something called pandremic, but it was never legal in the US. Still required me to look into it, contacted HR and they gave me the info to the company that did the vaccination. This company hasnt given me the vaccine lot number. No phone no email only some stupid contact page. HR i realize cant force them too. Anyways i brought this up to my doctor how probable it could be that i got a h1n1 vaccine that gave this to me. No response. I was going to file a vaccine injury thing I still might. anyways to make a long story short, I have hired some disabilty lawyers back in 2012 and as of aug 21st 2014 my doctor filled out some paperwork for them. Hearing is soon in front of an administrative law judge for my disability case. I just hope this all can end soon, been fighting this for such a long time.