Hello my fellow PWN’s, my name is Jessica and I have Narcolepsy and Cataplexy. I have suffered with symptoms since I was about 8 or 9 years old but was diagnosed at age 29 in 2014. I decided to become proactive in my search for answers and I started by going to online sources such as here, Facebook groups, and medical journals, and YouTube videos. There was a mecha of jumbled information, personal experiences, hypothesis, and comedy about living with Narcolepsy and Cataplexy. After joining this group, and the Facebook groups, I was then encouraged by both my amazing Nurse Practitioners to go with them to the Narcolepsy Network conference in Denver in 2014.
I had a lot on my plate right then and I wasn’t sure if I could afford it. My 9 year old Autistic son and I had been kicked out of our home by my now EX husband, we had to move into my moms basement with all our stuff, I had to give up my job working for the State as a Rehabilitation Technician for Juveniles because I could no longer work the rotating shifts as a single mom. I lost my insurance, my income, my retirement, and I could not afford a layer for the divorce. It was a struggle and a learning process but I figured out how to do all my own paperwork and file it for free to the courts to get my divorce done. Being off my medications, my symptoms suddenly became exacerbated by 10 fold! I could no longer commute to and from my college campus let alone take my son to and from school.
So when my NP’s made their recamendations that I attend the conference, I found a way to make it happen. By the Lords good graces, I received the funds needed to go to Denver. Once there, I had gotten to my hotel a little early and I sat on the couch to wait for a room to open up… And BAM!!! ATTACK BY NAP NINJAS!!! Those things are ruthless! I came too just in time to get upstairs and check into my room, but little did I know, I had an ambush of Nap Ninjas waiting for me. They put a forcefield on the bed and as soon as I fell into their trap, they knocked me out in one swift motion… Talk about total TKO!
I woke in time to make it over to the last part of the meet and greet where we met the amazing president of the NN conference. She even announced our attendance because she was pleased that my NP’s came with their patient to learn more about living with Narcolepsy.
Well 3 days later it was time to head home. I had several bad no sleep nights in a row due to unruly attendants partying up all hours of the night before across the hall of my room. I have to say that if it was not for my NP’s being with me, I pro ably would not have made it home. I had multiple N attacks, the first one was while I was driving the rental car with all of us in it back to the airport… (Joke: driving to the conference, I was driving us all in the rental car I had rented… NP in the back seat suddenly says, “Why is it that our patient with Narcolepsy who has been awake for over 24 hours is the one driving the rental car???” BATA DA BUM CHING!!! (HAHAHA)
So any who, I was almost completely incompassitated the whole wait and flight home. I had to be wheeled around in a wheelchair after being found passed out on the floor next to an escelator when they turned their backs for just a moment.
Yah I was a wreck. But I am truly greatful for their support and kindness. Since the conference, I have had to drop out of school, I’ve gotten behind on bills, sold a few guns in order to make ends meet. And I make too much according to the Health & welfare guide lines to qualify for assistance, yet I am falling further and further into debt. We have been doing testing on my poor kiddo for possible cancer, he is super depressed, talks about wanting to be dead and refuses to do anything. I am tearing my hair out some days trying to find help and answers but it seems like I either have to stop working or work hardly at all for 2 months before I can qualify for assistance or find a second job and ship my kid off to live with someone else. Which is not really a choice at all. My sons teacher is worried about my son because if his dramatic decline in school the last few weeks since my little sister moved back in with my mom, which has forced my son and I to try and live in a limited space where we can’t put things away (since there is no room for us to even be there in the first place), and my mom and little sister have become verbally and emotionally abusive to the both of us. Constantly putting us down, telling us how terrible we are, how lazy I am and that I am faking my Narcolepsy. Such joy living with family. Too bad I got turned down for housing assistance and was told I make too much… Of only I could smack people in the face with a giant sign that says, “Good hard working single mom with a debt to income ratio too high to afford food and clothes or shelter needs assistance temporarily to help her and her and her kiddo out so they can get back on their feet.”
There are those who qualify for assistance that need honestly need it and those who leach from programs that can get off their but and do something about their lives but choose to keep tapping into the free handouts because its better to be fed and free then working hard to earn something with all your pain, sweat and tears.
So… Since I can’t get ahead just yet, and no one wants to help us get back on our feet, I am going to be working on making a blog that focuses on what Narcolepsy CANT do. It can cause me and others much strain, hardships, losses of employment, social opportunities, and so on… But why focus on the negative? Negativity only breads more ad more negativity… And my life already had enough. There for, I am going to try my hardest to even things out by making things positive. I am sure to have bad days, and not everyone is going to read this but that’s OK. I am starting my journey with one step and then onto the next.
As I go on, I hope you can find inspiration and comment about the things that Narcolepsy and Cataplexy can’t take from you. Good luck!
LETS MAKE EACH DAY A GREAT DAY!