Let your Faith be Bigger than your Fear. Nothing is too big nor impossible for Our Lord.~ Sleepy American
I (SleepyAmerican) have a lot of experience in being a Narcolepsy and Fibromyalgia Healthcare advocate. My Narcolepsy is severe case of all the Auxiliary symptoms, as well as multiple health conditions, & some of the darkest most 😖 MySpace PWN groups we started and 2 YouTube Awareness/real sleep paralysis vids were my contributions to awareness circa 2006-7. 2003 I gave up driving, I still get significant cataplexy when sleepiness hits, and esp. if I fight to stay awake /wake up. It takes me a while to feel safe to stand when someone pokes me awake. June 2005 I married my long time boyfriend, as he finally got employer benefits. Two months later, His employer dumped all insurance coverage except a crap indemnity plan.
Experiences anyone could have experienced. I lost my ex-husband as he abandoned me in 2009 with absolutely nothing A week from eviction. While with him I had no health insurance yet in my sleep doctor was kind enough to help me with pain patient assistance programs which I had to apply for each one and I take more than just Narcolepsy meds I was trying to get 10 of them before I could get disability. I had to go without gabapentin for my fibromyalgia which left me in horrible pain most the time we went hungry we lost our house to foreclosure, filed for bankruptcy a lot of it was medical. It's the lowest point I had ever gone in terms of emotionally. It really was a cataplexy tornado.
My parents saved me from homelessness. A friend of mine taught me how to file for a free low-cost divorce because I cannot wait to get my last name back. In August 2010 I am most died from a cantaloupe sized Hepatic Adenoma on my liver. I very nearly almost didn't see the age of 30. In 2011 I got a scholarship to my second narcolepsy network conference in Las Vegas which I clearly subtitled my Divorce-moon.
These past seven years I've rebuilt my life. I have a much happier life, though finances and formulary RX changes lately have been a bump in the road. They mess with the Effexor XR generic and 💥 I'm on my backside in extended sleep paralysis. I am a mom of a two-year-old in my take care of her full-time. I went through the pregnancy wondering if/how I could have so many health problems. It amazes me that my broken body could create this perfect little girl intact with all the hypocretin neurons she needs. My family has been very supportive of the Narcolepsy since I onset severely September 2001. Of the worst things I have experience with Narcolepsy it would be insurance coverage, drug coverage. I knew there was something going on with this sleep thing when I saw cataplexy I knew that that's what I had and my grandma put it altogether and said I think she has narcolepsy. So right away I go in and like Dr. this is what's happening I need a sleep study OK here you go here's the sleep study. oh no roadblock: My mother's health insurance that I was on completely excluded sleeping disorders that means no diagnosis no treatment. I didn't get my sleep studies until February 2002 and of course it was the narcolepsy.
I would love to hear how you know what it's like to be at your lowest but still come out on top in the end. My Faith in The Lord carried me at my lowest parts of my life, and at times I could have given up hope, as logic and the world say so. Nope, I held on tight to God... that I would find a great man, more stability, and a family (Savannah Diane 's been my daughters name for 15yrs). Thank you, Jesus, for your blessings and angels lighten our load, sadness, pain, and amplify our joys, victories, and smiles. Thank you to all my online and in person family and friends for being by my side in the times of triumph and troubles. Amen. ~Sleepy American