mff181 Posted September 22, 2014 Share Posted September 22, 2014 Well folks after over 14 hours we are back home on Long Island from the conference. I am Michael Fernandez. Many of you know me from HOH or from my blog Migraine Discussions. Anyways I thought I'd post here to let everyone know I've joined up in the forums so add me to your buddy list I'll be adding everyone I know and new friends I make online that I'll meet at future conferences. Even though I had insomnia during the conference and couldn't make it through most of the second day( I got hit twice after Dr. McGeeney's presentation and had to get back to my room apparently I passed out and somehow or other my mom Alicia who many of you also know got me into bed and kept checking on me. Thankfully she heeded the advice of John Bebee and so many others who told her to just let me rest I rreally needed the sleep as I hadn't slept for days before the conference either. Partially sue to all the excitement of seeing all my new friends and meeting up with people I alrready knew. Anyways about 15 minutes from the house we almost died. a car came up the left lane going well over 120 mph he was a dot on the mirrors one second then he started swerving as he approached and THANK GOODNESS he missed us by mere feet and swertved accross 3 lanes into a tree where the car literally exploded and we were hit by falling debris. Many cars stopped but I called 911 asap and gave thewm all I could remember as I was already being hit by a cluster KiP 5 at the time and needed my O2. Besides that my mom is an RN she knew what we would see and didn't want my cluster getting qworse or me trausmatized by seeing the dismembered body of man who only second earlier was high on life and maybe other things just zooming about. I truuly hope that in a miracle he survived but we will find out on the news I guess. the trees he slammed into set abalze immediately and it was the scariest thing I've ever felt even though I've had 6 near death experiences that I can remember and several more as an infant. I can't get the guy's outline out of my head as I saw his mouth open mere milliseconds before he went off the road. I only hope he didn't leave a wife and young kids behind. I can't sleep thinking about it I'm up just afraid of more clusters since I got hit with at least 2 every night of the conference which is new for me. I am seeing my headache doc Friday since I've gone chronic I've got O2 and sometimes that's enough but I need a new regulator as mine only goes up to 15 LPM and at the conference I was clearing the bag outside the conference room at 25 LPM with just a KIP 7 (Mine at typically 8-10 for a duratrtion averaging an hour). At one point I was even clearing the 40 bag but that got me back on track and I slowly tapered back down to 25 LPM then 15 LPM and aborted it within 15 minutes or so thanks to John Bebee who helped me out of the room and saved me from passing out by getting the O2 ready since someone had fiddled with the set-up of the Opti,mask there. One thing I'm contantly working on is to stop saying sorry for things I cannot control, it's a bg problem for me. I felt guilty making my mom leave the room and for interrupting a conversation John was having. I know they liekly did't mind one bit but for some reason it bothers me. I'm also seeing Dawn Buse as my psychologist over at Montefiore who might be a good speaker at CB in the future perhaps if Lee or Bob want I'll bring it up with her. She's helped me become far less suicidal than I was when I got to her even though she is often traveling she does phone appts if you need them. And in my case she knows I do. I guess it's a little harder not to consider suicide inb my situation because as some of you know I have a deadly incurable disease for which I've failed every treatment besides clinical trials...and they deny me from the trials due to my other pre-existing conditions. If I don't get remission the time span I've been given is 8-14 years and I'm only 23 about to turn 24. I just don't know how to stay strong anymore without leaning on someone's shoulder all the time it seems. Being in a wheelchair doesn't help either it makes me feel like a burden to anyone who has the job of puching me around wherever I go and having to find handicap accessible pathways everywhere. I just wanted to thank you all for listening to me at the conference and not shunning me just because I have a few other odd diseases. I don't really have many friends anymore all but 2 from college have all forgotten about me since they learned of my terminal illness. My friends sinbce birht all shun me and claim things like IBS keep them from coming to visit which I can't understand because I have a terminal illness, can't walk, chronic cluster & migraines, and I still make it where I need to be most of the time. I'd never leave a friend like that who's down and out so I don't know how it happend to me maybe I just hung out with the wrong people during my life. Anyways I now am an avid advocate I try to write a poem and an article whether it be a health update, conference info, or a video, sometimes self help tips or a review I still try and publish each day. I hope you'll all follow it as the blog is called "Migraine Discussions" but that's soon to change to Voice of the Patients. I was misdiagnosed at first so I thought I only had migraine but that didn't explain and handful of symptoms. Anyways if you have any questions about me just ask I'm an open book working on writing 5 books of his own. I just can't wait to be a part of this forum and be active since I don't really have much of a life, I remain in my dark little corner most days and nights with my trusting dog Loca, so again thank you for accepting me and it was a pleasure to meet all of you just as it was ap my pleasure at Headache on the Hill. I will be at all future CB conferences until the day I die or something BIG gets in the way, and I will be at Headache on the Hill as well hopefully paired up with my now great friend Steve who many of yo know from upstate New York special shout out to him as well because he has been super supportive whenever I need him. -Michael Quote Link to comment Share on other sites More sharing options...
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